Uncommonly Disconnected

Mitochondrial Mutations identified in Parathyroid Tumors

2011-09-20T18:56:00.002-05:00

Source: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2099428/

I found an interesting medical study done on benign parathyroid tumors that had been removed. According to the study, a majority of tumors sampled contained mutation of the mitochondrial DNA, mostly of Complex 1.

The general theory for why is that the mutated mitochondrial DNA replicates like it does in every cell of the body. Only, in the parathyroid it begins to collect, bundle together, in a benign tumor. This happens very slowly, over a matter of years, just like how a mitochondrial disease will show itself in an adult.

Why am I so interested you ask?

Well, here is my intriguing question:

If the mutated mitochondrial DNA is collecting, building a tumor, in the parathyroid, is it possible that a person with a mitochondrial disease (ie: mutated mito DNA) can present with a parathyroid tumor?

In other words, is the mutated mito DNA selectively parathyroid in origin, causing just that tumor, and be limited to that one area or can it be directly related to an existing mitochondrial disease that is now presenting itself with replicated mutated mitochondrial DNA in the parathyroid?

Ok, so once again, why am I interested?? Well, in Feb 2010 I was diagnosed with a mitochondrial disease. Then in August 2010 I was found to have a parathyroid tumor. Hmmm. It just reeks of questions without answers.

So if I were able, here is how I would study that:
1. Find a large sample of patients with known mitochondrial DNA mutations.
2. Test that sample for hyperparathyroidism to identify people with potential tumors (hyperparathyroidism is almost always caused by benign parathyroid tumors).
3. Get imaging, referrals, etc to have the parathyroid tumors (if any) removed.
4. Have those extracted tumors tested for mitochondrial DNA mutations (as in this study above)
5. Determine if the mutation found in the parathyroid tumor is consistent with the known mitochondrial DNA mutation causing mitochondrial disease in the individual.
6. If they are one and the same, well, there's a whole new line of questions...

Now, I know there are probably a lot of holes in that research technique and theory, things that probably are not orthodox to medical research, but does that not sound like a practical way to go about it?

Just imagine, if parathyroid tumors could be potential red flags for mitochondrial disease, how many more adults could be identified and given hope?

Just food for thought.....

Been a while...

2011-07-08T13:37:00.003-05:00

It's been a few months since I have posted anything. Life has been kind of getting in the way. Lets see... What's new...

1. I started a class in June that is like the turning point of my career, the foundation for Nurse Practitioner. It doesn't feel like much of a foundation. It feels rushed, short sided and like we are completely on our own to learn everything we need to know to diagnose and treat someone. Stupid... Anyway, I am plugging through. Should be studying for an exam right about now...

2. I have this new found desire to take my husband and kids on our first ever family vacation. We have never been anywhere that wasn't related to staying with family. My husband and I want to take them to Disney. It kind of seems like a pipe dream currently because it is so very expensive to go. Disney doesn't cater to larger families. If you fit outside the mold of the perfect two parent two kid family then you pay twice as much... But I have started a savings account, so we'll see.

3. Kimber hurt her knee... Poor thing. She fell straight on it. Nothing's broken, but she has a very large hematoma in one of the bursa that will not go away. It shrinks and then it swells again...

I guess that's pretty much it for now. I am still using coupons, but not as much lately because this class is so demanding and using coupons effectively takes more time and planning than life will allow for now. I did get boxes of cereal for a dollar and pop tarts for $0.69! =) I was able to get body wash, toothpaste, BBQ sauce, mustard, and many other things for free! Loving the free!

Giving back to God

2011-04-27T11:05:00.003-05:00

God has blessed me with this gift of couponing. It kind of sounds foolish saying that, but I have had a revelation and I really want to share it.

How many low income or homeless families do without things that we take for granted? Deodorant, toothbrushes, toothpaste, floss, toilet paper....

In the last week I learned how to get floss for free and have 12 cents left over from the coupon towards another purchase. I also figured out how to get trial size deodorants for free. Toothbrushes for about 25 cents and toothpaste, trial size, for free......

Here's the deal... I don't need 80 packages of floss. But I have the ability to get 80 packages of floss for free. So I am in search of a ministry to give these things to the people who need them most desperately.

I'm not a shelf-clearer, greed will not overtake this God given talent! I am looking to give back to God through His people.

Now to find a ministry. =)

New Love of Couponing to Save us money!!!

2011-04-21T16:04:00.002-05:00

I have totally fallen in love with couponing!! Before the show on TLC, I always thought couponing was just a hassle, and not really worth the time for just a few pennies saved. Boy was I wrong. While I certainly will not go to quite the extremes as the drama of the show, I am learning so much about how this can really save us a lot of money!!

I have a husband and 4 kids so we go through some things so very fast! Examples: cereal, laundry soap, toothbrushes, toothpaste, school snacks.... etc...

Over the last couple of years our grocery bill has just ballooned out of control! And I have had a revelation from God on how I can help bring us back down to a real grocery budget and not break the bank trying to feed out family.

I have set some ground rules for myself:
1. I don't need to stockpile 40 and 50 of items that we never use, or rarely use. They show that in the show just for dramatic purposes, and if I ever had the opportunity to get that much of something for free, it would for sure go to Hope Mansion.
2. I will not allow it to become an obsession. It will not consume my life and if I can't get the steal of a deal for whatever reason, then I will not get all teary about it.
3. I will simply be grateful to God for what He is providing for us.
4. I will give back to Him for providing for us.

Here's what I have done so far:
Stocked up on about a month's worth of cereal for about a dollar a box. That was exciting!!
Got about 2-3 weeks of school snacks again for about a dollar a box.
Got 2 bottles of Nivea body wash for $1.50 (I wouldn't mind getting a few more to give away to family, but they were all out...)
Got 8 Reach toothbrushes for $1.50
Got 3 containers of dental floss for free!! Oh how i love free!

Here's my goals:
1. Learn how to get toilet paper and paper towels for as cheap as possible.
2. Learn how to get laundry soap for as cheap as possible.
3. Learn from this how to use God's money wisely without becoming obsessive.

Thank you God for this revelation and for teaching me how to use our resources wisely. I don't want to have wasteful spending anymore. =)

Here's a blog from one of the Extreme Couponers from TLC's show.

Heartbreaking...

2011-04-08T09:13:00.002-05:00

Imagine this: Your 7 year old child (with a mitochondrial disease) gets up in the morning, and she feels like poo. Her legs are hurting and she starts the day having meltdowns about little nothings (there's not enough milk in her cereal). As her parent you know she has to go to school, you know she can't throw hissy fits and think that is ok to do, and she has to learn how to move on in spite of the way she feels.

But as someone who feels the same way she does often, you hurt for her, want to tell her to just stay home and lay in bed all day, or do something to help her realize that throwing the fits will only make her feel worse because she uses so much energy throwing a fit.

What do you do? I love my Kimber, and it hurts to know she feels the same way I do, but she has to learn that she can't just throw a fit and stay home when she isn't feeling up to par. The school certainly isn't going to excuse 30 days missed because her legs hurt.

This morning we fought to get ready for school, take medicine and then we sat in the parking lot of the school for 20 minutes while she threw a fit. Then when she composed herself, I took her into the school.

I am still learning how to handle these kinds of situations. How to teach her to live with this and still function. It's so hard sometimes.

Sooner than expected!!

2011-04-04T21:13:00.002-05:00

Wow. That's all I can say.
I had a meeting today with the advisor for the Masters program in Nursing at the University I attend, Texas Woman's University. I am currently in a program that is set up so that nurses that have Associate's Degrees can take Master's classes and undergrad BS classes at the same time and gives you credit for certain classes because of your experience as a nurse. In December I will have my BS portion and will be almost finished with the MS portion. In our meeting today she outlined the rest of the program with me and discussed clinicals with a preceptor and said that if I take a class over the summer, 2 classes in the fall and one along side the clinicals, that I can start clinicals in the spring! Wow. I thought it was going to be next fall or the following spring before I could start. That's craziness! It seems so fast!

My clinicals will be with a nurse practitioner in pediatrics and when everything is said and done, if I pass my certification exams, I will be a Pediatric Nurse Practitioner!! Wow.

I am praying for a smooth transition, because the roles are so very different. =)

Ladies and Gentlemen RE-start Your Engines!!

2011-03-29T12:28:00.003-05:00

I restarted the supplements today. We got in Kimber's order, which is less of a dose than mine, but I ordered lots extra for her, so I started on a smaller dose for now until mine comes in. I think the ever looming thought of school papers pushed me to the edge of losing patience for my own supply to arrive. One more week and I will be back on my own dose and she will be on her own dose and we will hopefully be back in the race, or at least on our way out of the pit stop... It's a process, I know.

And, I know God was looking out for me and heard my anxious cries because today my professor extended the due date for the paper by 3 days! Yay! So now I have a little more time to factor in terrible feeling nights like last night. I did get a little school work done today, which brought some peace to that area of my brain. Now if I could just wrap my brain around those papers. It is so hard to get started, or restarted on them. It's like I have to dredge through knee deep swamp mud then hurdle a 6 foot wall and after that it's smooth sailing to the end of the paper.... Ha. Now to tackle the muddy swamp...

What's a girl to do?

2011-03-28T21:55:00.002-05:00

Oh boy.

I have so much school work due. Big project/paper type school work...

Every night that passes and I haven't worked on it feels one step closer to failure. Not failure by normal standards, but by my own of course.

Tonight my hands and arms are very weak. Typing is hard, my forearms hurt like crazy. My neck/shoulder is twitching some kind of mad. My head feels full, and I keep getting lost, confused.

I can't even imagine trying to do school work right now. I can't even remember what I ate today, much less be able to write a scholarly research paper on minimizing reality shock in the new graduate nurse orientee. Man, I can't even remember the title right... Arg!!!! I am feeling highly frustrated at this moment at the thought of last minute shoddy work because my brain is mush. That's right. You ever see tapioca pudding? Well, that's my brain right now.

I'm even afraid to pick up my new phone because my hands are so weak. I can hardly grip the mouse, so I can imagine my shiny new phone hitting the floor and meeting it's doom...

Sorry. I am ranting and raving. Mostly because I am procrastinating trying to start on these papers because I know I can't functionally do it right now. Only I don't know when I will be able to because it has been this way for days. It's easy to regurgitate information. But I have to make this mine, only mine will be a jumbled bunch of mess. Kind of like this post...

Mitochondria Mayhem

2011-03-27T11:11:00.004-05:00

In some ways I am still in denial about this "deterioration", to quote my doc. Sometimes it seems easier to deny the situation than to try and understand it fully. Sometimes I think, well maybe I am just crazy, but then the symptoms come back like a whirlwind and I realize that I am in no way crazy.

One of my FB acquaintances quoted the head of the United Mitochondrial Disease Foundation from his blog. It was an amazing blog to me because he showed what it is like to have a mitochondrial disease with metaphors.

Here is what he said:
"Okay so here it is; mitochondrial disease occurs when the body cannot produce enough energy to sustain life. Of course this is sort of like saying the earthquake that caused the domino disasters in Japan is the result of an acorn that fell off an oak tree in San Diego.

Mitochondrial Disease is like:

Replacing your car battery with two Double “A” Energizers and wondering why it won’t start. But your car still looks pretty good, that is until it begins to rust from inactivity.

Trying to supply the electrical requirements of Los Angeles (pop. 3.7 million) with the one electrical plant in Ranchester Wyoming (pop. 701).

Swimming against Olympian, 8 Gold Medal winner, Michael Phelps, and you’re pool is filled with molasses." --Charles A. Mohan, Jr. is CEO and Executive Director of the United Mitochondrial Disease Foundation (Retrieved from http://umdfblog.com/home/?p=338)

He said a lot more, but those were my favorites!

Mitochondrial disease is much newer to the medical table than other diseases. Mitochondria have their own set of DNA, which can contain so many different kinds of defects. As a result of these defects, various functions of the mitochondria can be affected. On top of that the mitochondria have a whole series of steps in converting, storing and using energy. Any number of things can go wrong, and without an obvious source in the areas that are currently understood by scientists, many mitochondrial diseases are elusive.

Because mitochondria are the "powerhouses" for every cell in the body, a defect can affect most body systems. Depending on where the defect is will determine if the damage stays within a certain body system or becomes multiple body systems.
Here's a quote from the UMDF website describing mitochondrial disease:
"Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection."

Originally mito diseases were thought to be childhood diseases, but adults are being found more and more with mito disease. The thought is that they had the defects since birth, but that it takes a long time for enough mitochondrial damage to occur that it shows symptoms, or even that it was just elusive as a child and missed.

While there is a wide range of testing for mitochondrial disease, only the most obvious kinds will show up on basic testing. This testing includes muscle biopsies, labs for lactate levels, organic acid levels, liver enzymes, muscle enzymes looking for muscle damage, and even organic acids of the spinal fluid. Despite the best of scientific knowledge about mitochondrial disease, even these tests are not 100% accurate in diagnosing it. There are obvious types that will be diagnosed using these methods, but a negative result of these does not exclude mito disease.

The UMDF says "Think mitochondrial disease when 3 or more organs are involved."

Mitochondrial disease can be a result of inheritance or rarely by a spontaneous mutation.
These pictures show the inheritance pattern of mito disease:

The first is if the father and mother are both carriers. Then 25% of children are at risk of having the disease and 50% risk of carriers. The second shows if the mother has the mutation in her cellular DNA, the chances are that 50% of her children will for sure have the disease. The third is if the mother has a mutation of the mitochondrial DNA. Then 25% will have full effectiveness, then the effectiveness gets milder and one child may not show signs at all.

This last one seems to be how our children are showing signs.

Kimber is affected. Nikki shows less signs than Kimber, but has some, Joshua even less than Nikki now, although he had a lot of signs when he was an infant, and Amy seems to not have any signs at all. Interesting to say the least.

Treatment:
There is obviously no cure. A person with a mito disease will have it for their lifetime, and depending on the area and type of defect will determine their lifespan, quality of life and severity of symptoms as they get older. Certain types, like MELAS, reduce the lifespan due to complications from the disease.

Physical therapy, occupational therapy, speech therapy, and assistive equipment are just a few of things that mito patients have to help. The other treatment, which is not proven to be effective, but has been shown to be very helpful, is supplements. The "Mitochondrial Cocktail" is a group of supplements often suggested by physicians. They include L-Carnitine, Coenzyme Q10, Creatine, Vitamins C, B, E, alpha lipoic acid and L-arginine. Many of these supplements are thought to be helpful in allowing the cells to use energy more efficiently.

Kimber and I take part of the cocktail currently. She is on L-Carnitine and COQ10, and I take those and Creatine. They have helped us significantly. I was in a bit of denial and have been for a while since the type we have has not been figured out. How can we have a disease and not know what type it is? It not really show up on diagnostics.... A few months back I ran out of the cocktail. Pretty much I let Kimber have the rest of our supply because it helped her so much with her school performance. And in the last month I have deteriorated to where I was before I started taking them. Proof to my doctor that it is a mitochondrial disease, even though it is choosing to be elusive. I am still a bit skeptical, but when the cocktail comes in and I begin again, I guess we will see if there is a marked improvement like last time. I guess then I will know for sure.

I've decided I am going to start posting on different types of mito diseases. It is such an elusive disease, it's often called the great masquerader. Everyone needs to know what it is and how we are affected by it.

Another appointment

2011-03-24T18:40:00.003-05:00

Well, if I had anything spectacular to say the title wouldn't say another appointment, it would say Yay for whatever...

The great news is that Kimber's EKG and Respiratory eval were normal. The doctor did everything I expected her to. Kimber had a great neurological eval with no major deficits. She has some mild hypotonia in her arms/hands that the doc picked up on, and while the doctor did not see her at her worst, at least this was acknowledged. I want to videotape her walking when she is feeling terrible to show them, since it is never at an appointment.

She is going to do some labs, but told me flat out that she didn't expect them to come back abnormal. I guess I should be thankful for brute honesty instead of masked false sense of hope. My neuro never did blood levels of things like lactate and pyruvate. She id urine organic acids, but not serum. If something comes back abnormal on Kimber, that might give them an idea of where to go for me with those types of labs, but I know the elusive nature of these things, and when you are feeling good, of course your labs are most likely going to come back normal....

So I am thankful that I took a step back and took hold of those emotions before allowing this appointment to completely bring me down. I will be grateful for whatever God gives me and move on with what I have until something new happens or is found.

=)

Later tonight.... =(
So it has taken me 4 weeks (app) to get to where I was when it took me almost a year the first time.... I feel confused. I don't understand what is going on, and I hate not understanding. Time to get supplements on board again, no wait, the time for that has already passed. Just going to have to deal with this until they get back on board and hopefully start working again.

Post a day?

2011-03-23T12:07:00.004-05:00

I'm in a new contest to see if who can post everyday. The requirements state that it has to be something that makes absolutely no sense and not really matter to anyone else except you! Hahaha

Just Kidding.

No, but seriously, I just feel this intense need to lay it all out there on the table. Let it all go. God, I trust You to take care of me, to love me and make sure that I have what I need. You know better than I do what I need. Especially regarding my body.

I feel like it is betraying me right now. I feel like I am on a down hill slope, and you can best bet it isn't the bunny slope... I guess in my own mind I thought I had come to grips with how I was doing. I had "figured it out" as far as how to control the symptoms. Boy was I wrong. I am not in control God, You are. You will bring me through this just as every other time, regardless of my state of panic, so what good will it do me to panic?

I will do the laundry today, cook dinner, maybe finish some school work, and then I will go to sleep. Tomorrow I will take Kimber to her appointment and pray that You guide that appointment. That it meet your standards, Your expectations and that You will guide her in the right direction, be that something beneficial or not.

No stress will take away my muscle weakness, so no point in adding anything extra to my mix. =)

Later this day... Yup, that's right... It's the same day...
I emailed my doctor just now to let her know of the changes... I figured I had better not show up on her office doorstep with a myriad of symptoms that are progressively getting worse...again... without some warning. Not that she can do much since I don't have insurance right now... No way we can pay hundreds or thousands of dollars for more testing that will turn out the same as last time... Shoot, we can't even pay tens of dollars right now. So, I guess it was useless to tell her, except that I just felt compelled. Haha. I'm sure she appreciates my extra long compulsion.... =)

Even Later this day... Hahahaha
So my doctor emailed me back tonight and decided to give me what might have sounded like a good lashing if I could actually hear her... I guess me telling her honestly that I had stopped the supplements because we ran out of them and money made her even more sure that this is a mitochondrial storage disease and that my "deterioration" is a for sure result of not taking the supplements. Hmmm. Curious thought just hit me. I wonder how mad she would be to know that, although that was not a lie, I stopped taking them months ago versus weeks ago because we ran out of money months ago..... I wonder if that makes a big difference.... Oh well, will have to curiously be wondering because I do not want another lashing email!! =) At least I have a doctor that responds to me via email. for that I am thankful.

Nerves

2011-03-22T11:39:00.004-05:00

Ha, I guess that title could take on several meanings.

Today it just happens to be "butterflies in my stomach" nerves.

Kimber's appointment is on Thursday. For several days I was researching, thinking of anything the neuromuscular doctor might ask me, anything that might give her a lightbulb moment.

Of course I had to take a step back to see the reality of the situation. I am not her patient. I have to remember that.
I AM NOT HER PATIENT. While she will be asking me questions about my symptoms to clue her in on Kimber's, she is not treating me.

I guess I have just been so blessed with Dr. Scheuerle in that she has always taken me into top consideration. She led me to the doctors I have today. She knew how to help me in small ways that really made a big difference in the long run. But the reality is, not all doctors are that way. I knew this reality. I have worked with doctors who are the exact opposite of Dr. Scheuerle, and I have seen these kinds of doctors personally. They only care about quick answers and getting to the next appointment time. With them, anything out from under their radar of diagnoses, is just the patient exaggerating or playing up stuff that isn't there. It was opinions like that which really kept me from seeking help for a long time. The first doctor I saw played everything off on my weight. Of course, I don't know how being over weight can make you have seizures, but I to him I was just a number on his list of "what now..."

So rather than putting all of my hope in this new doctor I have come to realize that she is not treating me. And if something comes of this appointment that gives her an idea for Kimber that helps me, then wonderful. But, this is for Kimber.

I will put my hope in God that He shows her something for Kimber and maybe I will reap some benefits from it, but I am not her patient and I will not expect her to try and put a real name on the "suspecteds" on my medical records.

So the butterflies in the pit of my stomach about this appointment are really useless. Nothing will become of this appointment that will diagnose me and I will face that.

It hurts, but it is reality.

Descriptive relief

2011-03-19T22:47:00.005-05:00

How do I describe it?

My legs are heavy like wet sandbags after a hurricane.
Walking is like pulling my leg out of knee deep mud in Core Sound.
Thinking is like driving through the thickest misty fog.
Breathing requires thought and planning, forgetting is devastating.
Muscles twitch and nerves fire like the bursting finale of the Atlantic Beach 4th of July Fireworks.
The backs of my arms burn like Carrot Island during the fireworks show every year, expectant and spreading uncontrollable despite best efforts.
The ringing in my left ear keeps fading in and out like my grandmothers old rotary phone, so loud that it drowns everything else out.
Muscles are clamping down like the scallop that was just plucked from it's comfort zone.
Staring off into faded non-distinguishable dimensions, powerless to look away but painfully aware of everything.
Nausea rushing in like the tide, choppy waves just before a storm.
Weariness like the weathered soul that withstood one to many nor'easterns at sea.
Fatigue like the tree that topples from the pressure of the 150 mi/hr winds.
Being pelted daily with this onslaught of symptoms like the torrential downpours just before the eye of the storm.

Ugh. I used to be so good at creative descriptive writing. My brain is like mush.

Roller-coaster with no end...

2011-03-18T22:48:00.004-05:00

I know my blog lately has been all about my feelings and nothing like how I wanted it to be, but sometimes I feel as if this is my only outlet aside from talking to God. And sometimes I feel like I can do my best talking to God right here because I can't even think right to tell Him what I am going through. Then I feel ashamed. God knows what I am going through, why do I tell Him? Shouldn't I be stronger and awaiting His relief patiently? But I am not strong right now. As much as I want some one to understand that, I have come to realize that there are not many people who love me that do understand that, and if they do understand it, it is because they themselves are walking in the same muddy path alongside me and they have the same amount to give as I do. How dare I ask them to listen? And what good will listening to me do when they are powerless to help me?

I feel so weary. Tired. Not sleepy tired. But just fatigued, worn out, in need of rest that just never comes. Rest? Like time away from kids and household and school? No. Even time away from all of that will not take away the constant plague of symptoms that I have. Then I feel guilty. There are others so much worse off than I am. I have been blessed in that I can walk. I can eat, I can breathe, I can do so much. How dare I feel this way? Is it wrong to be weary? Is it wrong to plead for answers?

I feel as though I am constantly having to defend myself, against people and hurtful things they say, against myself and my own self loathing, and against these stupid symptoms that make me feel every day like I may just be crazy.

I hate roller coasters that just go up and down and up and down with no end in sight. If I am going on a ride, it better have twists and turns and end with me still intact. I do not feel like I am still intact. I am taking a beating and I have hit the floor. The ref is counting to 10. I know I will get back up again, but when? And when I do, will I still be able to fight?

Where do I go from here? I can keep walking everyday, pretending that I am ok, never really having someone to understand. I have been there many times. I know how it is, how lonely it is, how much hurt gets bottled up until I accidentally blow and someone I love gets hurt for no good reason. Except the reason that I have nothing left to give. I am so very weary and everyone around me is suffering for it. I would rather suffer in silence than hurt someone I love. God please tell me there is an end in sight? or at least show me how to get back to being me with modifications.

Today was a terrible day and I will bottle it all up and package it and set it aside just like all the rest.

Moving like a turtle...

2011-03-09T20:35:00.003-06:00

This week has been a bit hard. I have been very slow moving. Very symptomatic. I can really tell my symptoms are bad when it effects my writing and typing too. Usually it's just speaking that gets funny, but when it's really bad, I go back and read and what I wrote makes very little sense or has so many misspelled words in it. I'm not sure what I am doing wrong this week to make it so bad. I stopped exercising hard, mostly just around the house stuff and I have been eating. It could be that TOM is about to pay me a nasty little visit. I always get very bad the week before he comes. The muscle weakness is pretty pronounced right now. My back and abs feel weak, and I am hunching, not on purpose... Having a hard time sitting straight up for more than a few seconds really. And the lovely limp is back. Not as bad as before. I mean, I don't need the cane right now, but it is for sure there.
Fatigue. Man the fatigue is so tiresome. hahaha Did you catch that? I feel like I could fall asleep fixing dinner... We ran out of the mitochondrial cocktail, and given that our van just died and we had to get a new one, we haven't been able to get any more yet. It really sucks because I can see a difference in Kimber too. She has been having a pretty bad week. Fatigue and brain power, and when she gets fatigued and symptomatic it always means melt downs... Crying and then sleeping it off.

I have to find a way to get more meds. They are so expensive in the doses we take them in. The Coenzyme Q10 at Walmart is 20$ for a dose that is half of a month for Kimber. ANd I take 10 times the amount she does... Ebay has proven very budget worthy for our meds, but I have to buy it in bulk, which is still pretty expensive when you total it up.

Stories.. Bad internet...

2011-02-28T22:31:00.002-06:00

Feeling really bothered now, as if the freakish movements weren't enough. Just got a hold of some patient stories of people with mito disorders that were missed on frozen biopsy and picked up on fresh biopsy. I know my biopsy was frozen because I ran out of insurance and they had to freeze the sample and wait until I had medicaid to do the testing, several months later. I just don't know what to think. Kimber has an appointment with a muscle doctor at Children's at the end of March. At first she was going to refer her to a mitochondrial doctor out of Children's, but then she got her case from the geneticist and read it and wanted to see her, so I am praying that maybe she has an idea that no one has thought of or tested for. Well, truly that could be anything. The more I study up, the more I realize that beyond the muscle biopsy and urine assays, no one has really tested for anything. It's all been clinical assumptions. But there are so many genetic tests that could help! Soon, like in the next year or 2 there is supposed to be a generic genetic test to look for most types of mitochondrial problems in the DNA. That is simply amazing to me.
I know Kimber's geneticist said there is no reason to take a stab in the dark with DNA testing, but it seems right now that a stab in the dark is better than nothing. Maybe that's because my semi-returning worsened symptoms are freaking me out a bit, but I just don't get it. So, my brain will rack over it all night long: Would a fresh biopsy have shown more than the frozen one did?

New Symptom...

2011-02-28T21:21:00.002-06:00

I had a new unfriendly symptom show up this week. Well, I wouldn't really call it new, just in an unusual different location.

Ok, it sounds weird and stupid, but here goes...

Keep in mind this is involuntary, as I feel like a crazy fool as I am about to type it out.

My throat, mouth and tongue act as though I am about to throw up, movement wise, my tongue comes out of my mouth. As freakish as it sounds, I can imagine it looks that way to. It comes with fatigue, muscle weakness and this really weird cold clammy feeling. I can't make it stop and after ward I can't really function to do anything for a second or two. I don't know if it's mini seizures again. I have seen kids have seizures like that, and I have seen kids just do that involuntarily at TSRHC, but I have never experienced it. I don't like it. It feels terrible, I can't control it, and I don't like feelings that I can't control. Before tonight it was once here or there, like every other day, and tonight it has been a lot.

I had involuntary movements a lot. Muscle twitching, hand movements, head and face, but it had gotten much better in the last few months. I don't like what this is implying, and I don't know if it is from all the new exercise and diet, or what. I don't know if I should tell the doc. If anything, it's not what she'll say that makes me uneasy, it's that I feel like a fool saying it myself, and I don't need to think that someone else is thinking that I am crazy. Sometimes it feels as though I must be crazy with all of this, but the moment the symptoms show up full force, then I remember just how not crazy I am. Sometimes I just wish people could just see what is going on without me having to tell them my crazy symptoms. Like with a broken leg: you see the swelling, you touch it and they jump out of the chair, you take an x-ray and see the evidence... Sometimes I ask God why my experiences could not have been a little more straight forward like that. But I know that my God is bigger than anything I am going through, and just because the doctors don't have a name or face on it doesn't mean that God doesn't have it all under control.

Little White Fib never hurt Nobody...

2011-02-25T21:25:00.002-06:00

Ha. Well, technically it's not a fib per say, more like an exclusion of the truth in its entirety... The doctor was in hurry the other day at my appt... Usually when I come in it's a 2 hour visit... I didn't want to do that to her. I knew I was looking better since I've lost some weight and walking is much easier when I have enough energy... She was happy to see me doing better. But I keep getting this little twinge that I misrepresented how I am really feeling. God knows that I don't need her thinking I am "all better" because I am far from that. The last two days have been a glimmer of reality creeping back in on just how unwell I still am. So I am going to lay it down how I see it...

I was working. Working and taking care of 4 kids and our house and school and then extra working on top of that working and then kids homework... You get the picture. Eventually it all caught up to me, and I became a hot mess... Well, not so hot in a pretty way, because I was not a pretty sight... All symptoms all the time with no breaks...

Then I stopped working... Slowly but surely with the supplements and praying and not driving my body into a brick wall every five minutes, my symptoms got a little better. I still hurt. I still puked. I still couldn't see right, but at least I could walk while I was doing it... My symptoms were kind of back to like they were in the beginning, mostly after over doing it, mostly at night, and tolerable...mostly...

So that is what my doctor knows. That given that I remain within my "limits", I can function.

Here's the truth, all exclusive, the last 2 weeks giving me a reality check...
I am not all better. Losing weight has done nothing to help my pain, has done nothing for my muscle weakness, and having battled so hard to accomplish this weight loss is actually putting me backwards.
Today, while driving down the tollway at 70 mph, my right arm went "heavy" and my right eye droopy and my head starting hurting. Anyone else would be off to the ER, but this has happened plenty enough, and I know it is just my lack of energy screwing with me... Today the pain was full force, not letting up, relentless, with the creepy crawly feelings and nausea and confusion. Today was bad. I can't think. Today was reality. I am pushing myself 100% just like when I was working, and now I am falling back in that same muddy hole that I spent a year trying to dig my body out of.

Reality is: it's there. It's not going away no matter how much weight I lose or how much I lie to myself, my family or my doctor. I hurt. I can't see, I can't think, I can't half get a thought out when I am trying to talk most of the time without screwing it up. My muscles feel like jello at some point every single day, and are useless when I decide that I can take on the world.

She asked me if I was ready to try the work thing again... Really? I can't even exercise for an hour a day without paying a steep price for it later. How in the world am I supposed to do a full on 12 hour shift (which is really 13-14 hours) of walking, lifting, moving, stressed, no nutrition, and little sleep??

So now I feel as though I have led her to the wrong impression, to one that is not my reality because I did not want to take up to much of her time like usual. Way to go me. Pat myself on the back, good job being a complete moron.

50 and thready...

2011-02-21T11:59:00.002-06:00

Ha. This is just for my own remembering benefits. Memory is not so swell today, and so I needed to write this down.

My heart's been doing some funny things lately. I can feel it pounding and then it feels like it's not even beating. It is mostly after I have done some serious pushing of myself. The last few nights have been particularly difficult. Light headed, confused a bit, and my heart going crazy, HR in the low 50's, which is not ok for me. Feeling like it is galloping one minute, then feeling like it is swirling. Swirling? Yeah, I guess that's the best way to describe it. Like a back current, an undertow in the ocean, rushing then switching directions. Swirling that makes me gasp and catch my breath. I am hoping that in writing this will illicit some sort of adrenaline response, like a panic scenario that will raise my heart rate and make my chest not feel so weird. Right now my heart rate is 51. My head feels funny and my chest feels funny. Get to the doctor? WHy, so the panic will set in and by the time i get there it will be normal and they'll say what a waste of our time? No thanks.

Tell my doc? WHy so she can ask me to get an appt with my cardio who will then look at me with his gentle giant skeptical look that he gets and do an EKG, which will be subsequently normal because the mere movement into his office will be enough to raise my heart rate... Ask for another 21 day monitor? So he can tell me the first one showed only minor problems which likely haven't gotten worse in just a year... Or so they can both ask me why am I not taking my metoprolol and I can say it's because I don't have insurance and can't afford them without it, for which I will get another "eye" from both of them...

Well, so far it was somewhat effective. Up to 56 now. A little nervous to get up and do a lot to raise it, knowing that is why it is like it is right now... To tell them both about the chest pain, which is not the usual "heavy crushing" pain of a true heart problem. It's a stabby, sharp with some weird feelings in my face and right neck and serious pounding heart at the same time. I can feel each pain as if it were stabbing through my heart with every beat. SOmetimes it's from the front, and sometimes it's from the back. I know these pains can be anything from GI issues to costochondritis, to just nerve pain, but that doesn't make it any less scary.

Ok, done ranting, gotta get up and move...

Very symptomatic...

2011-01-26T16:21:00.002-06:00

I'm not sure if I just over did it a bit one of the last few days or if the last couple of weeks is finally catching up to me, but I am so very symptomatic. Yesterday and today. My head is in a mess of a fog and my muscles are like jello...

Body Bugg:

I am so loving this recent investment!! It has helped me realize where I go wrong with recording nutrition, and is a must for knowing how many calories I burn in a day. I have yet to try it on a day of rest to see what my bottom minimum is.

When I weighed myself in it even took the amount of weight I lost compared to the amount of calories I burned during the week and it showed me an estimate of the actual amount of calories I took in, which was not the same as what I was recording. It's time to get a food scale....

For the first time in 3 or 4 years I am back under 200 pounds! Of course, if the wind blows the wrong way I'll be 200 again, but for now I rejoice in the smallish victory, grateful to see a 1 in front!

Yay.

Now if my cravings will just go away. Speaking of, I did notice that when I got symptomatic, the cravings started up again... I was doing really good with them. I don't know what to do. I have such a desire to get it done, to do the best I can, but I don't want to accept my limitations. I don't want to be slowed down by this "suspected disease"..... I want my body to have the same drive as my mind. HELP!!!

Body Bugg Burn!

2011-01-22T10:28:00.002-06:00

So today is day 3 with my BodyBugg. I am loving it thus far.

I was right about the band on my underarm skin. It gets pretty irritated when I move around a lot. I fixed that though with a fuzzy sock between the band and the skin! I should patent that! The Fuzzy-Bugg Band for sensitive skin! =)

Yesterday I burned a little over 3800 calories! And since I only took in about 950, I had an excellent fat burning deficit! I lost another pound! Wooohooo!!!! 200.6 lbs this morning. Only 1 more pound to go and I will be under 200 for the first time in at least 3 years!!

Before the Body Bugg I could only guess at what some exercises did for burning calories.

Well, now I know!
1. Wii Free Stepper: 30 minutes at moderate steady pace= 200 calories
2. Wii Free jog at a slower pace= 150 calories
3. Wii Fit Boxing 6 minutes at a moderate pace= 70 calories
4. Wii Hula-Hoop 6 minutes at a moderate pace= 60 calories
5. Walking 2.3 miles at a brisk pace= 400 calories!! =)
6. Sweeping and Mopping the Kitchen= 75 calories
7. Laundry per load of washing drying and folding= 100 calories
8. Dishes, unload and load dishwasher= 50 calories

So there is a good start to what I do in a day, and how much it is worth.

My goal for today is at least 3500 calories burned, I am a little skeptical since I got up a little later today and the kids are home, so I can spend less time on it. Not to mention I have to get started on school for this semester.......

I have a new found love of yogurt. I used to hate yogurt, but yoplait has some really yummy flavors, and if I add in some raspberries, 1/2 a banana and some blueberries then I have breakfast for under 200 calories! Yumm!!

Ok, that's all for today.

Buggin' for the BodyBugg!

2011-01-20T10:23:00.003-06:00

So I have a new toy!!! It's called the BodyBugg and it's from 24 hour fitness. Ok, let me explain. You see, I love the show "The Biggest Loser". I know it may sound cheesy, but I get inspired to change every time I watch it! =)

Change what??
1. I eat way to many carbs in the form of SUGAR!!! I love anything chocolate, but especially brownies... Mmmm... Gotta quit talking about them...

2. I DIDN'T eat hardly any vegetables. I say didn't because I made this change before I got the BodyBugg. I have made it a habit of filling myself with ones that I like (acorn squash, zucchini, tomatoes, broccoli) because they are sooo low in calories!

3. I hated water. I am doing better with it and drink it regularly because I need it. What was I drinking before? Sweet tea, orange juice, etc. I didn't drink a lot of soda, but everything else I drank was full of sugar.

4. I NEVER counted anything I ate..... I would just guess, if I even bothered to do that.

5. Since my disability started, my movement, the constant motion I was in from work, was very much gone with the wind. I cleaned house, I walked every once in a while, I grocery shopped, but not a lot else. I made that change also. It's hard. The mito and fatigue and pain make it very hard, but I am determined to lose this weight and I will do whatever it takes, even if I have to push myself farther than I ever have.

My Goal?
I want to lose 52 pounds before my graduation, which is May 13th. That will put me at 150. That s a short term goal. In the long run I want to be a healthy 120ish. Healthy is a good key word.

I am learning a lot about balance. I always thought I had a good diet because I didn't eat out at fast food places a lot and I didn't eat super fatty foods like potato chips, etc. What I didn't know was that I was sabotaging all of my efforts with a terrible balance in eating. I wouldn't eat breakfast, then would snack snack snack, then eat a decent lunch, but no veggies and a lot of carbs like bread. And because that was never enough to last until dinner, I would eat a big dinner, which would sit all night long while I slept, collecting as blubber.

NO MORE!!!!

Ok, so on to the BodyBugg:

Setting it up was challenging for me because the USB cable they sent me wasn't working, so I couldn't get it charged up or downloaded and I didn't realize it. I finally found one of my husbands new cords and got it working great. Plus the system has a 1 year warranty, so they are going to send me another cable.

The band kind of rubs under my arm a little because the skin there is pretty fragile, but I think I will adjust to it with breaks for showering and what not. They suggest it be worn for 23 hours a day so it can accurately pick up your calories during that time. But it does say that it can be left off during sleep if necessary and the system just calculates what your average sleeping calories burned would be ad automatically includes them.

The display looks like a giant man watch. I would wear it as a clip on, but then I would be struggling to turn it to see, and I like having my calories out right up front where I can see them. It's not to bad, I just haven't worn a watch in a long time. It looks kind of like my old work watch. Memories... Anyway, it's pretty easy to use. It displays your current calories burned up front. If you want to see other data like calories burned yesterday, you just hit a series of buttons. It alarms you when certain things have been done, like you reached your activity goals for the day. Oh, and it tells time! hahaha

So far today: 1127 calories burned. I just got it set up this morning, so I wasn't wearing it when I worked out early this morning.

I am so excited to be able to see everything I am doing!!

The Apex Website:
This is where you record all of your meals and download your Body Bugg activity to. It is supposed to be easy to download with just the USB cable. I'll let you know after I do it.
It will only let you record your weight once a week, so I think I will def keep using fatsecret.com. There are parts I like about both sites. There is def way more support on Fat Secret, but the exercise log there is hard to use if your exercise just doesn't fit.
The site has you set up a "Program" with your goals like your weight loss goal, your time frame, and any muscle gain or fat loss goals you have. It won't let you go over what they call a safe amount, which for me was 3.75 pounds a week, but I know I can do better than that, so I'm not so worried about it.

I will get a 45 minute coaching session on using the BodyBugg to get the best results.
Ok, off to get busy and I will keep logging my BodyBugg Journey a little later. =)

New Days?

2011-01-05T10:43:00.001-06:00

If I make everyday a new day, then eventually every new day will become a new year and eventually every new year will become a lifestyle.

Been a while....

2010-12-29T23:23:00.002-06:00

I have all but forgotten this blog.

This semester has completely overwhelmed me. But I tackled it and have emerged from the other side somewhat victorious. My oldest daughter just turned 10. I am so proud of her. It's odd watching her turn that corner of being a little kid to starting to understand what this world is all about.

Kimber is 7. Her geneticist is pretty sure she has whatever mitochondrial disorder this is that I have. We have discovered, interestingly enough, that my husband's grandfather had Marfan's Syndrome, as does two of his male cousins. She is going to watch Kimber for this sort of possibility, but is more convinced it's mitochondrial in nature.

We have seem some changes, good and bad, over the last several months. I have continued to learn how to live in this spiraled state. There are definitely good and bad days and I have become better at predicting which it will be early in the morning. And while the supplements and physical activity changes have made a difference overall in my downward spiral, I have still had to find coping skills for the daily basis.

School is that forward momentum that I feel like I still have. I just finished 4 classes, have another 4 next semester. I am looking forward to High Acuity RN starting in January. I love the adrenaline from a urgent situation. Note I say urgent because the one true code blue I was a part of, while very successful in saving the life of that child, was when I was very early in nursing and I don't feel as though my performance was par 100%. But, it was my first and I was new, and I am sure every nurse can say that about at least one. Since then they have mostly consisted of emergencies on the verge of being life threatening, as apposed to true life or death. After next semester my BSN will be complete and I will be several classes into the MSN portion. No longer will "online" be an option. I am praying this does not damage my health or abilities, but we will see. I'm sure it will be a little different since I am not working.

My kids don't fully understand the changes that have happened in our home since January 2010. I have stopped working, disability... My husband is now a reserve officer at a distant police department. It's natural for me to think of him as an officer. Even though he went 5 years without a badge, I will always remember him that way. However, 3 of our kids do not remember him as an officer. They were shocked, even a bit nervous when he came out in full uniform, having shaved off his go-tee and cut his long hair back down to the 2 inches that I remember it at. It didn't take long for them to get used to it. My son talks about it all the time now. He wants to have a "giant police car" like his daddy. That feels good.

I am learning a lot about myself. I have spent the better portion of the last 10 years either pregnant or having an infant. Now all of my children are potty-trained, one has ipod buds glued to her ears while reading novels... So now that 3 are in school and I am home alone with my son, I have had some time for soul searching. I was 18 when we got married, 19 when I got pregnant the first time and had a 1 year old before I ever got my driver's license. Like every 18 year old, I thought I knew who I was. Boy was I wrong. It turns out that I knew who I loved, I knew what I wanted to do, and then every year thereafter I devoted to some other cause or soul aside from my own, to the point where my still developing self was lost in translation. But, here I am. Who? Me. Who? I'm not really sure. I'm a mom, I'm a nurse, I'm newly disabled, I'm married and love my husband, but other than that who am I? If God stripped away all of that, who would I be? That is what I am after. I remember who I was, although I never appreciated it then, so who am I now?

Who am I?
My name is Trish. It sounds foreign rolling off of my own tongue. I love the fall and winter, although every year I feel as though it passes me by far to quickly. I miss the ocean so very much. I hate exercising, but I love other physical activities like canoeing, kayaking, bike rides, hiking the waterfalls and other things that I almost lost the ability to do this year. I love fuzzy blankets and socks. When I "feel bad" my muscles get very weak, my eye droops, even my waistline expands because the muscles aren't holding things in properly. But not many people notice, and in some ways I like it that way. I have lost 15 pounds since September (not a lot for some, but great for me). And now I am getting tired, so that means it's bedtime. It's nice to meet me finally and I am looking forward to getting to know me better over the next year. =)

Two more weeks!

2010-08-03T14:03:00.004-05:00

School starts for my girls in two weeks! I can't believe it! Time has flown by so very fast! Amy starts kindergarten this year... She says "But what if I can't stop sucking my thumb..." She's been a pretty tough one to break of that. Any ideas that won't traumatize her? She sucks her thumb when she's nervous or tired. I can tell that she wants to stop. When she thinks I'm not looking she takes it out of her mouth and gives it the evil eye as if to say "Why are you so goood?" Haha

On the 28th is Kimber's birthday party! We usually don't have big hooplas for birthday party's because we have four kids and doing a big celebration for every birthday adds up... But this time we decided the kids had a fairly boring summer (by their own guidelines) and we should turn it into a birthday/back to school party. We reserved a bounce house, and will swim and grill out and just have a blast. No pressure. Food, pool, jumping, it's all fun. I can't wait. I've been experimenting with some scratch cake and icing recipes. The cake part has been a little harder, but the icing recipes have been marvelous! I decided to do cupcakes, chocolate with fudge filled center. The icing will be two different kinds. I'm going to line up the cupcakes in such a way that they look like a beach scene. I found a mouth watering peanut butter cream icing for the sand (with a little bit of crushed up toffee bits for added scenary, and then a very yummy buttercream icing in blue for the water. Then some of those cute little drink umbrellas on the beach and some flip flops, shells, crabs, etc, made out of modeling chocolate and fondant or gum paste. Perfection! It will look so good it'll be hard to eat!! NOT!

I printed off several pages of flip flops for the girls to color and we can hang those as part of the decorations! Cheap, fun and memorable. I found flip flops on clearance at Walmart for 50 cents a pair. So I bought 4 pair and tied ribbons and tulle to the straps. nice table/counter decoration that my girls can wear afterward! =)

No such luck...

2010-07-30T17:53:00.003-05:00

I guess surgery for the parathyroid tumor right now was just not meant to be... The doc I went to was very not nice. He got nasty with me and raised his voice even. I have it in the right mind to send him a letter letting him know how unprofessional it was... He just kept saying "why would you want someone hacking on your neck when it won't help you any?" Really? First of all, it wasn't like I asked or this tumor to be strategically placed there so some physician could "hack" away at my neck... Secondly, I was not aware that it would not help me... I did not raise my voice with him, nor did I say anything that a normal patient would have... I simply said "I think we are done here..." and left. Of course I couldn't drive for the first few minutes because my emotions took over and the tears started flowing... All I wanted was for someone to say "Yes, this is what's wrong and I can help you get better." But, alas, I must face that they are not my heros, ultimately God knows best, and He has a plan for me, a goal, and I will face this head on!

My doc enlisted the opinion of another endocrinologist with the results and questions and at least had a great conversation with her, no raised voices... =) She did say that the tumor is not big enough yet to be causing all of the problems that I am having and that although it causes muscle weakness, it does not cause "focal" muscle weakness that I am having. It wouldn't cause seizures or trouble swallowing. So, she did say we needed to monitor the tumor and hormone levels with consideration to remove it at a later date.

I have finally given in. I have been so desperate for God to just show them something that can be fixed quickly so that I am not faced with living this way for so long. But I am facing it now. Ehlers-Danlos Syndrome and a Partial expression Mitochondrial or metabolic disease. Both are things that I will learn, with the help of God, how to live around. I will not give in to them, they will not define who I am, but I will learn how to turn them into praise! I will take what God has given me and allow Him to turn water into wine!

So, Happy Birthday to me. I am 29 today and I am going to turn a new leaf. I am not as fast, steady, tough, put together, or patient as I once was, but this will not take over. I will learn how to be a new me, with new goals. I will see it to the end and know that God is holding my hands and heart the whole way.

So Be It.

2010-07-23T09:51:00.002-05:00

Earlier this week I had a scan of my parathyroid glands looking for a tumor... Like I thought, the scan didn't come out clear enough to make it definitive, but the CT done to aid in the scan did. It showed a small nodule on the backside of my thyroid gland (which is where the parathyroids sit).

The redraw of parathyroid hormone also came back high again, so I will be keeping the appointment with the surgeon on the 27th, in which my doc sent him a letter explaining why we needed to try and get it out before the 31st when my insurance is gone... That leaves surgery dates of Wednesday or Friday because he has clinic on Tuesdays and Thursdays. I am praying that he will fit me in this week. It has been such a long road and I am getting weary. Friday is my birthday. That would be a Happy Birthday to me! God knows what is best. I have trusted Him all along, and I will continue to trust Him to do what is best for me and my family. =)

Feeling the pressure-So to speak...

2010-07-19T12:43:00.002-05:00

I had a parathyroid nuclear scan done today to see if they can spot a tumor responsible for high parathyroid hormone... It wasn't comforting that the technician kept saying "I don't understand.. why does it look like that..." or she kept getting her colleagues to look at the picture and they kept saying, "Well, have you asked David about it yet?" Not that I would know who David is, nor did she ever ask David, which didn't really bring comfort to my racing brain. So here's the likelihood: The scan was not a good image, someone screwed up the setup, and they will find nothing on it... Isn't that an encouraging reason to get injected with radiation?

Here's the next kick in the nuts, so to speak... The general surgeon couldn't see me until next Tuesday the 27th, which certainly means no surgery before my insurance runs out on the 31st............. So, still waiting to hear the results of the repeated labs, and if this scan does turn up positive I will be sitting with the thought of a tumor that is slowly eating away at my bones and making me weaker and crazier by the minute and no hope of having it removed because I have no insurance... God, I know you are bigger than this scenario. Please fix it...

Lumbar Puncture is a pain in the... Back! haha

2010-07-15T00:29:00.002-05:00

I bet you thought I was going to say something else! I almost let it slip after the first attempt though!!! I am very grateful that the resident doing my lumbar puncture #1: did it under fluoroscopy so she could see everything!!! #2: listened to me very well about how EDS causes anesthetics like lidocaine to be not as effective! So, she double dosed the first time around, but was oh so slightly surprised to see that when she got a little deeper that there was no numbness and I almost came off the table. After a few more much deeper injections of lidocaine she got the second attempt in just the right place and with much less pain than the first attempt. While she was collecting fluids I did get a chance to talk to her about minimal chiari's from EDS and cranial settling and retroflexed odontoid, and I think I peaked her interest to do a little more studying than just what she was taught in school!

Unfortunately I am still feeling the affects of the first attempt, as she did say she was trying to work past some bone, in which I think she hit... Bone pain is very recognizable... I had a spinal headache up until a little while ago. My hunny gave me lots of caffeine and I have been laying down flat since.. But I needed a break from the flat position, so I figured I would blog about it... Sitting has been very difficult. I make it about 10 minutes and then the bones where she was really hurt some kind of terrible... And no, meds haven't even touched it. Laying flat helps... hahaha

She was able to tell me that the opening pressure of the CSF was normal at the time. I really wish some more docs would publish studies on retroflexed odontoids and the differences in upright versus supine (laying down). Although the Chiari Institute did publish one, it really only focused on the chiari of the patients extending from cranial settling and didn't discuss RO and brain stem compression at all. It is sad how little evidence there is and as you know, all docs will go on is what there is evidence for... That in and of itself is sad. If the doctor who transplanted the first heart only went on the research there would have never been heart transplants...

Oh well, such is life. I am getting labs done this week to recheck the parathyroid hormone, just to make sure it is a true culprit and hoping it is not to late to fix it because my insurance runs out at the end of this month. Happy Birthday to me, that's right, it runs out the day after my birthday... =P

Questions+Answers=More Questions... You do the math...

2010-07-14T00:55:00.004-05:00

I got the call from my doc today, you know, the one they give you when your labs come back... All was normal except two: one of the liver function tests (blamed on that darned fatty liver...) and the Parathyroid Hormone. Hmmmm... That's a new one. We had done thyroid tests before, all normal, but what physician does parathyroid tests? Well, come to find out the answer is usually only the ones looking for reasons for high calcium levels.

The parathyroid glands are 4 very tiny grain of rice sized glands on the back side of the thyroid gland. They have a similar name, but serve a much more different function than the thyroid gland. Blame the name on the location I guess.
This gland controls the amounts of calcium and phosphorus in your body. If you happen to neglect that glass of milk, the PTH kicks in and asks your kidneys to be stingy and keep some in your blood.

One thing I have learned: high calcium, even by small amounts is NEVER ok, and is a sign that you could have a problem with your parathyroid gland. My calcium levels have always been "normal" but they have always been on the high end of normal and it amaze me how one labs interpretation of normal can be so many points different than another labs, so whenever labs are mildly abnormal I have an instinct to never trust them. It has always been my nursing judgement that any lab that is very close to being abnormal should be considered that way until proven otherwise, forget this innocent until proven guilty stuff...

So what symptoms come with high PTH? Well, according to all the reading I've done there are muscle, joint and bone pain, heart palpitations, stroke (as a very late, almost to late sign...), osteomalacia and osteoporosis (loss of bone mass), muscle weakness, including in the swallowing department, headache, nausea, vomiting, thirst, increased urination, constipation, kidney stones, confusion, impaired thinking and memory, irritability, and a few more...

In most people with hyperparathyroidism the PTH and Calcium levels are high, but it appears with mine, (as nothing can be done the easy way with me...), the PTH is high and the calcium is on the high end of normal.

Most of the time the high PTH is caused by a benign tumor on one of the 4 glands, very rarely by cancer and even more rarely by genetic disposition. Fixing the problem would be: drum roll please..... Taking out the gland with the tumor... =) Duh.
Surprisingly, it can be done laparoscopically with a 1 inch incision that generally only requires a steristrip over it afterward. This particular procedure can be done in 30 minutes and often doesn't even require a hospital stay.

So what's next for me? Well, since my labs are never cut and dry, I will probably be doing a repeat of the labs just to make sure, and a 24 hour urine for calcium content and also imaging of my parathyroids to look for the tumor. Everything I have read says imaging is pointless and a waste of time, but that's what the good doc wants since the labs were off, so we'll see.

So if there is a tumor the next step after that would be surgery to remove it, and she seemed confident we could get it done before my medicaid runs out July 31st... You see, in August the disability kicks in, that means my "income" will be to high for medicaid, but I will not qualify for medicare for 2 years, nor will I have insurance... So, if this is the answer I have been praying so earnestly about and nothing can be done about it because I don't have any insurance I am going to be highly upset... Or at least moderately irritated.

So the final thought from Dr. O? EDS+Hyperparathyroidism=A very bad year for me... =)

Interesting the medicine I have learned about in such great detail this year. I could work in neurology, endocrinology, metabolics... I love putting the pieces of the puzzle together to fit! If I had an MD behind my name I think Diagnostician would be my game. =) Oh well, we'll leave that to the bigger egos.

Conquer Chiari Walk Across America

2010-07-11T15:03:00.003-05:00

The migraine that eventually led to my diagnosis of EDS and a very miniscule chiari malformation has caused me a great deal of heartache over the last year.

Well, I have decided to turn that into something better. =)

My oldest daughter is 9. That's a great ripe age to introduce kids to community leadership and giving and charity. So we did it.

I signed them up for the Chiari walk which is in Plano, about 30 minutes from us. I made Nikki the team leader and she is so excited! We made a fundraising goal together, she wrote a letter for support and why she has decided to participate and we are on our way! I am so excited. The walk is September 18th, 2010. The walk takes place all over the US on this day, and the money goes to fund research and education for chiari and syringomyelia.

Ehlers-Danlos Syndrome poses a particular risk for developing these two issues. The joints in the cervical spine are loose, connective tissue loose, and sometimes it's like a limp noodle trying to hold up a bowling ball. It has a hard time supporting the head, which "sags", as my oldest daughter worded it, and the result can be an acquired chiari malformation, brainstem kinking from a run-away odontoid bone and so many symptoms of misery.

We named our team the Zebra Kids and so far it consists of me, Nikki (9), Kimber (6) and a new EDS friend. She is walking for her best friend who has a chiari. We are still recruiting, and thanks to the Conquer Chiari website all donations we collect can be made on their website!!

If anyone who reads my blog is interested in supporting our little Zebra Kids Team you can go to the website and click on the "Sponsor a Walker" link on the right.
Pick our location, Texas, Plano
Then pick our team or Kimber or Nicole Tolliver to sponsor. Your donation can be made on the site.
And remember, even the small amounts add up in a BIG way!

www.conquerchiari.org

Goals and helping others can keep you going when the walls feel like they are crumbling! =)

Blogs for Doctors?

2010-07-08T21:11:00.003-05:00

Sometimes I wish I could create a totally separate blog for my docs to read. For some reason when I have an appt I never tell them everything. I forget, or somehow I get caught up with one thing. Today I was trying so hard to describe to her what I felt, but all I could think about was the symptoms at that moment. I remembered a few things here and there, but everyone with a chronic multisystem disorder knows that there are so many, and the one you forget to tell them could be the one that is most important... It makes me want to audiotape every time I feel something like when a journalist takes notes. Then I could just replay it to her in the office. =) She drew a lot of blood today. And of course I got the usual: it only makes sense that you have EDS and mito disease... When will I give in and realize that EDS and mito disease are my answers? Denial can be a cruel way to keep yourself going, because I am pleading to God to not have to live like this for any length of time. At least with denial I keep looking, keep the hopes alive... Of course denial prolongs the moving on... I need the moving on... Sooner rather than later.

Just a tidbit of an update.

2010-07-01T15:42:00.008-05:00

The neurologist called and said the mitochondrial microscopy showed normal structure for mitochondria.

Dr. O is going to do a slew of labs, some looking for an interesting disease called Wilson's Disease. Like everything else I have tested for, Wilson's Disease is genetic. It is a genetic defect in the liver, causing it to lose the ability to process copper appropriately. When that happens copper builds up in the liver, kidneys, eyes, and brain. Excess copper causes psychological and neurological symptoms like mood changes, tingling, seizures, etc. In the liver you may not see symptoms until it is severe, thus causing cirrhosis, fatty liver, liver failure and a change in liver function tests. It can cause defects to occur in the connective tissue in a certain number of patients. Other problems include swallowing difficulty, speech difficulty, brain fog, anemia, low WBC's, and others.
One of the diagnostically most obvious signs of Wilson's Disease are the Kayser-Fleischer Rings that develop around the cornea edges of the eye. They appear as a brownish color or even sometimes a greenish-brown, reflecting the color of the build up of copper in that area.

I don't think this is it, but I have had abnormal liver labs, and most of the symptoms attached. I don't think I have the Kayser-Fleischer rings, but in most patients they don't show up visibly to the naked eye until the copper build up is very severe. I have an eye appt set up for July 13th to look for this or other eye problems that might help explain what is going on. I am utterly surprised that the eye doctor I went to last year did not find anything wrong since I have such an array of eye symptoms like crazy flashes of light, night blindness, trouble seeing in the dark, floaters, blurry and double vision at times, eye pain and pressure. But I have been told before that these can also be explained with any number of neurological problems.

I read an article, and I so wish I could remember where so I could give credit where credit is due, saying that caffeine and chocolate help the kidneys excrete excess copper, which would make sense if that is what it is. It would explain why I feel "normal" rather than supergized after a Monster or two. Or why I crave chocolate so much, but never any other sweet and why the craving is intense like thirst. This thought is confusing to me because the NIDH article I read states that chocolate is high in copper and should be avoided during initiation of treatment. Maybe it is the caffeine content in the chocolate that helps? I don't know. In the unknown article it described how the adrenals are also affected by excess copper, although I can't remember the outcome from my lovely brain lapsing. I do remember it mentioning Cushing's and Addison's, so that is interesting.
But, like I said, it doesn't fit everything, just an educated guess very much worth investigating because without proper treatment it is life-threatening from liver failure.

Treatment is a medication that assists in removal of excess copper and in very mild cases zinc does the trick. Even as a nurse, I didn't know that zinc plays that very important role in our body. It's amazing how we must maintain the very specific balance of mineral and vitamins in our bodies for optimal health and how one negative tip of the see-saw can be so catastrophic. If it is left unchecked for to long the result may be a need for liver transplant. And ironically, liver transplant will "cure" the genetic disease because it exchanges the injured liver and it's defective genes with normal liver genes. How strange is that? But, medication is first line treatment over liver transplant. If a person is diagnosed with it all first line relatives should be screened.
Lifelong treatment can control the copper buildup, but questions still exist as to whether it eradicates the damage done by the copper build up. Some studies suggest that as much as 50% of people treated will continue to have psychological/neurological damage and symptoms.

Foods that are high in copper: nuts, chocolate, tap water (especially if copper pipe is used), potatoes, tomatoes, avocados, liver(duh...ewww....), mushrooms, seafood, raisins, any tomato pasta sauces, wheat flours and whole grains, most beans and many more. Normally an adult body can excrete any excess copper if the liver is functioning properly. Certain other liver and bile diseases can cause copper excesses also.

She is tested for other things as well like the cortisol, autoimmune markers, thyroid, etc, just to retest them. She has also scheduled another MRI of my brain, swallow study and esophogram and a neuro-psych eval to test my memory, stress management, etc. The neuro-psych eval is borderline offensive in my book because whenever you think psych eval it automatically leads you to think: crazy, but I understand the importance in that it can help determine how I am dealing physically with the stress.

Last thing is a lumbar puncture looking at the CSF pressures and if there are any foreign proteins, etc in it.
I apologized to her for being a "nightmare" of a patient, and I really do feel bad that I feel so insanely horrible and nothing seems to line up. I have symptoms that lead to "a little bit of this" and "a little bit of that" but nothing concrete, and that is disheartening to both patient and doctor.
I remember all to well at work having those patients. The ones that I couldn't fix no matter what I tried! I would do everything under the sun to help their hurting and it was ineffective. Sometimes with them it was just time they needed, sometimes it was something off the wall and obscure that I would never have thought of in a million years, but those are the times that drove me to want to learn more and become a nurse practitioner so that I have the authority to do the tests needed that doctors would refuse me until I pleaded with them and they gave in on the grounds of "getting the nurse off their back". Most times i was right in the testing, but patient advocacy was my job, to fight for their pain until someone would listen to me and fix them.

Being on the opposite side, being the patient needing advocacy and trying to realize that I am worth fighting for is new territory to me. I always ask myself: How far is to far to push for help? When do I "give in" and accept that they may not figure it out? And it's that mind set that makes me remember that I do not have to settle for feeling mediocre instead of at my best!

Physical mediocrity is not me at my best.

Update 7/13/10: No Kayser-Fleischer Rings per the ophthalmologist, no copper abnormalities per my doctor, so no Wilson's Disease. Thank You God!! =)

The medical community that reacts...

2010-06-23T21:02:00.002-05:00

In the beginning of the history of medicine doctors were reactors by simple nature. They did not have the same extensive knowledge about the body, how it works and the many many things that can go wrong with it... And, at the time, it worked for them. Their job was to take symptoms, put them together and figure out how to treat the symptoms because causes were not always known then. If you had a rash, the doctor gave you a serum or herb or cream to soothe it. If you had a fever and a cough, they did the best they could, maybe it was a problem in your blood: Lets bleed you... See what I mean?

Physicians today sometimes seem to carry that same mindset. Thankfully today we have more diagnostic tools and sub-specialties to keep them in check with basic diagnoses. But those advancements didn't come from doctors with the "lets just treat the symptom" attitude. They came from curious, never-quit, questioning the "rules", overcoming the boundaries physicians that decided that just treating a symptom was not good enough for their patients! If it weren't for these docs we wouldn't have IVIG for Dermatomyositis and other autoimmune diseases. The heart transplant would be Science fiction, and a face transplant would be Frankenstein! If it weren't for rebellious minds that wouldn't crack under criticism, Dr. J wouldn't be placing titanium ribs in kids to keep them breathing despite deformities.

It's to bad these doctors are not the majority. Then people with symptoms that don't quite check out right would still have a fighting chance to get better early. Unfortunately with some diseases the fighting chance comes by when it is in late stages and recognized because of it's severity.

2010 is a different time than 1600. The internet makes knowledge available to the patient as well as to the physician. Some docs think less of the educated patient. Hypochoondriac. It's to rare. You shouldn't believe everything you read.
And in some aspects they can be correct. It does create a tension between a patient and a healthcare worker if the patient is convinced there's more than just a cold. But how many times have we seen this story and it be the outcome? If it didn't happen excellent TV shows like Mystery Diagnosis would not exist... In medical schools across America they are taught "Think horses not zebras" because horses are the more common obvious answer. It is sad that most physicians took this way to serious and they throw the zebras right out the window like they do not exist. I am in school to extend my degree. Nurse Practitioner is my goal. I saw this limited blinders perspective in my very first class, Differential Diagnosis. They even used the phrase, "If you hear hoofbeats think horses not zebras." And drilled it into us that because things are so "rare" they should not be in the first line of thought. I wonder how many cancer patients were diagnosed in stage 4 because of that thinking? At that time I had already been diagnosed with Ehlers-Danlos Syndrome, another zebra in the medical world. Something that was supposed to be so "rare"... So my heart sank when I heard them say that in class. Now don't get me wrong, I'm not saying every patient that walks into the room with a cold has West Nile Virus, but if they show the signs shouldn't it be considered and ruled out? And even if that is a "financial impossibility" with how insurance companies run our healthcare... shouldn't the physicians who are capable of diagnosing a common cold also be up to date and capable of diagnosing West Nile Virus? When I first decided enough is enough I found a primary care doctor. He was a very nice doctor. I would like to think if I had diabetes he could treat me for that, but he witnessed the first seizure I ever had. He said it wasn't a real seizure because I never lost consciousness and because I didn't soil myself. Do you know I don't know how many seizures I may have had between March and October. In October I had Petit Mal seizures, staring and somewhat myoclonic in nature. And when I realized it was the exact same as the one he witnessed in March and called a "pseudo-seizure", I was appalled. How could he not know that there were more types? How could I let him convince me that they were pseudo and just my body's response to pain? I knew in my gut that something wasn't right, but I trusted him. In my opinion, and that is just what it is, my opinion, if a doctor does not know the details of what he is diagnosing, he should not be allowed to make the calls on it at all.

So in saying that, I am thankful that my neurologist told me the other day that she just doesn't know enough about Cushing's disease to even test for it and that it sounded like a real possibility and that I should see an endocrinologist that knows more about it, and at the same time I am nervous about the primary care doctors who test for Cushing's but really do not know enough about it to understand that not everyone shows the "late stage" signs. In fact , people can go years and years with mild signs, and not even have some of the hallmark signs, especially if they are Cyclical or Mild. Same for EDS, mito disease and all of the mysterious elusive "rare" diseases that usually turn out to be not so rare.

When will the basic doctor accept the educated patient? Instead of acknowledging their thoughts (some don't even do that) and tossing them to the wind after the patient leaves, shouldn't it be that they are investigated? I mean that is how medicine advanced, through profound discoveries that took research and drive. The common mindset of "react" has been passed on through generations of physicians. What about "acting" instead of reacting? Do you know how many times in my career I have heard from physicians, "Just keep an eye on it" when I reported an abnormal finding? Really? And then they are discharged, never to have that problem checked out. Really? Sometimes it made me want to have the authority to actually do something about it... Do you know that up until I mentioned it my daughter's joints were never even checked, no range of motion checked. That is part of the basic assessment we learned, so when did it fall off of the charts?

Anyway, I felt this need to put that out there because my muscle biopsy tests came back as normal mitochondria. So I am sitting here with the thoughts that instead of being tested for a wide variety of things like I asked, I was tested for only a couple and now that months have passed by, and the result is back as normal, well, now I am back at square one. I am the educated patient. Insurance issues due to my worsened health has made it so that I do not have the freedom to seek out multiple opinions and different fields without my docs approval. If you are reading this and you have ongoing health mysteries like I do, do yourself a favor and procure a PPO. Excellent insurance and trusting your gut will get you better much faster.

IS THIS THE CULPRIT??

2010-06-19T11:24:00.003-05:00

My poor kids are blistered and I am on the hunt in the yard for the culprit. I am no hoticulturist and one plant looks like the next to me... Is this Poison Ivy or Poison Oak? I can't tell. Please, all comments are appreciated!!! I need to find all the possible plants and get them out of my yard!!!

Swimming the pain away...

2010-06-17T20:32:00.005-05:00

I love to swim! The pressure and difficulty in walking is gone when I hit the water! I feel the workout, feel the muscle strengthening with half the work and much less pain! The kids especially like when we make a whirlpool, which involves me running in circles around the edge of the pool. It's a great workout. But it feels more like play! Drained from the sun, hours afterward my muscles are letting me know that we definitely did some work today.

My 3 year old son had an appt yesterday with the developmental pediatrician. We had a very rough pregnancy with him. Everything from subchorionic hemorrhaging (placental bleeding), to low hormones, to preterm labor at 30 weeks (stopped eventually) to questionable heart issues during labor and a very floppy baby born... He was small, 6 pounds even and 18 inches long. When he was 4 months old his head growth almost stopped. From then on it only grew about 1/2 cm every 2-3 months. And some things were a bit delayed. At 7 months old he still had overriding sutures (skull bones) like a newborn would have which is supposed to disappear by a week old. He was a little late on his milestones. The developmental doc saw him at 7 mths and at 18 mths and said at his 18 month appt that although he was making headway that his head was still very small (in the negative 5th percentile) and that we weren't out of the woods yet. And then yesterday I was amazed at her reaction. It was like she was seeing a new child. He is still a little behind in some things like verbal and some very mild cognitive skills, but he has improved 10 fold everywhere else! He is 3 years 4 months old and tested right on track for motor skills and at 3 years 1 month for verbal skills. Excellent! She suggested a preschool setting in the fall for structure and learning. She also noted that his learning style is very physical and thinks we can really use that to get him on track with his cognitive skills.

I am truly amazed at the wonders of God! When he was 5 months old we were being told that he had microcephaly (which he still has) but that they didn't know if he would grow or develop or ever sit up on his own. He postured his arm and hand like an infant with brain damage. But God promised Josh would accomplish great things, God has brought my baby boy up in what looked scary and turned it into a wonderful thing! No more posturing! He still has the same joint issues as me, loosy goosy in a lot of them, still clumsy, and his head is still in the negative 3rd percentile, but he is so intelligent and is very much a little person of his own! Amazing! Thank You God!

Not working!!

2010-06-14T13:31:00.003-05:00

I have been journaling everything that goes in my mouth, daily weights, exercise and daily waist measurements. For the last 2 days the site has been down, and I am getting a little annoyed. It's been nice to have everything right there, available. You just look up the food and chart it, and if it's not in the system it allows you to make a new entry with all of the nutritional information so you can save it for later. It's so easy!

Unfortunately it hasn't proven anything yet,good or bad. I have not once gone over my calorie daily limit of 1300, nor have I gone over the fat limit of 30 gr per day. And I cut the carb limit down to 100 a day. I've gone over it marginally, usually around 120. A normal 2000 calorie diet also has 300 carbs, and 60 grams of fat....

The you input your activity and it calculates your deficits and lets you know if you over or under ate. According to it, I should have lost at least 7 pounds since I started... I also input my weight. Every day it changes. Crazy. This morning it was 213, last night it was 215, yesterday morning it was 213 and then the day before it was 210.9. It's a bit upsetting to not understand how my body is reacting. Overall my leg muscles have improved and I am able to do things that I wasn't able to do a few months ago, but after doing them, or an excessive day they give out very easily. I have crazy twitching and firing of the thigh muscles after exercise. It's the weirdest feeling. It feels like it did when the neurologist did the EMG, with the electric firing and twitching. It semi-hurts but is just weird feeling more than anything.

Oh well, I guess a couple of months of this and I can bring it to the doc, not sure if it will matter. =(

Choking

2010-06-11T21:35:00.003-05:00

The pain is stifling God, a heavy fog, no lighthouse in the distance for security.
Darkness, surrounding, smothering darkness.
Physical, emotional, aching, deep in my soul.
Questioning, tears welling, pressing pain.
Heavy, choking breath full of despair.
Uncertainty, self-conscious, lacking self-esteem.
Angry, full of contempt but branded and burning from humble fault.
All the while, knowing in the depths the fault is displaced.
The beauty turned to ashes, swirling in turmoil.
Tossed in raging seas of insecurity are my depths.
Shaking and cold.
Numb.
Waiting. Just waiting.
Finding You, light in the tunnel, fog envelops me.
Fear? No.
Falling in the warmth of God, depths of His Love never ending.
Keeping me from suffocating in this place of Pain.
In You i find peace.

Cut and Dry would be to easy...

2010-06-11T18:45:00.002-05:00

I wish so much that for once something would be cut and dry, black and white, yes or no... I am in a frenzy inside right now. I spoke with the neurologist today who said that the electron microscopy of the muscle biopsy showed no abnormalities of the mitochondria... That's not to say there isn't a disorder of mitochondria, because there have been cases come back with totally normal results and still had some other not well known form of mitochondrial disease. But it does fuel my fire for an answer.

With the neurologist questioning mitochondrial disease and the geneticist questioning Ehlers-Danlos as a total cause, and my total clinical signs of Cushing's Disease but fluctuating lab tests, how can I not go into a frenzy in my brain? I just want one thing to come out black and white! No gray spots, please...

And after talking to both my primary care and the neurologist, it seems that the "fight for a diagnosis" is coming to a close and being replaced by the "lets just get you into physical therapy and get that swallowing problem fixed with therapy..." Really? Does anyone not see the reason why they need to know the underlying cause of those problems before the 2ND lame attempt to work on them? Do they not remember me going through 2 months of physical therapy with no improvements? Oly now for me to continue what I was taught in therapy on my own and discover that on the good days I can do the therapy and more, and on the bad days I fight to stand up???? Does no one else see a reason to figure out why before wasting more precious time on therapy instead of on figuring out the answer??

I have a sudden, same old feeling of aloneness, abandonment, where I must do the research, the work, the begging and pleading for tests, alone, by myself, AGAIN.... Why has no other physician tested any other hormone labs? They know I'm off?

Don't get me wrong, I love my doctors. If I had what they specialized in I would trust them with my life, and when I thought they were right I did trust them with my life. I will ask for the referral to the endocrinologist. My PCP told me she would make the referral anyway, so I will pursue it. I will not bother them anymore. My PCP asked that I keep "her updated on my progress" via email, and I cant help but laugh because there will be no progress when there is no diagnosis or treatment. I do not see PT as a treatment because on good days I can trump the PT regimen and I know the PT will see that, so what good is it?

I feel as though I have been tied to weights and thrown down into the bottom of a well, raining outside, and now I must figure a way out before the water fills it and I drown. God is my ultimate physician, my ultimate rest and peace and the answers to my questions and now I am back to square one, on my knees and pleading my case to Him. It feels as though I have been waiting for Him to move for a long time now. It's like the previews in a theater. Just when you think it's your movie coming, you find out it's just another preview.

I have never been known to take the easy road, not purposefully of course, it just seems that is my nature; To take the long, bumpy, treacherous terrain up the mountain to the waterfall. Why can't I seem to get the waterfalls that have bridges or stairs? I guess in the long run it will make this waterfall that much more satisfying to finally reach. I just hope it's not bittersweet and to late.

Yup, mildly disappointed...

2010-06-10T10:28:00.003-05:00

Dr. O sent me an email this morning saying my lab was normal. She didn't give me numbers like she usually does, so I requested them. She's convinced with one lab that's not it, so now what? I have read many cushies who have never had a high UFC, so decision time: pursue it or not?

And Now We Wait...

2010-06-08T15:51:00.000-05:00

Have I ever mentioned before how much I hate waiting? Every second ticks by so slowly when you are waiting for something... I finished my 24 hour urine test this morning and dropped it off at the lab, made sure she put it in the refrigerator and so now we wait...

I am trying not to get my hopes up to high. I am saying over and over in my head: it's going to be normal so don't be disappointed. And that way when it's normal I won't be down and if it comes back abnormal then I will be ecstatic (quietly on the inside... hehe)

In the meantime, I guess I could try and fill each ticking of the clock with cleaning the house... It has been slightly let go in non-entertaining areas... and even the entertaining areas have little sticky finger made piles of toys stashed behind the couch...

So, I will post again either with much excitement or mild disappointment in the results.

Back in Business!

2010-06-07T19:22:00.001-05:00

Blogspot is finally up and running again!! Yay!!

I started my first 24 hour UFC this morning to test the levels of cortisol. UFC stands for Urinary Free Cortisol. It measures those not bound to any other proteins, which would be free to wreak havoc on a poor souls body!

Cortisol is a steroid hormone produced by the adrenal glands that has many life altering roles in the body. Without it would be imminent death. Too much of it, however, causes just as many physical problems and can also eventually lead to death from some of it's many "symptoms". I refer to symptoms in such a manner because in the medical world those very symptoms are also stand alone diagnoses, such as diabetes, hypertension, obesity and many more. You put all of these together and you just have another fat person, right? Not always. As is the case with Cushing's Disease/Syndrome.

The pituitary gland is the master gland. It produces many of the hormones, or prerequisites to the hormones that sustain us. It's location: straight back behind the eyes nestled up next to the brain.

The tiniest of tumors in the pituitary gland can produce to much of the prerequisite ACTH. This hormone signals the adrenal glands (located on the top of each kidney) to release the appropriate amounts of cortisol to help battle stress, illnesses, control blood sugar, metabolism and gastric secretions for digestion, regulate electrolytes as well as many other affects in the body.

Cushing's Disease results from a tumor in the pituitary gland or an ectopic tumor (tumor found elsewhere as in the lungs) causing to much ACTH which in turn causes to much cortisol release from the adrenal glands.
Cushing's Syndrome results from a tumor or other defect of the adrenal glands themselves causing release of to much cortisol.
Also Hypercortisolism can come in the form of long term steroid use like that in people with asthma or Lupus.

Unfortunately diagnosing Cushing's is not often cut and dry and requires numerous tests of blood, urine and saliva. It seems cortisol is a hormone of habit and has a very specific pattern called the Circadian Rhythm. With this rhythm the cortisol levels will be most in the morning, 8 am, with a half decrease by 4 pm and should be close to zero by midnight when the body is resting. With Cushing's people lose this rhythm and levels do not always decrease to the "norms". A person may have multiple urine tests turn out normal and have several midnight tests turn out abnormal. The other issue is that with Cyclical Cushing's the person experiences excess in cortisol levels in cycles. They may go days between cycles or weeks or even months and if it is not caught at just the right time during the cycle the lab work will appear normal, while the patient suffers quietly.

This post is getting incredibly long isn't it? I will go into more details at a later date.

So the big question: What does it look/feel like?
Symptoms commonly associated with Cushing's are:

-obesity primarily located at the abdomen
-a buffalo hump (fatty hump) on the back of the neck
-rounding of the face referred to as Moonface
-fat distributed around the neck/under the chin
-striae (stretchmarks) that are often pink, red or purple
-reddened face
-acne

-thinning hair, oily or dry hair/skin
-hirsuitism (excess hair on face, arms, legs, chest)
-insomnia, depression, anxiety
-high blood sugar, high blood pressure
-heart arrhythmia
-flank pain, joint and muscle pain
-proximal muscle weakness (larger muscles closer to the trunk like the thighs, upper arms, abdominal)
-infections/poor wound healing
-brown discolorations of the skin (with an excess in ACTH)
-blurry/double vision and pain behind the eyes (mostly with pituitary tumors)
-headaches
-menstrual irregularities
-reduced libido...sorry fella...

Pictures are worth a thousand words, but in this case are way to embarrassing to post, so if you are morbidly curious beyond the drawings, just google image or bing image Cushing's Disease and you will see examples of many of the symptoms listed. When I am feeling a little more dangerous I might post some examples of how I fit that mold. But, not feeling to particularly dangerous tonight... =)

One of the reasons diagnosis can be so difficult is that not every person will experience all of the symptoms. With so many of the symptoms being caused by other diseases or just plain unhealthy lifestyles, many suffer at the hands of Cushing's for years without diagnosis or treatment.

Unfortunately people suffer great embarrassment or shame at the hands of physicians when they are told over and over that "it's all in their head" or they just need to lose weight. The problem there is that attempts at weight loss are minimally affective or a total failure, not on the part of the person, but as a result of the excess cortisol. How ironic that it really is "in their heads" the docs just aren't listening. The elusive pituitary tumor typically does not show itself on an MRI. It takes a more specific pituitary MRI or IPSS sampling (Inferior Petrosal Sinus Sampling).

There is so much information and so little time to bore you with it, but that is the starters. If my lab results come back abnormal, or maybe even if they don't, I will do another post on treatment and recovery. It seems from all I have read about other's experiences that surgery and recovery are just as brutal as getting a diagnosis. The cortisol has bathed the body for so long that coming off of such high levels can be likened to an addict going through withdraws.

My most wonderful doctor is in the process of referring me to a specialist here in Dallas that deals primarily with pituitary disorders and Cushing's, so I am hopeful. God is my ultimate Physician and whichever way He sends me, I will take it gracefully (trying not to groan so loudly...) and I will use it to help whomever and however I can.

And with that, I need to tinkle and the big orange jug awaits... TMI I know, sorry!

A disclaimer reminder: I am not a doctor!! Nor am I an expert in any manner regarding any medical information I give. I am simply a person struggling to regain my health back. Please seek the advice of a medical doctor and do not attempt self-diagnosis based on my entries. I research this information in the same way anyone could. Once again: To err is human, and well I am very much human. This is purely for information sake on my daily struggles.

Most horrible headache...

2010-06-05T13:27:00.000-05:00

I think last night was the most horrible headache in a very long time!! It hit like a freight train, no warning. My eyes felt like they were going to pop out of my head... The pain was just about everywhere in my head. Crazy. Every time I laid down it would relieve the pressure off of my eyes, but the back of my head would start burning instead... When I lay on my side or front my eyes would pulsate and the pressure was so intense that I could not open the lids...

So I would sit up and that would make the top part feel worse, so I would lay down... And thus it became a vicious cycle of movement just to relieve the pain. Nausea... blah... Then I threw up, out of the blue, no control. I couldn't breathe, my chest was tight... That was the point where I thought it might be worth going to the ER... But another hour went by and it started to calm down a little... I couldn't sleep all night. Waves of nausea and headache and antsy movements... And today I am left with this aftermath of headache and dull eye pain and nausea... I feel weak like I just trekked through a hurricane. I almost wish I had of gone to the ER. Ah well, just another day...

Serum Cortisol

2010-06-01T18:32:00.000-05:00

Dr. Olney drew a random serum cortisol (blood levels) the other day at my appt to see if it is possible that I have Cushing's Syndrome/Disease. I very much expected that the levels would come back absolutely normal and once again my Cushing appearance would just bring on more embarrassment in negative tests... Today the test results came back and although I am not jumping for joy because of such values that would distinguish Cushing's from all others, I was very surprised to know that the levels were a little high.

The problem with hormone disorders is that hormones come in cycles (any woman could tell you that without a medical textbook...). And if you catch the cycle just right you can see the abnormalities, but of course even a person with Cushing's disease will test with normal or slightly elevated labs at one point or another because of the crazy cycling. I guess low levels could be thought of as the day that person "feels ok"... Of course one "slightly high" level does not a diagnosis make, but it does warrant for further investigation. Next step? I will be doing the lovely 24 hour urine collection for cortisol. And hopefully being able to get in to see an endocrinologist that can further test if the results of that are only "slightly" in or out of whack... There is such a serious problem in the medical world when every lab can have it's own high's and low's of test results, sometimes differing in as much as 20 points between labs... Plus there are times when a minimally high means everything and a minimally high doesn't count for squat. Even the average EDSer knows that one. One person with a Beighton score of 6 can be far worse than say me with the score of 8 or 9 (once again depending on which doc you talk to...).

I want to get my hopes up. It would be great to know there is a reason for my wondrous excess that doesn't involve accusing me of eating us out of house and home (which I do not do) or being sedentary. I want to get my hopes up, but I won't. If this is the spark of the light at the end of my tunnel I will rejoice when that gets here, and until then I will keep trudging through, keep doing everything I know I need to do.

Doctor's Appt Today

2010-05-28T09:52:00.001-05:00

I'm nervous. Tired. Nauseated. In pain and ready for this to very much be over. I'll post the results of the appt on this post later...

Yup. Same as usual. I love my doctor. She's great. Drew some blood to test for Cushing's, although I think she did it just to appease me because that's not really how you test for Cushing's... She just said "if the random blood level comes back high we'll do the 24 hour urine test..." Oh well, at least she's willing. And of course I got the carbohydrate lecture. Although I would really like a better idea on how to avoid carbs when I can't swallow much else... Everything that is easy to go down is super high carbs... Oh well to that one to. Just started counting like she said and we'll see how it goes...

Thank God she gave me some phenergan for the nights of throwing up and nausea!! I slept until 12 noon today (that hasn't happened since before Nikki was born)... And she thinks the stomach stuff is just from gastritis from meds... I'm not so sure about that one. It doesn't feel like gastritis but after a couple of weeks we'll see if the meds work or not.

I am very grateful to just have someone who cares.

2010-05-27T13:21:00.000-05:00

I'm standing outside myself,
looking in,
wishing I could tweak it here or there.
Maybe a new hair-do,
a little less weight,
will make it seem a little more fair.

2010-05-26T09:41:00.001-05:00

Thanking God for a totaled car....

2010-05-24T10:39:00.000-05:00

I never thought I would be thanking God for a totaled car. Really, most people think an accident is the worst of the worst. You lose your vehicle, insurance issues, injury, etc. But today I thanked God for that accident. Today the insurance adjuster came out and totaled our car. It can not be repaired and driven for our sake.

Bad? No!

That means the insurance companies will pay off the person we bought the vehicle from, take away the stress of owing him money when we have very little coming in... It will take the stress off of his family for us still owing him money for the car! He can not worry that we were supposed to have it paid off already before I couldn't work... (He's a family friend). And it will provide us with enough money to make sure they don't shut off our lights! For now it is a blessing in disguise. I hated that car. It was more than I wanted to pay for a car, and more than I wanted to deal with, and now it turned out to be better for us in the long run. Had my husband listened to me and gotten a cheap older car, it would have been totaled and we would have no money to live on right now and no car! Perfect. God's timing and ways are absolute and perfect.

Sabotaged by Muddy Monsters!!!

2010-05-22T13:49:00.000-05:00

It's only on the days that I feel at my worst that my kids decide to build mud castles, create mud ponds and turn my son into the mud monster...

You should have seen him! Only now when he's sleeping and my brain is functioning a little more do I realize that I should have taken pictures of his hilarious face!! =) Oh well.

The footprints through the kitchen; globs of mud on the door knobs... Ah well. I spent the morning doing dishes and cleaning the kitchen because I felt well enough to, only to be sabotaged by my little mud monsters!!

I hate using the term "sick" or "chronically ill". I may feel not myself, very much not myself, but I don't want to be labeled like that.

I found some pictures of "the old days". It's comical. I look nothing like those times!!! Crazy. If we had a reunion, I wouldn't go. I would much rather be remembered like that than like this!!! My husband and I were dating then! =) I love to reminisce! I found some old letters he wrote to me during some times apart. It's amazing! Anyway, enjoy the pictures while I go scrub down muddy prints off the kitchen walls... Has anyone ever seen Incino Man? Old movie with Brendon Frasier? Well, my kitchen is like a scene from that movie with the red mud prints and cave man drawings! =)

Can We Ever Really Know How Blessed and Protected We Are??

2010-05-19T23:03:00.000-05:00

Ever since I was a little girl I knew God was there with me. I just knew. I don't know how to explain it, He guarded me during the most difficult of times, sheltered me like a Father would His baby girl. I have sat in the loving arms of God, engulfed in His rest and peace. It is the most amazing, calm, warm and gentle place to be. I have never felt anything like it. I have not doubted in the faithfulness of God. He has always been there for me, through thick and thin, rain and hurricanes in my life. I know He will be there again, even as the attacks get stronger, harder, like Job... Job knew God was faithful, but he questioned God's motives. Job never turned away from God, and the more pain he endured, the more he cried out to God, even if it was to question God. Doubt is a game of the enemy. To make us doubt ourselves, our faith, our very solid foundation. Sometimes I wonder why it is that I still need to see God's hand move when I know He is orchestrating my life. I'm not sure why. Is it because I am scared that He will just let go? When has He ever done that? Never. But still, I feel like doubting Thomas.

Today I doubted, not God's love, or His faithfulness to fulfill His promise. Every set back makes me weary. So is it real doubt or fear? Or are they one in the same? But God knew I would do that before the thoughts crossed my mind, so He chose to give me peace before the doubts came so that I would not worry.

My husband was in a car accident today. He was driving on the interstate and the car in front of him stopped in the middle of the road to avoid a piece of metal debri. My husband stopped in time, but the car behind him did not stop... God showed His glory today. No one was hurt. Eric saw the guy behind him coming, he turned the wheels just enough that when the car slammed into the back of him it drove him around and beside the car that had stopped in front of him, and into the wall Eric went. My God is loving, gracious, and protective. He sheltered my husband from what could have been a very bad accident. He made it so that the car behind Eric did not slam into him at interstate speeds, but went up under the back of our car, then allowed our car to be pushed around the one in front of it instead of being crunched between the two. =) And hit the wall he did, but once again God spared him. All three in the accident were able to walk out of their cars. The air bags never deployed like they should have (they are supposed to deploy at 15 mph collision, this one was 50mph after the screeching brakes and tires of the car behind him).
I have seen accidents on that interstate. Mangled, crumpled wreckage leaving behind broken lives, shattered dreams and hopes that people will live. To be able to walk away unscaved from a three car pile up and not be struck by oncoming traffic at 70mph is a miracle in my books. Maybe the pope needs to witness it himself, but I know my God and He loves us so very much. He is always there, but will show up strong in times when we need Him most. We may not see Him, may not hear Him, but He is there, holding us, protecting us, waiting for us to realize that He never left. He was waiting for us to come to Him.
I have a strange peace right now. One that I know is not from my own power or my own thoughts. Not from trying to be a good person and do things on my own power, but from God. He always shows up just when we need Him, and somehow, right now, my pain does not matter. My husband is ok. And even though our future is very uncertain right now, I don't worry. I don't doubt, because God spared us today and I walk in His peace and rest and remember that He is for me, and when He is for me not a thing in this world can take that away. God will fulfill His promises. He has numbered every hair on my head, knows every emotion I feel and is there before I even realize that I need Him.

I am sure I will doubt again, that's human nature. I will worry, go astray like the lamb in the field, but my God will always bring me back in, show me His love and mercy and let me know that I do not need to be afraid. =)

Peace and Rest and Blessings in the Name of Jesus to all my friends who are hurting, which is pretty much all of them because we all hurt sometime.

Thank You God.

I love them...but...

2010-05-16T17:32:00.000-05:00

Tonight finds me with a great amount of frustration with my kiddos. Their petty arguments and bickering over pieces of paper and imaginary lines of personal space are pushing me closer to insanity! Luckily it is close to bedtime. I love them, but right now I want them to get along and agree to disagree... It seems this is an impossible feat for kids between 3 and 9 years old... I am feeling desperate for the solace that comes with 8 pm, but am afraid that by the time it comes around the corner I will be out of energy to enjoy it...

But that is only a pinch of what I am feeling overall. I know anyone who reads this is tired probably of hearing the same old things from me every time they read... Trust me, I get tired of writing them... But without this outlet there wouldn't be an outlet for me and I would implode like a black hole from the ache in my heart... I want my life back. I want to enjoy things that I used to enjoy! When I was 7 months pregnant with my first daughter my husband and I hiked through the mountains, climbing terrain, trekking around the waterfalls... I miss that so much. Even when I was first "big" I enjoyed jumping on the trampoline with the kids. I am tired of feeling like this. I don't feel like me. I want to feel like me again. How is it that I could walk 8 miles a day when I was 38 weeks pregnant with my 3 year old son, but somehow I can't do it now? I am so very frustrated with being "sick" I just want to feel like a woman again, one who can run and jump and live life to the fullest! I miss volleyball and tennis and swimming and feeling like me. Sometimes when I walk by the mirror I do a double take... Who is that person? With a swollen round face, flat lifeless hair, dull eyes that lack the sparks they used to have... I feel like a piece of silver that needs an amazing polishing. Where did "ME" go? And who is this tired, frustrated, huge painful thing that has taken over my body??

Missing out on the fun!!

2010-05-09T07:55:00.000-05:00

My kids went skating yesterday with their best friend who's mom flew her out here from North Carolina with her grandpa to spend her birthday with her "Texas friends". It was so much fun! Friday night we all had a giant "sleepover" at Theo's house where she was staying. We had 10 kids total in that house! It was awesome! You know with 4 kids you can tell who's fighting and screaming and it gets frustrating, but once you have ten, there's really not that much fighting! hahaha Everyone finds someone to play with, and there's so much chaos and noise and movement that everything else gets blocked out and as a parent you forget which kid's yours. Time flies when 10 kids are together! hahaha. It was a lot of fun. Maybe I should've had more kids! =)

Picnic at the park, then skating at the rink and then pizza and cake and then exhaustion! haha. It was great. I used to love skating! It was one of my favorite things to do! I was very sad not to be able to join them. But, someone had to take pictures! =)
Man I am beat to the core today! Of course with all the pictures being taken I realized just how horrible I am looking... I don't know how to fix it... Oh well.

2010-05-07T14:13:00.001-05:00

I picked this off of a friend!! I thought it was great. I hope you don't mind Kristen!! =)

Do's and Don'ts

1. Don't assume because I look well that I feel well. Looks can be very deceiving. Many days I look good but feel terrible

2. Don't tell me that you know how I feel. No one knows how anyone else feels. Two people with the same disease may feel totally different.

3. We all have various pain thresholds of pain and pain cannot be measured

4. Please please don't tell me: "it could be worse"...yes I know it could be, but I don't need to be reminded

5. Don't decide what I am capable of doing. Allow me decide what activites I can participate in. There maybe be times when I make the wrong decision and if I do I will know soon enough.

6. Don't be upset that you can't ease my problems. It won't do any good for both of us to be miserable

7. Don't ask me how I feel unless you REALLY want to know. You may hear a lot more than you are prepared to hear.

8. Don't assume that because I did a certain activity today that I can do it tomorrow.

9. Do learn everything you can about the disease because the more you know the better equipped you will be to know what to expect.

10. De realize that I am angry and frustrated at the disease...not with you.

11. Do let me know that you are available to help me when I ask. I'll be grateful. Remember I'm stubborn and may not ask....

12. Do offer me lots of hugs and encouragement

13. Do understand why I cancel plans at the last minute. I never know from one day to the next how I will feel.

14. Do continue to invite me to all activities. Just because I cannot bikeride with the gang doesn't mean I cannot meet you for the picnic at the end of the trip. Please let me decide.

Stalling!!!

2010-05-07T13:04:00.000-05:00

Even as a nurse I always hated how slow things happen in the medical world. Well this doctor has to talk to that doctor, but they have to wait until they are our of clinic and they have to talk to the therapist, and heaven forbid they make a decision together as a team in a decent amount of time... Try explaining that to anxious parents wondering why their child's legs can't move after spine surgery... I could do my part as nurse, research the symptoms, make suggestions and ideas to the physicians, take the vitals, get to know exactly what the patient feels and even push to the point of really irritating someone.... Now that I'm not in a hospital environment I hate even more how long it takes for things to get done in the clinic world... When we first started pursuing diagnoses for the kids it took their pediatrician 4 months, multiple phone calls and still, no referral that she promised... We pretty much got what we needed because I am a nurse and new some people who knew some people... Why does it have to be that way? If a doctor says we will be in contact, what does that mean? Does that mean a week, two weeks? When you call them and tell them you are not on medicaid anymore, that you have medicare? what if that takes two more months?? Don't they know that medicaid is there for a reason? That there are therapists, doctors, and even testing that can be done on medicaid?? That's why it's there... So what are they waiting for? What am I waiting for? The neuro mentioned an LP. It can be done with medicaid. What are we waiting for? I have so many things that I want to do! Things that I feel like I have to prove! WHy do I feel like I have to prove myself?? I am the one going through the crapper...... Ugh.

Sorry. Just venting...

Expectations.

2010-05-04T15:47:00.000-05:00

I guess when I walked into the office today it was with the expectations that something would be different; that maybe a light bulb would come on and he would say "aha" and we would start testing and things would move on. I don't know why I was hoping or that. It's never that way in the medical field. I'm not complaining. He was a nice doctor. He was very knowledgable. I am happy they will continue testing when the medicare kicks in. I guess I was just expecting a light bulb to come on and it would out shine all the other ideas and it would be "lets get moving and get your life back". What I got was "The kids definitly have something with the joints going on that seems familial, there is definitly something with the headaches going on that seems familial. I think some things that I thought were important didnt seem so important and maybe that frustrated me. I don't know. But, we are still in the same place as before the appt. More testing on the muscle biopsy that was collected, more blood work when I get in the medicare. I guess in my desparation I was just hoping God would lay it in my lap and say "here it is".

I feel like there were so many things that I was not able to tell him. Ringing ears, nausea, dizziness, important stuff. I am praying he wasn't fixated on the joint stuff. It seems somewhat that way.

He wants the physical therapy and speech therapy (for swallowing difficulty) started back up and then we will do more testing when the medicare kicks in. Well, whatever, One day at a time, one step at a time, I just hate feeling stalled.

Brain Pain

2010-05-01T18:07:00.000-05:00

My head hurts so much tonight. I really could use a babysitter for times like these... I can't breathe and it hurts so much its going to explode. Ok, going to lay down on the coach, veg and hope the kids don't destroy anything or each other....

Nerves

2010-04-29T17:53:00.000-05:00

I must admit, I am a little anxious about the coming up appointments! First because it's a whole new set of doctors. This may not mean much to anyone else, but it means going through the "story" again, symptoms again, a bad day, a good day AGAIn. I guess in retrospect that really isn't that big of a deal, but memory is dumbfounding these days. Trying to organize information in sequence of importance, without forgetting anything is painstakingly crucial, even more so when the smallest things like twitching muscles and ringing ears are key attributes to diagnosis...

The appt on Monday is with a new pediatrician. He will be taking over the care of the kids as a whole. All the referrals, all the check ups... And it will be a well baby check for Josh. There's so much. How do I get it all in one appt?

Then on Tuesday we will meet the neuro-metabolic specialist... It's a big day. We will all be there, all 6 of us... I'm a little nervous too because my neurologist will be there to, and Eric has never met any of the doctors, save for the geneticist. He has so many questions and I don't want to leave his out, but I want to make sure everything is covered. Also, I am still not clear as to if this appt is just for the three kids or am I subject also. I guess we will figure it out. He wanted to see the four of us together, so we'll see...

My head is hurting, spinning. I painted the cabinet in our bathroom today. It looks so much better. Chocolate brown, like a deep brown color. I love to paint. It took me two hours to get it done.

Breathing hasn't been the same since I stupidly decided to spend 5 hours weeding our front garden by my self... Every little thing sets it off. I feel air hungry. There's a tightness in my chest. I don't know if it is muscle weakness or what, but it's not very fun...

Thankfully my husband's drum student remembered to pay today. That will be enough gas money to get him to playing a wedding on Saturday night. Hopefully the wedding will get us a little food money... I can totally relate with Old Mother Hubbard right now... You know, bare cupboards and all... Everyone's knocking... Everyone wants their fair share... Thankfully Well's Fargo is willing to wait another month for theirs, otherwise the van would do the magic disappearing act... I don't know what we are going to do. I know God provides and I'm just waiting to see Him... He's always been a sort of "last minute" rescuer for me... I guess I need that faith building.

Stay in Bed Day 2009 #1

2010-04-27T08:47:00.000-05:00

Gotta laugh at my dumb brain...

2010-04-26T08:39:00.000-05:00

My husband so gently pointed out to me today that I am taking the way wrong dose of my meds... Apparently the serving size is 3 capsules, and that is 1200 mg when I thought it was 1200 mg per capsule.... Drr.... What kind of nurse have I become??? ugh... The UMDF doctors recommend 5000mg twice a day. My doc told me to start 1000 daily... Hmmm..... Well, I have an appt with the specialist on the 4th We'll see what he says.... Just when I thought I couldn't get any more stupid..... Thanks Hunny......

Forced to learn how to slow down.

2010-04-25T20:48:00.000-05:00

I thought I would just say a few things while I am "waiting to feel better"...

It seems that there are times that are worse than others. We all know that. Everyone has them. Otherwise it wouldn't be called the "ups and downs"; "valleys and mountains". God said "This too shall pass". He meant the good and the bad.

So right now (as in the last 2 hours) I am in a very way far down. Let me explain. My ups and downs vary more than a heart in V-Fib... When I'm up I take every advantage of every moment to do things that may or may not need to be done. It's like playing my own childhood game of Red Light-Green Light. The only problem is if I "move during the red light" I am out. Literally. Right now I am out. So, rather than just push it and do it anyway I am going to learn to take the downs for the downs and use "the downtime" hahaha. Clear as mud?

I've subsequently and painfully discovered that if I even try and eat when I am in a "down" that my GI is miserable. Cramps, gas (sorry for the TMI), nausea, vomiting, reflux.... It feels good to be able to pick out that pattern. Before it was like: what happens when???? and I just didn't have a clue! Same thing happens if I try and eat after doing a lot (physically). But on a different plane, if I am studying I NEED to eat. Not just "keep your hands busy" eat, but if I don't my head hurts. Ha. That feels good. One thing down, a million to go.

Discovery: muscle protein shakes for workouts don't help any.
Discovery: energy drinks have a crazy affect, not like energy that people get, wiring type, but normal feelings (until the caffeine crash....) AND I can sit up easier!!
Discovery: I'm a lot more patient when I have eaten and feel tolerable.
Discovery: If I feed the kids closer to bedtime and give them a "quiet time" they don't wake up as much at night.
Discovery: The times Kimber has trouble reading she either hasn't eaten in a long time (like 5 hours) or she has been playing for a while.
Discovery: I love to sing! hehehe. Threw that in there. Never said I was good, but Nikki is!!! I want her to have an album by 16! I love Taylor Swifts voice. Nikki's is similar.
Discovery: Music by itself, smooth, comforting kind like Lifehouse, Taylor Swift, Third Day, Brandon Heath, etc. Make me smile. I feel better.
Discovery: I miss creative writing!
Discovery: I wanna renew vows near a waterfall or rocky ocean cliff, somewhere out of the US! =)
Discovery: All these discoveries make me feel better! =)
Discovery: I want to adopt a special needs baby, maybe even one needing hospice. Maybe more than one. I love them. God knows they need love!! God knows how much I love taking care of them. Hmmmm.

My kidneys and liver are hurting... That's the weirdest feeling to know exactly what is hurting. At the same time. In sync, with my heart beat. Well, at least it's in time with the music I'm listening to. My own internal drums.

A long time ago when I was hurting I would create a dream, I guess like a daydream. A fantasy. It was always where I wanted to be at that moment in time. I could hear the sounds, smell the smells, and feel the warm sun on my face. Usually it was near a beach, on a dock, or in a jungle near a waterfall. Colors were always so vivid.
Lately I think of places with character. Old tiny towns with history, somewhere near the mountains or foot hills. Fall is my favorite season. Golden hues, crisp mornings, bundling, leaves blowing red and orange. Horse back up the hill, around the bend, near the water, jump the fallen logs. Sometimes I wonder if I will be able to do that again.

Couple of weeks, couple of updates...

2010-04-22T15:21:00.000-05:00

I'm not really feeling the gumption to write all poetic like or be creative or even write how I feel. Here's a few updates for anyone who reads my blog...

1. I got my acceptance letter for disability, but payments don't start until August... I am grateful and sad at the same time. The caseworker in the office won't call me back, so I have no idea when medicare kicks in. In the meantime I did get medicaid to cover until it kicks in. Unfortunately none of my doctors accept medicaid....

2. Good news is the mitochondrial specialist that my kids geneticist referred us to does take medicaid. Ironic is that he is in the same office as my neurologist. Bad thing is that he can't bill to the CHIPS my kids have (state insurance) and they don't have medicaid because they had the CHIPS while I was working... He wants to see them anyway, so myself, Nikki, Kimber and Josh have an appt with him for May 4th. He blocked off an ENTIRE afternoon for us! =)

So I am happy about that.

I keep trying so hard to keep myself going. Can't stop, can't give in to this. If I give in I will get worse for sure. Like falling backward on the stairs... It's so much harder to get back up once you have fallen down 2 flights... I keep trying to walk a lot, go to the park with the kids, go to the store, work in the yard. The more I do the worse I feel, the harder it is to breathe and the weaker I am. So where is the line? You know, the line where something has to give? Because something has to give!!! Every movement feels like a coordinated effort instead of the unconscious effort it's supposed to be...

I don't even want to go into the other stressors... Well, yeah I do. I need to vent... We have 45 dollars left in the bank... No more money coming in and I just found out my benefits wont start until August...... Oh please God!!!!! So if you don't see me online for a while, they probably shut it off.....

I'm sorry if this post is less than enthusiastic, but the last couple of weeks have not been all ice cream and fairy tales for me...

I keep thinking I just need to get through today... and next thing I know it's 2 weeks later.... Is April really almost over??

Cant sit up anymore...

2010-04-12T23:24:00.000-05:00

I am trying so very hard to be positive!!! Positive!! Right? Love my kids spend time with them, help them, usher them into what God wants for them and how to live and love and do the best they can with what they were given.

I just realized that I am having a very hard time "sitting up". Posture... I used to have a good posture. Now I can hold the position for about 30 seconds before I cave in... It is such an odd feeling, fatigue, trembling in my back muscles... Not even close to what I imagined for myself right now. But, it is a season. And like all other seasons, it will come to an end one way or another.

So my symptoms have been spiraling so fast and furious lately... ears are ringing so very loud. The ol noggin is ever increasingly hard to hold up.... I know the real feeling of a "melon head..."
Sometimes I just dream back to the days when we swam across channels to get to Carrott Island and the live sanddollars and crabs and so much relaxing-forget it all- fun. Just basking in the sun on the dock reading. Loved it. Walking on Front Street in the sunset... I revel in that which God gave me... And that is something Mitochondrial Disease and EDS and Seizures and whatever else cannot take form me.

What a mess I am in.

2010-04-11T14:32:00.000-05:00

I'm not sure where I am.
But I know where I've been.
Had time to think
about the heavy load,
my life, and my friends.
God knows who I am,
Who He called me to be.
One day I will walk in my destiny.
In time I won't look back,
how far I am fallin'.
For most of all God knows
What a mess I am in.

School is a mess...

2010-04-07T09:56:00.000-05:00

Ugh!!!! Frustrated!!! I can't seem to get ahead for my life!!! I don't even know why I took on this semester at school!!! That was a stupid idea!! We needed the money to live on since I was out of work, but I am falling so behind!! Grr!!!! Oh well. Better quit whining and see if I can force something worth reading out of my brain...

Pecans anyone?

2010-04-03T07:32:00.000-05:00

I found two small just germinating, still partly seeded pecan trees in our front garden yesterday. I say garden very loosely, as the dandelions and canna lilies and fire ants, plus one nasty looking fungus, had overtaken it and I had to remove so much yesterday! We had one type of bush (forgive me, names are a no-go this morning) that didn't survive the cold snaps at all... I pulled up 5 of them yesterday... Then there is another very odd tree growing in multiple places throughout... It stems straight up and the leaves are coming directly off the trunk, but they are still very small. I need to look them up and see if they are transplantable... I love trees, but not right next to the house...

Back to the pecans: I read this article about them this morning and in one sentence it said to bring them inside during the first cold snaps that they are alive and then to take them back out during the first summer and then in the very next sentence it said pecan trees dont do well transplanted... Well, what they hoo-hoo? Now what...

Can anyone translate for me when it says one or two inches of rain a week, how does that translate into "water hose watering in a pot"?? hahaha Well, I sincerely hope they don't die because I would love some pecans, and I would love some pretty shade trees, but I don't know the first thing about pecan trees!!! hahaha... It's gonna be a long first year for them... The article said their name is Native American for "nuts you have to crack with a rock"... hehehe. Me-ma had a couple of pecan trees. I hated stepping on them, but they were so good to gather and eat!!

The article also said they are "survivors"... Well, I guess we'll see...

No Easy Road.

2010-04-01T22:28:00.000-05:00

Life is never an easy road. Anyone who can say they have it easy is only fooling themselves and one day they will wake up and realize how much they missed out on...

I post tonight with a heavy heart, burdened and heavy-laden. It's hard to describe. Like God is just laying something on my heart and I don't know what it is. I don't know how to describe the feeling. It is emotional heaviness that I can feel deep in my chest.

I have so many reasons to have joy! God is providing for us everyday, and everyday He is showing His love and Grace and daddy like care for me and my family. I got the call yesterday that my disability application was approved! That is a miracle in itself. Anyone from the US will tell you getting disability here is like pulling teeth. Sometimes it can take years and lawyers and appeals, but God opened His hands in such a short time.

I keep waiting for this "slump" to get better. Usually when I do to much I have a time where I feel horrible and then after rest it gets somewhat better, or at least tolerable. This slump is not going away. Each morning I wake up is a struggle to lift my legs, to roll over and move out of bed, to pick up one leg after another to walk across the room... It is disheartening to need to move my leg with my hand/arm. That is a technique we teach children with spinal injuries or Spina Bifida. You grab the pants leg, or around the ankle and move the leg like it were just something in the way, put it where you want it...

It is 77 degrees in the house right now and I am cold. =( I am conflicted. I learned how to cope if it were EDS, I told myself, "this is how you will live and this is how you will teach your kids to live". And then I realized that I was doing it all wrong. I allowed God in, followed Him, but decided I had to do it on my own power... What was I thinking? My own power??

Mitochondrial disease is new territory for me. I mean, as a healthcare professional I can take care of many kids with it (and did), feeding issues, seizures, even one palliative, end of life care for a sweet 1 year old. It was against every fiber of my being to not feed that child, or want to hold him because his parents couldn't bear to do so. He was dying... Of course we always saw the worst of the worst where I have worked.

I am not scared of pain. I am not scared of not being able to walk. I am not scared of dying. Not to say I will not fight it with every fiber of my being, because believe you me, I will!!! I will walk until I collapse and can't move! But, if that should happen, I am not scared of it. I can state the medicine, the science knowledge. And I can state the God I know to heal and love. Bt I have a deep understanding that God's will is the perfect and right way, and that it does not always mean roses and sunshine. If my testimony is to fight this with everything I have to provide an environment where my children may learn how to thrive despite it, well, so be it. So why the burdened heart? Well, like usual I need to know what to expect. A deep rooted need to be prepared. The progression startles me just because of the knowledge that I carry, it seems fast, and like quick sand, the more I fight it the faster I sink.... So what now God? Do I keep fighting hard and sinking faster or do I slow it down and just wait for life to pass me by?

I had a seizure last night. I don't remember anything afterwards, so I guess sleep took over, but this morning everything hurt so much. My eyes hurt so much! Still... I am out of reserves for right now. Nothing in the bottom of the pot, Use it as you make it... And at the same time I know that God is the perfect ATP, the perfect manufacturer of energy. So what now God?

Symptom Diary...

2010-03-11T09:18:00.001-06:00

My primary care doctor instructed me to keep a diary of symptoms and medications and improvements vs getting worse... I started it, only to realize throughout the very first entry that I would be writing all day long... Symptoms to me are feelings in your body that come and go, the bolded italicized word there being GO... But what if they do not go so quickly? What is it then but a lifestyle that I must deal with day in and day out? If the weakness is there everyday, all day, worse after doing more, but still there? This morning, like every morning for the last 4 months I woke up in pain. I cannot remember a morning I didn't feel before I cracked open my eyelids... You know, during that time before you are really awake, when you are aware of your surroundings and the noise of the kids or the heater or the dog outside. During that time when normal people are getting their bearings straight and realizing the day ahead of them, I am praying out right. Starting off the day asking God for relief for the pain I feel already, that it not be an indicator of what my day will be. The physical act of getting out of bed is so very difficult. I used to be able to just pop right up out of bed, no big deal, right? Not anymore. It takes every bit of strength I have to get moving, so where is the reserve for the end of the day? The infamous "second wind"? So would I say the meds are working? Well, if I don't do anything, sure. But if I need to function during the day like any normal adult, then no. How do you learn to live with this? Adapt to move on with your life? How do you move on? How can you move on if each morning greets you with a taste of the rest of your day? Then you are confronted with the outward view of being "grumpy" so you feel forced to bottle it all inside, all your weakness, all your pain, the halos in front of your eyes, the trouble seeing, you can't make it known that you are struggling because then you are viewed as grumpy or not trying hard enough. It doesn't count that you use every bit of what reserve you have left to complete about half of what a normal adult would. That doesn't make a bit of difference. Or that there is a reason you are not working, that the doctors have advised you not to drive right now... Those things are forgotten and once again it is expected that you get back to it, or so to speak...

What do you do when sweeping leaves you breathless but leaving the pile to pick up later when you get your breath back looks like you are taking shortcuts and being lazy? Most people who have been where I am for many many years say "forget it! Leave it and who cares what they think!"

So, for the doctors sake and for the people who think I am just being lazy or grumpy, here is how I feel today:
I woke up and my arms could not push me up to sit up on the bed. I stood up and my legs felt like jello and the muscles cramped. All night and so far all morning various muscles have twitched and fluttered all on their own, with no control of my own. It's really quite annoying. It reminds me of a jello mold with a wave passing through it. I'm so very cold all the time. Pins and needles, tingling, the usual annoying parts... Headache...
Pain, well we wont even go there because it is so bad that focusing on it will take away from everything else I am feeling. It has already. People who are close to me focus on the pain and forget that it's not just about pain. Here's an example: if you made a fist and squeezed as hard as you could you would leave fingernail marks in your hands, maybe even break some skin. When I do the same right now I can barely get my fist to close all the way... Trying to swallow the many supplements and medications this morning was like shoving a pill down a dogs throat. I choked and sputtered and forced them down... Not having much of a gag reflex left, I choke on every other swallow. It feels like panicking and drowning every time it goes down the wrong pipe... Oh, and the memory.... Shall we say screwed up?? I receive frustration and deep sighs when I have to ask over and over what is going on during a day, or a schedule for the week, or can't remember even what I was doing that very moment... Thankfully I have excellent and patient instructors who have been very lenient in my late work being handed in. According to her I make up for it in quality. I can't remember what I was going to say next. It's hard not to bite back when criticism is what I am faced with. Especially when I have watched myself, as an outside spectator, fall far beyond where I ever dreamed I would be. It hurts. I certainly didn't do it on purpose. And facing the mountain I have to daily climb back up to get anywhere close to where I want to be is a shivering thought. I am worn to the nub, like a sand smoothed and rubbed by the surf, only it has not added to my beauty and desired qualities.
Some people say I am having a hard time dealing with it, others say I am giving in to it, not fighting hard enough, and yet others dont really care as long as I don't expose them to it. But what about what I say? Does that matter?

Bothered...

2010-03-05T12:35:00.000-06:00

I am so very bothered today by the results of the muscle biopsy and the medical community. My doctor sent me the results to put in the handy medical notebook she gave me. I am not a doctor or a scientist, but I know enough information about anatomy, physiology, microbiology and medicine to be able to read and grasp the concepts. So here is the result. And I quote "Rare denervated fibers". But what bothers me is that this is not taken seriously. It is disturbing that some changes in muscle are not considered important or "remarkable". It seems as if the medical community has become immune to the small changes and focus on the "remarkable". Suppose this change in muscle is the beginning of the disease process?? I am in tune enough with medicine and my own self to know when I am having changes, so if I sought treatment early in the beginning, and the disease process just has not reared it's ugly head all the way yet, how can this be considered "unconvincing evidence of myopathy"? Wouldn't any evidence of myopathy be considered evidence of myopathy, instead of large and obvious signs? Especially seeing as to how they did not have a specimen of my thigh muscle prior to me becoming sick. Supposing prior to last year my thigh muscle was perfectly healthy with all of the fibers being normal in size and now I have small changes. In many disease processes it has been proven that they start out with small changes like this and become detrimental. It disturbs me that small changes are not taken seriously. All it takes is one single abnormal cell to create cancer that ravages a body.

If only there were a way they could see it from my perspective for a few moments. If they could be in my shoes trying to climb the set of stairs today. Feeling the muscle in my thigh give out in the middle of me pushing off with it. It is a wildly abnormal feeling to have a muscle just give out and stop working in the middle of an activity especially one that involves moving me from one place to another and could result in falling.... Grrrr....

I love my doctors. They have done so much for me in this ordeal, but I am not satisfied with the outlook of the medical community altogether. And now that they have even small amounts of evidence I no longer have insurance because when I finally found doctors who would listen to my concerns, it is to late and I can't work to keep good insurance. This health care system sucks. What sucks even more is the thought that one day in the future my children may face the same road I am on... Grrr......

Time Out to Pray for a Friend

2010-03-03T22:13:00.000-06:00

I wanted to take a moment, and pray for a friend. Their family has been through so much. I have only known them for a short while, but I feel like God has brought us together for a reason. Right now she is fighting for her life, fighting so very hard and she is so very tired. I know God has a purpose for her, whether it is for in this life or in her legacy, she is an amazing girl who has fought. I am praying for God's perfect peace for her. Peace and rest and love. God's rest is the most perfect I have experienced it once, it is unlike anything I have ever experienced. It's you and God in that time, no one else, no distractions, no noise, no pain, no emptiness, no isolation or desperation. You and God. You and God. Perfect peace, He holds you like a father does his daughter when she is hurting, only His Hands take away your hurt. Even if it's just for that moment in His presence, it goes a long way. God I pray for Your perfect peace for her right now, meet her where she is, even if she can't tell everyone else what she is feeling right now, You know. You know how she hurts, where she hurts, where she is tortured and You alone can take away that pain and wrap your loving warmness around her. Hold her and give her perfect rest so that she may wake up WAKE UP renewed and refreshed and ready to fight to live. Wake up ready to fight to live. Live. Breathe, in and out, peace and love, rest and comfort, in God's arms right now, because tomorrow is a new day and you will wake up ready to breathe, ready to fight the good fight and ready to take back the life the enemy has stolen from you! God hold her so close that when she wakes up she can testify of your great love. She can tell her mom that you held her close and didn't let her go so her mom may be at peace too...

Really? No answers, just more questions...

2010-03-02T19:12:00.000-06:00

God I am about as fed up with this as I can be!!!! Why is it that You allow me to struggle through everything in life? Nothing has just come in black and white form. Never. I can't take this anymore. Please just get it over with!!!!!!!!! I don't care what the issue is, just tell them what it is and tell me how to live with it so I can move on with the rest of my life !!!!! Please!!!!!

Ok, so the muscle biopsy showed nothing conclusive... She said I have some abnormal muscle fibers but they didn't know why or what it is... Said it could still be mitochondrial disease, but the extra testing they need to do on the muscle tissue is very expensive and they cannot do it without insurance and that she wants to refer me to the mitochondrial specialists, but once again, it is very expensive and I have no insurance!!! I am going nuts here!! I don't know what to do. I just need a name for the face!!!! It's been a year since I have been asking for help and I am so very tired. Weary. The neurologist told me to go ahead and get the supplements that a person with mito disease would take and see if it helps, although she didn't think it would. I need a Dr. House......

So, WHAT NOW??? Once again all I have is questions and no answers...

Patience

2010-03-02T14:43:00.000-06:00

God, help me keep my patience... Day after tomorrow will be a month from my surgery and it was supposed to take "one to two weeks". I am trying so hard to be patient and not be the annoying patient, but I am losing my patience. I have told her time and again how this is affecting my family, how my career and much of my life has come to a screeching halt... I am jobless, insuranceless, and every day is a little harder than the one before. Help me be patient....

Owww!!!

2010-02-28T15:47:00.001-06:00

Paying dearly for redoing the kids room yesterday... Pain and complete exhaustion. I have slept half the day..... Now if only someone were with my kids I would sleep the rest of it...

Emotional tide running high... This is going to be a LONG post!!

2010-02-27T22:56:00.000-06:00

I remember living in the North Carolina and the tides coming in and out. Low tide, High tide... On the coast everything is counting on the tides behaving themselves... About every 12 hours the tides changed high to low to high again... The weather channel and local weather news were always announcing the times for the tide changes. The livelihood of the people depended on the tide changes to catch the right fish, dig up the right size clams, dock the boat, even find the rare bottles and treasures along the marshy beaches...

Sentiment...

These last two days have kept my emotions at high tide... There are ups and downs for reasons. Yesterday I handed my boss my resignation effective 2/26/10 and fought back waves of tears as I watched her read it... We both knew it was coming. Why was I such a wreck if I new it was coming? I thought it would be an easy process. Pack a few personal things off my desk, say good-byes that would really turn into, "I'll talk to you on Facebook...", hand in my badge, my pager, my keys. I can't believe I had keys. For a short time I had an office to myself! But, it took so much longer than I thought...

I know God walked me through this every step of the way. But, there was so much irony yesterday that I couldn't help but chuckle out loud a few times while removing my flair from Scottish Rite Hospital...

Irony #1: March 4th would have been my 5 year anniversary. Hahaha. Sadly ironic that once again I am gone before my 5 year, and I will miss out on my gift and picture with the CEO... What?? Don't judge! They give really nice gifts! Haha.

Irony #2: I called my neurologist on Wednesday to see if I could make an appt before my insurance ran out (runs out tomorrow...) and the receptionist says, "Well, she's back in the country, but she is out of the office for Thursday and Friday." Where's the irony you ask? While I was packing up my desk on the 3rd floor nursing unit, my neurologist was attending Carrol-Kruesen, the conference held by the neurologists at the hospital where I work. So I could not get in to see my doctor while I still had insurance because she was down two flights of stairs from me at a conference held by the physicians I worked with about the very same issues I am having.... That's right folks... Irony... I wanted to go find her and just see what she would say, but I figured that would not be ethical... I won't complain though, the doctors teaching the conference are the best in the nation, and they were presenting many great cases and ideas, so maybe she will come back with the lightbulb burning bright. Not that I will get to see her anytime soon because I am now officially unemployed with no insurance like half of the US.

Irony #3: I am too kind hearted to take all of my ideas and work with me, so I naturally left some things for the next nurse educator. That is what's right for the nursing unit, right? For someone else to build on my ideas, strengths and weaknesses and make it an excellent place for children and nurses alike... Irony? 5 years from now they will be using many of my ideas, creativity and extremely hard work with no credit to me, the very hard work that drove me to this place I am at now of utter exhaustion and weakness.... Ever heard the expression "run yourself into the ground"? Well, I have lived it over and over working at Scottish Rite Hospital.

The very nurses that I trained are taking my place. I was known as the Wound Vac Queen. You see, patients with wound healing trouble would have a vacuum system in place to drain away extra fluid and shift the blood flow toward the wound to speed healing. There was never a wound to big for me to handle, never a wound vac malfunction I couldn't fix. It became an art to me, carving the sponge to fit the wound perfectly, cleaning and draping, knowing the good tissue from the bad. I am not bragging, but it feels so great to have mastered something, and you know you have mastered something when you can improvise to fit any situation.

My favorite area to work in was the Postoperative Spine Unit!!! I loved taking care of the kids/teens after spine surgery. To see them in such pain and know that I am making a difference to ease their pain, worries and boost their self confidence! There is nothing worse to crush a young girls self esteem than a crooked spine, I was a part of giving that girl (or boy) their life back! They were champions at coping and I loved seeing them turn the corner to feeling better! I learned the value of a simple hair-wash, brushing teeth and having clean sheets! Scoliosis fascinates me. How God's perfect design of the spine has natural curves to perfectly balance our frame to walk, breathe, eat. One wrong turn in the genes and that spine can look like a slinky headed down a cliff instead of a gentle wave. It affects everything. Walking, eating, breathing, toileting, self esteem, neurological function. I will miss the spine unit the most!!

Dr. Olney always asks me how I am coping when I come see her. How are my emotions and stress? I tell her that I cope the best way I know how, and she doesn't need to worry. The loss of my hobby, my job, my satisfaction in those moments has won a silver medal for being the hardest to cope with. Why silver? Well, I don't want to talk about gold... haha. But I have learned coping mechanisms like I would teach every child I worked with. I have turned all my crying and negative hurt and defeat into a mission to improve my children's lives ten fold! I want to teach them how to cope, how to deal with physical and emotional pain, how to make the most out of learning, how to make the most out of money, how to live beautifully within their means.

I used to cope by baking! I would bake and bake and bake, sometimes I would eat it, but it wasn't about eating it. Most of it I took to work or gave away. It was about the effort to make something beautiful that was pleasing. I decided that coping mechanism probably isn't good for my tire rim waistline... Haha. So I focused on Nikki and Kimber's room! YAY!!!! Chelsea (sis-n-law) and I had painted the walls a sophisticated and fun and lively deep "pink" that took on hues of burgundy and gold flakes (added those in the paint). I never finished. Seizures, weakness, and she moved, and ran out of paint. It needs one more good coat and the trim by the ceiling done (I am a little on the shrimpy side to do that part...) So, in efforts to calm my emotional tsunami I focused on finishing the rest of the room.I found a beautiful black and white Damask bedding set at Target on clearance and bot 2 for their beds to match!! did away with the bulky bunk bed dresser drawers that were standing in as a dresser and bought someplastic drawer bins and put them in the closet for their clothes, Nikki got the pink tote and Kimber the green. My work friend said she used those all through college for her clothes and my girls loved them! hahaha. So easily amused! I got rolling under the bed organizers for their toys! =) Oh how I love organization! I rearranged stuff animals on the shelves that otherwise are useless because they are so close to the ceiling that my girls can't reach them... No good for books... What can I say, we're renting. I tried very hard once to take those pesky shelves down and quickly discovered they are mounted and attached to the doorframe... Thankfully my husband came to the rescue before they hit me o the head and ripped the door frame off the wall... So, if they must stay, might as well make good use out of them, right? I put up black and white curtains and they have a pink shaggy rug. It's amazing how much space we opened up! I really want to get them a desk and book case, but that is a bit of an investment that will have to wait, as there aren't any plastic tote versions of desks... Hahaha...
The girls loved it, we did it together with some mild pushing on my part when they were close to giving up hope... Even my poor sick little Amy was so excited to pitch in and help however she could! Oh I can't wait for the bed sets to come in so I can post pictures! It's going to be cute and sophisticated! The girls don't know about the blankets yet, so I can't wait to see their faces when they come home from school and see!!! =) My next goal to finish up the room is to 1. get the desk and book case.
2. frame the drumhead signed to the girls from Eric (my husband, their dad) so I can hang it on the wall as a keepsake. Who knows, Eric may be famous someday, regardless, he'll always be their drumming legend! hehehehe
3. Hahahaha Get the paint and finish the top edges of the walls.
4. get the girls a real small flatscreen with built in DVD player to mount on the wall (yeah right!!! hahahahaha I want that in my room! )

Ok, I know this was long, but I am excited and can't wait to actually be able to finish it so that my girls can have a bedroom they will remember when they grow old. One that will bring back warm thoughts and fun times of sleep overs and fairy tales and having dreams come true! Nikki always wanted a pink room! The wall color is similar to the pink on the blanket. Rich and warm. It was a bold move to get this color, I found it on clearance at Home Depot, a "screw-up" color! But, it was worth it! =) Ok, enough bore and rambling to you who are already nodding off while reading! hahaha...

I think I did to much today to their room, I am beat and hurting, but it was worth it!

So what do you think? Other than spending money we don't have on things they really did need (the other drawers were falling apart...) do you think that is acceptable coping mechanisms? hehe

Waiting...

2010-02-25T18:29:00.000-06:00

Waiting, as usual... Called the neuro today... My doc came back in town this week, was there the first of the week, but off today and tomorrow... Go figure...

I was starting to get a little worried about the disability... But then today I got in more papers to fill out, more about pain and daily functioning, and meds and seizures... Funny, I remember writing all of that in the application, but at least I know they are working on it. Patience is a virtue!

Wanna hear something cool and weird and not cool all at the same time??? Right now my right thumb is burning hot, the whole thing, but the other 4 fingers are ice cold... And on the left hand my ring finger is hot and the others are ice cold... I might pay to hear someone explain that one!!! =) go ahead, give it your best shot!

All that work paid off for school last week! 100 on a couple of assignments and a 95 on one. Excellent! And I found out that one class has no exams! YAY!!! =)

My incision is finally healing! The ends just did not want to close up. The top is closed and the bottom is almost. Ok, gotta end this entry... I just heard a kid of mine whisper, "Hey guys, I gotta idea..." That usually means trouble.......

Just a sign in to say I'm still here... Still waiting...

2010-02-22T22:40:00.000-06:00

Haha.. It was brought to my attention that I haven't posted results yet... Hahahaha. It's great to know that there are people in this world that know exactly what I am going through.... No results yet.. Of course when I was on the phone with my neuro office last week they did make mention that my doc would be "out of the country" and that I would get my results when she gets back. As much as I want to complain, she deserves a vacation or conference or whatever too, and I think it might be a bit much to aske her to schedule her life around my results! hahaha. But, sometime I wish it were that way... The medical field certainly is nothing near like an episode of House!

For a round of way to much TMI: I have had some stomach bug since Saturday. Thank you to my 3 year old son whom I nursed back to health for a couple of days while he had the same... I just pray it stays quarantined to him and me and doesn't see fit to prey on my other 3 or Eric!!! That would be VERY not cool!

School also got off to a jumping start. I am taking two classes online, but the first assignments were 10 page papers (before typing that is...) that involved legal issues in nursing and stuff that I know about, but do not enjoy one bit!!!! Thankfully I have a great instructor who is patient and enjoyed my hard work in a class full of one page lazies... Her words were that she enjoyed my paper and my "thoroughness" hahaha... Little does she know that my thoroughness came at a great price... Whatever it takes, right?

Want to hear something intriguing? Over 2 weeks I have been taking my temperature to see what it runs. Average? 96.5 Normal average? 98.6. The doc told me that I have temperature regulation issues... So here's good food for thought... If a normal person with an average temp of 98.6 runs a fever at 100.5 does that mean that I, with an average of 96.5 can be running a fever at 98.6? So this week when I first got sick and I was 100, would that be like the equivalent of 102? Interesting...

Want some more tidbits? I have heard a lot lately of EDSer's talking about Lidocaine and other numbing medications and them not being as effective, which is common knowledge in the EDS community, but not "scientifically proven" in the medical field... Grrrrr... Anyway, when I had the muscle biopsy done, the nurse gave me an injection of lidocaine on my hand to start the IV. It did nothing. I had no numbness, I felt everything. So is it really worth it to have a poke just to have another poke? Note to self.... Never do that again...
Thanks to everyone that follows me, it's nice to know that people are interested in what you have to say (and if you are not, well, I don't know the difference...) Hahahaha.

Have a blessed night, laugh a little and eat more Ginger snaps when you're puky. =)

Wow It's been a While...

2010-02-16T16:27:00.001-06:00

I haven't posted in a long time. At least it's a long time for me!! Hahaha.

I saw the rheumatologist today. She said my hip x-rays were normal. You know, I always wonder how much can radiologists actually be trusted... Things retroflexed odontoids and others are "mildly abnormal" to radiologists, and they don't include them in the reports. So maybe they have been so desensitized by the larger more serious problems they see on film that the smaller ones get forgotten. Like cursing. The first time a kid does it its embarrassing, different sounding, unfamiliar and foreign. But after a while they become accustomed to it. I know there is absolutely no way my hips were "normal" because the right one was so difficult to put in the "right" position for the x-ray. Anyway, whatever. I have the intention to get a copy of them myself to take to someone else when they get bad enough. Oh well.

My labs came back, no Rheumatoid Arthritis, but some labs indicated a fair amount of inflammation. Of course there's no way to pinpoint what it's from. She's just waiting for the results of the muscle biopsy like the rest of us... Speaking of which, I do wish it would hurry up...

Post Muscle Biopsy and should still be working on that School work...

2010-02-07T14:49:00.000-06:00

Hehehe... Oh well. I am slowly making progress on that school work I have due tomorrow morning at 8 am... My brain just doesn't want to process the hard stuff anymore. The sad thing is, its not hard, my brain just doesn't want to process anything right now... Could be the narcotics, of which I have only taken one today , but mixed with Keppra it really deals the brain some funny hands... I would love to have taken more doses because the pain is still out of this world, but I can't take the meds and take care of the kids too. It seems that on meds i am loopy, dont make much sense and extremely tired and groggy. That does not make a good combo for keeping Josh from blowing things up at 3 years old or to help his potty training either. Hahaha. I could hear the stories now... Why do you pee standing on your head Josh? (asks his wife 20 years from now)... Well, I'm not sure. I just remember my mom telling me that it would help.... (says Josh with a puzzled look on his face at 23 years old...) hahaha. Oh well. Maybe the affects on them wont be that extreme, but it is affecting my parenting none the less. I don't know how drug addicts care for their children. Oh, that's right, they don't...

Today the incision started bleeding again at the bottom. It was frank red blood, like a hematoma opened up and flooded the dressing. I changed the bandage out 3 times, saturated, before it slowed down. I guess that is a good enough reason to call the doctor tomorrow. Anyone else in this world believe it would be important to be able to reach a doctor on the weekend?? The incision does not appear to be open in any place. It is not red or draining green or grossness and I have not had any fever, so I don't think it is infected. The bruising all around it leads me to believe there was probably a hematoma (collection of blood) around the site where they took the muscle piece and that finally found its way out. I hope its done.

Another thing of concern is the pain in the back of my calf. It's the surgery leg, and there is an unusual pain in one pot on the back of my calf. It's a little warm, but no red or really hot spots. Most times nurses are taught to be suspicious of this sign as a potential blood clot in the calf. I am not on birth control (which would increase the risk of clotting) and the surgery was only and hour, plus I was up and about, not laying on my butt for days,so it seems unlikely that it would be a blood clot, however, it seemed unlikely that I had EDS, a mito disease and everything else I have been through too, so who knows. Some EDSers have a tendency to bleed and some to clot fast. So, I will mention it to them on Monday when I call, but am sure it will not be of great alarm to them. Maybe it is just because I have been walking different. We'll see.

If my incision starts bleeding again I am inclined to go to the ER just to make sure it's not a big problem like a bleed or deep infection. I hate to implicate anything, but infection the day of surgery (it started draining then and hasnt stopped) would not likely be a surface infection like those caused by home contaminants. Usually Deep infections come from nosocomial infections, meaning it is obtained while still in the hospital, and deep infections usually mean contamination during the surgery itself... So, I will not implicate or accuse anyone of anything, especially since it doesnt appear like an infection, but in fact it looks like frank bleeding. We'll see. I am rambling. Exhausted... Ok, back to school work... Need to finish it ASAP before I fall asleep..... =)

I really should be doing schoolwork instead....

2010-02-05T15:38:00.000-06:00

Haha. Don't you like that title?
That's right... I have 2 assignments due Monday by 8 am. Everyone who loves me knows that I am a horrible procrastinator, and then the pressure gets to me, I buckle down and "get'r dun"... I should have started on the assignments a week ago, but my books just came in a couple of days ago and my mind has certainly been on a million more important things... Like the potential and likely loss of the job I love causing a great catastrophe in our finances and the disappearance of my excellent insurance coverage.... But, at the same time, any professor can look up my blog and know that I could have spent this time devoted to the assignments... Ugh. No. My brain does not want to do the work right now. It's revolting, like a separate person picketing the very thought of reading a textbook about nursing management.... I'm not so sure it is safe to attempt an assignment at this moment anyway, since it seems that I am under the influence of a narcotic and an anti-convulsant, which doesn't seem to mix well. Have you ever seen an animal who is in the last stages of rabies? They wander around with a glassy look in their eyes and their tongues hanging from their mouths and do exactly opposite of what you would expect a rabid animal to do. Yeah. That's me right now. Wandering around the house. Can't remember if I just woke up or have even eaten. Not that I want to eat. Ugh. The very thought of food creates this churning sensation in my stomach that leads me to believe that the next step would be stumbling into the bathroom and hugging tightly to the white cold porcelain creator of swirlies...

This burning searing pain on my thigh isn't exactly a great motivator for the school work either... I have also since discovered that my core temperature today has been hovering around 95.9-96.1F leaving me cold and clammy, trembling and cuddled in my blanket given to me by my most excellent husband. This odd feeling is not like being "cold" that you would feel if you were out in the snow for to long, but a sense that body functions will shortly shut down if you do not get warm soon. Eskimo here I come... Unfortunately I am not cold blooded like the many critters that share this property with us, which means if my core temperature reaches 95.0 F I would be considered as having hypothermia and would require moderately quick internal and external warming via blankets and a warm lavage. Hmmm. Oh well. Fluffy blankets it is. How can a brain possibly concentrate on 2 assignments when it is that cold? hahaha. excuses are plentiful right now.

Ultimately I will procrastinate one more day and not complete either of the assignments today because I feel like dookie. Could you imagine using that in the 8th grade? "Why didn't you do your homework?" .... "Um, well, because I felt like dookie...." Oh, yeah, they still used paddles in those days... =)

So, if you are looking for a status update here you go: Muscle biopsy was yesterday, my leg is still draining a bit, it hurts like the dickens, I am exhausted, cold, nauseated, dizzy, spinning in circles, confused, drugged, weak and procrastinating all other necessary tasks because I can. haha.

Muscle Biopsy Thursday.

2010-02-02T08:49:00.000-06:00

Yup, its coming right up. I wish it would just hurry up and get here already so it can be done and over with. I have a friend coming over to take the girls to school and watch the other two while we are gone and then a friend coming over to help with the kids and dinner while I am sleeping off anesthesia and Eric is at practice that night.

Today has not started off that great. Kids screaming and fighting, my head is about to explode and I have to figure out how to get medicaid... I technically haven't lost my job yet. I am on unpaid "FMLA" and unless I am healed prior to the end of my FMLA (in 2 weeks) I will be unemployed. So I technically still have insurance, but am about to lose it with an 800 medication bill each month... So.... Well, enough thinking for now.... So.....

Did Doctors Know What They were In For?

2010-01-31T11:30:00.000-06:00

Sometimes I think that might go through God's mind every once in a while... "Do these doctor's know what they are getting into?" God designed this body to work together, and the environment around it meant to be support for it. Any change in any one part of this system is sure to affect the other parts.

I think when doctors do research and make "discoveries" that God looks at it like another complication. I can imagine Him saying "Oh boy, do they even realize what this means for them?"

It's amazing how in the medical field its all about the "science". Prove it they say. But when it comes to treatments and many diagnoses there are no "proven" scientific basis... It's pretty hypocritical sometimes. You hear stories of how patients are bounced from one doctor to another because they don't believe that their symptoms are real. They want proof. But yet, at the same time they will diagnose someone with Chronic Fatigue Syndrome. Where's the proof in that?

Anyway, it's more of a pet peeve of mine than anything. One of the physicians I work with said to me last June, "Prove you have EDS. Do you have stretchy skin? Do your joints come out of place all by themselves?" And now that I have the amino acid assay back from the dr. I just want to take it to him and say "I am missing Hydroxyproline. That amino acid is responsible for the structure of collagen. Without it collagen is weak. Is this enough proof for you that I have EDS, even though my skin is not super stretchy?" I really want to say, "it's a good thing you are not my doctor." Ok, maybe its more than a pet peeve. More like a deep seeded need to prove myself. Why does the medical world need DNA proof that a duck is a duck. If it walks like a duck, quacks like a duck, looks like a duck, well, maybe it's a duck... And of course to contradict my own self, there are those cases that look so much alike, and they are so very different. But, what is the problem with testing for everything to eliminate? Why do we have to do it one diagnosis at a time until the clock strikes midnight and we run out of time to test? Grrrr.

I am rambling. My brain is not being very nice to me today.

New low...

2010-01-29T13:27:00.000-06:00

I know I posted before about how the doctor and therapist want me using a walker with attachments for arm rests instead of the cane...

It was delivered today... It feels like a new low. It may take me a while to drag myself into using them. Maybe a few really bad days and I'll appreciate it, but right now I look at it like it's a steel alien invader... It's hard to maneuver anyway.... But it feels so much easier on my wrists and arms and hips than full weight on one cane on one side..... Grr.......

Another new low, an even lower low... A shower chair... They delivered a shower chair... I can't wait to see the look on Eric's face when he sees it! hahaha. Oh well. Maybe it will help. Thank you God for having the opportunity to have the equipment I need to get around.

But still, it still feels like a step backwards......

Audiogram...

2010-01-28T17:40:00.000-06:00

Well. I have never had a more strange experience. Ok, no I take that back. I have had stranger.

I expected the usual : Click the button when you hear the beep. And I followed the commands. It was hard to hear. My ears were ringing, and the "ear muffs" made this weird suction on my ears and there was a lot of pressure. I could hear the fluid running through the back of my neck. Anyone with a chiari knows about this... Its aggravating!!!

Anyway, I had trouble processing the test. It was like I was waiting and trying to hear the "beep" then there would be one and I would push the button, only the next beep would be lower and quieter and so on. But it was weird, it was like I would listen for the sound, finally distinguish it from the rest of the noise and then realize that I could hear it lower.

The tech was not very nice. She was snappy and impatient. When we were done I thought it went really well, but apparently my results were "unreliable" because I was "inconsistent". Well, great. Thanks. I wanted to tell her: you try it for one day: not be able to distinguish between the ringing you already have and the teeny tiny squeeking beep in the headphones, then when you realize what the beep is supposed to sound like, you realize you can hear it quieter, and that you probably missed some clicking of the button prior to it...

I don't know how to describe it, it was almost like my brain didn't know what it was looking for, until it heard it loud enough, and then after that it recognized it loud and quiet Once it knew the specific sound it was able to pick it out after that. It happened with every decibal sound she tried. She didn't even ask me if there was a problem, or give me a chance to tell her the experience, she just assumed I was "unreliable".....

Smae thing happened when he was doing the words. Say the words I say... She says them loud, I repeat them back to her and then as she says them to me quieter and quieter I can pick out parts of the word I regognize (like "dog" out of "hotdog") and then I can repeat it back because I already know what the word is. I recognized part of it. But if she tried a different word I wouldnt have been able to tell her what it was. It sounded muffled and blurred together... Grrrrr...

It is so frustrating to have a test work out that way and not be given the chance to verbalize what it was like. I know I will have a chance to explain that to the neurologist that ordered it, but I feel in the depths of my soul that I NEED to explain that to that tech so she will not think badly of me and my "inconsistent" answers......

Good Info!

2010-01-27T14:05:00.000-06:00

Pulmonary Function Tests were great! 130% lung capacity (haha). That's at rest, with no exertion, but I'll take it!

Muscle Biopsy in the near future.

2010-01-26T20:24:00.000-06:00

Two Appts today.

Rheumatology:
1. x-rays of both hips. The right one wouldn't sit the way the radiology tech wanted it too... I had to politely remind her that there was 28 years of joint grinding and subluxing keeping it form being where "she" needed it... The left one decided to make a big POP when she positioned it, so pretty sure it will be subluxed ever so slightly in the x-ray. Fine by me. Got a hilarious reaction form the tech, and just more evidence that EDS type 3 really is a problem. The rheumatologist was very nice. She did more labs to rule out more autoimmune issues, did the x-rays for baseline, or to assess damage. But, she tended to agree with the Neurologist and decided a muscle biopsy was her advice as well. We talked a little about some of the issues with muscles and joints, but never got into as much depth as the neurologist. Overall I think she may be good for me to follow the EDS. She was knowledgable, and she didnt discount type 3 as a "benign" or less problematic type, so we'll see.

2. Muscle Biopsy February 4th. That's my sons 3rd birthday. Of course, as expected, the EMG came back pretty much normal. The neurologist is still leaning heavily on Mitochondrial disease. It's been getting harder and harder to use certain muscles, central muscles, like back and neck and thighs and upper arms, abdominal. Sitting up has become a matter of propping. Ha. Walking is geting harder. Of course there are times when I am like "wow I feel ok, lets see what we can do..." Mistake. It never turns out well. Going upstairs (2 stairs in the office) is pretty hard. Being coordinated has gone completely out the window...

3. Audiogram (hearing test) on Thursday. Gotta get what you can while you still have good insurance, right?

4. PFT (pulmonary function tests) tomorrow morning.

She harped on me a little more about using a cane instead of the walker... Still waiting for the walker. Have you ever reached those levels where if you stoop down one more level, you will just give in to it altogether? At least right now I am accomplished, well, in my uncoordinated ways, with the cane. I feel as if I give in to the walker, that will be like slipping down the rope a little farther, and I will get used to it, and then the cane will be obsolete... Disturbing thought I know. And whats the next step after a platform cane?? A wheelchair... Really?? Maybe not, but that is how it feels.

I'm going to pop my head in at Scottish Rite tomorrow to print out my W2 and get a few things. Wonder what kind of rumors that will spawn...

Eric is worried. Of all of my goals in our life, I wanted to create an environment of peace for him. Well, I am pretty sure that I accomplished the opposite...

And of course the looming question that I keep putting out of my head: I'll write it here and maybe forget it: What if the bopsy is inconclusive? Whats next?

OOOOh!!!! Great NEWS!!!! Nikki got straight A's this semester!!! Good girl!!! And she aced the TAKS test in reading and Math!!! I am so proud!! Got her Diary of a Wimpy Kid Cartoon edition for her hard work. She oloves that story. To feel like she is not the only weird kid! haha.

One more day, One more post.

2010-01-25T21:27:00.000-06:00

I didnt have the appt today that I was supposed to have. See, they gave me a reminder paper last week with my appt date as today at 1pm, only wthey actually made the appt for tomorrow at 1. No problem really, I can come tomorrow. I was just building my self up for it, and now it didnt happen. Move on I say though, right. Tomorow I will see a rheumatologist, who will have a whole new list of things to "investigate" and then the neurologist, who is going to say that the EMG was pretty much normal. I know that because I did have my appt with my Primary Care Doc.

I am just hoping it wont be a case of "dog chasing the tail" and it all be from the same problems found last year. Because if it is, and it waited until I have no job and no insurance to fix it, well, I am pretty sure the Docs in NY aren't going to take Texas Medicaid... Ha.

Oh well. I am grateful to have people who care and God who gets me.

The brain is rambling in my own head, so I'm pretty sure I may not have made much sense and its bedtime now... Update tomorrow when I do or don't know more...

5 hour application.....

2010-01-22T23:38:00.000-06:00

Wow. The government takes their applications seriously!!! haha. I just finished the application for disability. That is scary. It took me 5 hours to do the application and "worksheet". Taking the GRE was easier than that!!! whew. But, it is done. I have to sign a couple of things and send in my W2 when they come in, and they will have to gather "medical proof" that I am srewed up, and then make a decision. It's like waiting for someone to hand you the keys or the cuffs.... Hoping and praying for another miracle here. =)

A nurse that can't be a nurse...

2010-01-22T13:22:00.001-06:00

That's me. If you know of any agency in Dallas that's looking for a nurse that can do a secretarial job on the best day, let me know..... Maybe I could do research???

So what NOW????

2010-01-21T20:05:00.000-06:00

In three weeks my FMLA ends... They had the official meeting today. HR, me, my two directors... To say that as of today I am finished with my eductor position that they have been allowing me to do because I can't meet the "physical demands" of the job, which required that I also be able to work with patients... They will "protect my position" until the end of these three weeks and "revisit" with me to see if there are any other options.

Pretty much, unless God decides to heal me in the next 3 weeks, I am done working on the 3rd floor nursing unit at Texas Scottish Rite Hospital For Children as nurse educator and floor nurse...

Maybe God will allow the IS positon to open up, so I may could begin a 5 day a week job, in which I will destroy myself trying to go to school and do that at the same time. So, yeah, No options. Government disability? Well, sure, but if I even qualify, while waiting 6 months for it, we will lose the car, the house, the everything... So, ince again the pressure is squeezing the life out of me and I am going to do what I do best and give in to the pressure.

I often wonder what Job was thinking. They tell you that he remained faithful to God and never cursed Him, but what did he think? Did he get worn out and just plain tired of it?

God, when I said something's gotta give, I didn't mean for the world to give way out from underneath with no options...

But, I will be grateful and count my blessings. I am still walking. I am still talking, I can still see and hear. I will pray for those in Haiti, because right now they are far worse off than I am.

Thank you God.

So frustrating...

2010-01-19T14:17:00.000-06:00

You never wish for bad results! That would be like cursing yourself. But, at least with bad results you have an answer. Can't I just have an answer?

The EMG was not totally abnormal, but it had what she said were a couple of times where it could have been "slightly" abnormal. WHich, if you knwo the medical feild, unless it is wildly abnormal, the docs dont care... Anyway, she is going to go back and see it again and I will follow up with her Monday to go over everything together...

If you have never had an EMG, let me forwarn you now: Ever stick you fingger in a light socket? ugh.
Of course the muscle part of the test didn't exactly feel like cake and ice cream... Yes, it was a small needle, but it was still a needle, and it went into my muscle and I would contract the muscle. So when it came time to do the right leg it was in the calf muscle, I moved my foot and the calf decided enough was enough and cramped up... I had bad flash backs of pregnancy... Then came the thigh muscle, and it did it too..... Ugh. Owww.. Well, I guess that means they are working... Now if I could just get them to voluntarily work instead of just spontaneous... Anyway, that left my right leg sooooo sore now!! Its been 24 hours and it hurts like I ran 10 miles...

The amino acids were interesting. Every amino acid was normal except Hydroxyproline. It was absent. How do you have an amino acid that is produced by the body be totally absent? Interestingly enough: that particular amino acid is responsible for the structure of collagen. Without it, the collagen breaks down.... Hmmmmmm

Hmmmmmm
Hmmmmmmmmmmm.....

No? Really? Hmmmmmm...
What causes EDS?? Oh, thats right. Defective collagen.........

It didn't really answer any questions, and she is still thinking it could be mitochondrial disease. Said we will talk about a muscle biopsy at my appt on Monday.
She wants me to have PFT's (pulmonary function tests) done to evaluate my breathing. I told her it is exertional. PFT won't really pick up much with exertional problems, but I will do it because every basis will be covered!

So here is my serious, but somewhat humorous question for the day:
So if Hydroxyproline is absent and there is no structure to my collagen, is that the reason I sag like a 90 year old?? hehehehe.

God, something has to give!!!! I need rest... I'm tired and tired of trying to be superwoman...

Am I stupid or just a gluton for punishment???

2010-01-17T21:11:00.000-06:00

I carried Kimber from the living room to her bed. She was asleep on the chair, exhausted, in pain and not feeling good. So, instead of waking her up I did what every parent loves to do. How can you be a parent and not love to carry your precious baby to bed? They are so peaceful and quiet and they grab tight because they know you are there for them.

I am sad that this has caused me great difficulty right now. Breathing and hurting... How can it be that I can't carry my baby to bed? Everyone who knows her knows she is no more than 35 pounds soaking wet! Hahaha. She's so small and I just want to make her pain go away. It's not fair.

But, my need to breathe and muscles and head are telling me that next time I will need to wake her up and walk her in that direction... Anyone who know Kimber also knows she sort of sleep walks too..... hahaha.

I'll miss it, maybe again one day, just hope she's not to big by then!

Did to much today.

2010-01-16T19:10:00.000-06:00

I never feel it when I am doing it. Well, thats not true, but it is so much easier to ignore the signs when I have things that NEED to get done!!!

But right now God is telling me that it was to much. My body is in revolt. The doc mentioned stroke-like episodes. So, does a heavy right arm and leg which are so hard to move and drooling out that side of my mouth count? Heavy head, heavy chest, hard breathing... Yeah, I'm pretty sure these are telling me that everything I did today was not even worth it. Especially since it all has to be done again and again and again and again....... Oh God. I need you. I need your help!!

Another day... and now I know I did to much...
=...p

PT today

2010-01-14T20:17:00.000-06:00

I met up again with my physical therapist from a few months ago. When the seizures started I stopped going, so I hadn't seen her in a while. Her reaction was exactly what I thought it would be...

You see, when a physician sees you and examines you they do the basics, what it takes to tell them what is wrong with you. But when a physical therapist examines you they put their heart into it. They want to know how you move, how you breathe when you move, how you should be moving, and they are more willing to share with you their thoughts on your progress, or lack thereof.

She watched me walk into the therapy gym with the dark purple cane I bought from Walgreens... (which is not the 4 prong cane or the wheeled walker I was supposed to have...) But, it's ok that I didn't waste my money on those things, because they were bad options anyway... She tested my muscle strength. Her furrowed brows, though not really an encouragement, were signs that she was working on helping me, and that was a comfort. We talked about leg braces, ultimately deciding they would be to heavy and use more energy as well as risk my hip on the right... And her final decision was something that I am remotely familiar with from work... With just walking I used a lot of energy to propel the weak legs forward, but used very little upper body strength, only fingertips to balance on walls, or lightly on the furniture. A regular walker put to much pressure through the wrists, which are trouble areas. So, she broke out the walker with arm rests... ugh.. its bulky, but the brunt of the weight in moving was on my forearms and shoulders and spread more evenly out, and I was able to move so much easier...
For now a cane will have to do. Insurance and finding the walker and fitting (apparently I'm short...) takes a while, plus it is different than the original doctors orders, so a new order is needed....

The distance I am able to make without being so hungry for air are getting shorter and shorter...

We talked about ways to conserve energy: showering in the kids shower where I can sit and use a hand held. no blowdrying the hair, and if I must then sitting on my bed while blowdrying. Sitting for tasks that allow it. Not doing so much at once.

She said she wanted to talk to my doctor before we even start any kind of therapy.
And of course, she like everyone else scolded me for driving...

This whole driving thing is working me over!! I have this inherent NEED to drive. It's like the epitomy of independence... But, I have noticed changes there too... It's harder to hold my foot up to not have a "lead foot" on the gas peddle, and it is harder and requires more work to apply the brake. And steering the small car is way more tiring than the van...

Anyway, that's enough rattling on for one night...

Avoid stress she says...

2010-01-11T20:57:00.000-06:00

I have tried so hard to not be stressed these past few days to see if it would make a remote difference, and have come to the desolate realization that I need an outlet. I used to be a nurse. Taking care of patients was my outlet. Sound odd? How can focusing on someone else who is more stressed than you and helping to relieve their anxiety be a sufficient outlet? You'd be surprised how taking extra special care of someone else's child in pain can dramatically deaden the screaming voice of your own...
Here's what I used to say to the sweet anxious hurting kids that only knew the here and the now....

First you have to get their attention.

Soft spoken: "Can you hear my voice?" A surprised, but still anxious squeak "Yes."
"Look at my eyes..."
(keeping in mind that I made the sweetest eyes twinkle because helping the hurting was my gift, I was good at it. and I don't say that lightly out of pride. it was my God given talent and to waste it all on myself would be selfish. eyes...work past my own pain and twinkle inspite...) Ok, back to the child...

Next: "Focus on the sound of my voice and close your eyes..." No don't squeeze them tight, close them lightly.... "Breathe in.... Breathe out... Breathe with me.... In through your nose..... Out through your mouth.... Slow it down a bit... Gooood....." (eye contact with the parents) Keep doing it...

"Do you like cake?" (what kid doesn't)

"I want you to imagine the biggest cake you have ever seen... Just keep breathing with me... Now, picture all the candles that would fit on that cake... I want you to take a deep breath in..... And blow out ALL those candles! Keep blowing until they are all out... Now think of your pain as those candles and I want you to blow it all away...."

And sometimes we would do this for several minutes until the anxiety was a whisper in the wind and all that was left was sweet precious baby eyes looking at me, wet and glistening with tears. "it hurts.. " they say. "I know" I say (meaning it in all sense of honesty and whole hearted true understanding). "Has the medicine started working yet?" I'd say... And after a big deep cleansing breath, "yes, it's better." was usually the answer. An answer that in some real and deep way took away my own pain.

Believe it or not, as crazy as it sounds, it actually works. Well, for postoperative kids anyway. You see, there's a funny thing about anxiety. It heightens your awareness. Adrenaline pumping, and you become aware of everything. Sounds of parent fighting because you've just had major surgery, sounds of monitors beeping because you are breathing like a mouse on speed... smells of puke because you are so sick from the anesthesia... Well, even left over smells of anesthesia.... Where are you? What day is it? What time is it? Where's my phone (teenagers... hehe) Where's my kitty? That's what Amy would say if it were my own sweet one. Every time your mom touches you it becomes an irritant rather than the beautiful comfort...

And the pain... Oh God, the pain... It screams louder than the surrounding sirens in agony... Anxiety is a monster. Cruel and Selfish, it RIPS away at your peace and comforts... If you confront it, all the rest seems bearable.

It even worked on the frightened, anxious parents. I have peeked out of the corner of my eye and caught them following me, calming, lowering pitches in their voices, breathing easier. Yes, God is with us, Our baby is ok, and we can breathe easier...

Everything is going to be ok. God whispers in the quiet room...."rest now, everything is going to be ok..."

New Neuro

2010-01-08T07:40:00.000-06:00

For us most doctor visits cause a sense of dread instead of happiness. It means we have to try and explain, maybe show "tricks", and get the physician to not only believe how we are feeling, but to truly understand it because it is unlike anything they have ever seen.

I was scared to death to meet a new neurologist. But things changed when she introduced herself. She started out by saying "I read and researched your whole chart that your doctor gave me." How many doctors read and research anymore?

Anyway, it was a great appt. She listened, didn't try and explain things away before I could tell her and actually assessed things the way it should be done.

She scolded me for driving... well, gotta do what ya gotta do... She scolded me for not using the walker (or even going to get it... hehe) And said that I need to at least use a cane. She wants me to restart PT, but with a different goal in mind: energy conservation and gait training. She also wants the therapist to do a full assessment of my muscles and see just how weak they are. She said I have significant weakness on the right and that I drag my right foot.
So, essentially her thoughts are that there is something more going on than we originally thought. She said there are several different things that fit the symptoms, but not many that fit "all" of the symptoms.

The first direction she wants to investigate is a Mitochondrial Disease. She drew enough labwork that I thought I deserved a cookie and some juice afterwards. If the mitochondria of the cells are defective there will be excesses of certain biproducts like lactic acid and pyruvate and that will show up in the blood work. The last step would be a muscle biopsy.

She scheduled me for an EMG for the 19th and then a follow up appt to talk about blood work and EMG on the 25th.

Mito is not something I was expecting. Usually it is seen in children, diagnosed at young ages when they are failure to thrive and weak. But, some of the things I have read says that if the mitochondria DNA mutates you may not show signs of it until enough cells have been affected by the mutation that symptoms occur.

We didn't discuss details of if the results are positive, because there are so many different kinds and the treatment, if there is one, depends on the type. She simply said depending on the type treatment would be replacing what is missing like amino acids. She did make a point to say that with Mito energy perservation is most important so you don't go into an "energy crisis". It all goes back to anatomy and physiology. The mitochondria are the "power houses" of every single cell in your body. They take the products of the food you take in and convert it into the "energy" ATP that your body uses to perform just about every single function. They also do a lot of other things, but that is the biggy. So, depending on the defect will depend on what symptoms you have, Almost all are progressive, it's a matter of can it be treated adn how quickly does it progress and what is being affected. It can be genetic, most occuring as a sex linked trait, meaning it passes from mother to children.

I have decided that beyond the basic research and what I already know about Mito that I am not going to focus my attention on it right now. Not until the test results come back. I a not afraid of it. My God is bigger, after all, He did create them! But, I am an obsessor. I will obsess until something is fixed or there is nothing else I can learn about it.

So, I will keep moving forward just like I was until the results come back. I will walk with a cane. Yes Mema, I will walk with a cane... And I will try and not push my body over the limits like I usually do because if it is Mito, that could result in trouble breathing.

By the clinical definition I am not depressed, but I must confess that I am a little sad that we cannot do the things that we love to do so much because I cannot do them... We will prevail, God has shown me time and again that He is there for me and this time is no different.
=)

Oh, maybe I can get one of those canes that's a sword inside!! hehehehe.
God I need to have some fun!!!!

Scared to death of tomorrow!

2010-01-05T23:33:00.001-06:00

Yup. That's all I can think to say. Meeting new neuro tomorrow. Scared to death.

"I am learning to believe that I don't have to prove a thing, because You're the One who's saving me..."

Avoiding the New Year

2010-01-03T09:46:00.000-06:00

I'm sure every person with a blog decided "I'll make a New Year's blog!" Some probably had resolutions, some probably whined about the worst of 2009 or even highlighted the best of 2009.

Me? Well, I decided to avoid the blog for the first day of the New Year. Well, for several reasons...

1. Life has been tough this year. I don't want to highlight one of the worst years of my life, I would like to simply move forward away from it.
2. These last few weeks have been infinitely worse than the months before it. And as positive as I try to be, I don't feel very positive right now and I didn't want to infect anyone reading with that attitude.
3. I have discovered over the past few weeks that when people ask you "How are you?" Generally they don't mean "How--are--you?" Usually it is a polite way to say "I am acknowledging you are around." Lying is a sin, but if it spares the other party from being forced to listen to a 30 minute description of how I "REALLY" am does that make it ok?

ANd Finally: 4. I am just plain having a hard time going up and down the two stairs to the office computer...
The doctor gave me a prescription for a walker. Do you think I've gone to get it yet? That feels like defeat.

This year has started out with so many more questions than answers that I didn't really feel like emphasizing that on New Years Day.

Walking hurts so much now. Not just hurting, but weak. Every step feels like it takes Charger size horsepower to complete, and then when it is done it ends in hips popping and moving around and knees buckling.

But I do it anyway. I clean house and take care of kids and go places with Eric and then to the office. Eventually it catches up to me. The other day I slept from 1pm to 5pm and then had trouble walking until bedtime. I don't nap. I hate naps. They feel like giving in and being lazy. That day not only did I nap but I was devoid of strength to do anything before or after the nap...

What is strength? Is it the ability to move muscle groups to make a 200 pound frame move six inches forward? Or is it the inner "Grrrrrrr" we get, determination to accomplish everything despite our limitations? God is our ultimate source of strength, so how do we harness it and use it to the best of everything He's given us? WIthout wasting it on useless triffles. Anger is a useless triffle. It requires so much energy and gives back absolutely nothing. I am not angry at the whole picture. I am just praying for relief, sweet relief for just a little while.

I am learning that it is not just about pain. Pain I can deal with. It is so much more than that. Weakness and swelling and I just can't think anymore. How am I supposed to be a nurse getting a Master's Degree if I can't even remember my kids birthdates or what days I am supposed to work or how to work... Ok I'm done for now.

So, my doc did solve one thing for me. She talked to an eye doc for me about the whole 3-D problem in the last post I made. Apparently that is from optic nerve compression. Really? How much more evidence do they need?

Gipped on the 3-D...

2009-12-27T10:51:00.000-06:00

So here's a new one! Might be kind of funny actually. Eric and I went to se Avatar in 3-D in Christmas Day. Lo-and-Behold... I can't see the 3-D...

Usually.... when I go to the movies (regular ones) with Eric the screen is just a little fuzzy.

So... With the 3-D glasses on the screen was crystal clear... Where's the 3-D? No leaping off the screen, just a beautiful picture and a major headache 30 minutes into the movie. It was a beautiful movie with graphics and color though.

Anyone else had this?

My husband didn't understand that I couldn't see the 3-D part. He put on the glasses and said they work just fine.

Anyway, just another curiousity...

I cleaned all of the kitchen yesterday. Here lately I have been taking it in blocks, doing small bits so I don't get tuckered out and dead by the end (not literally...) But yesterday I pushed through the pain, pushed through the freakishly fuzzy head, kept scrubbing when my arms were burning and I thought they were going to fall off... I thought "if I just get it done..." But today, I really understand the spoon theory myself. I feel like crap. Like in the cartoons when the anvil falls on their head. And today, still the kitchen needs to be cleaned. Again. Never ending cycle of guilt, responsibility, pain and utter inability to be who I need to be. Its disappointing.

I am disappointed in myself that I can't get it done, and done right.

Ugh.

Big Decisions

2009-12-21T11:08:00.001-06:00

I don't know how to make these decisions. How do you just make a decision that could potentially affect the whole family and the rest of your life? My brain is in no shape to be making these decisions. I am not ok God, this is not ok, and I don't know what to do with it. I feel like the kid with the baby bunny in their hands and they don't know what to do with it. If they try and play with it, it may get squished, if they aren't careful enough they may lose it, or it may bite them, so they just wander around with it in their outstretched hands, just looking at it, puzzled. I cant afford to screw this up right now Please God, I am begging you.

So now we wait. Hurry up and wait... Again...

2009-12-20T22:09:00.000-06:00

Blood drawn to test for Myasthenia Gravis. 12 day wait for those results. Appt with new neuro January 6th.

So once again I will hurry up and wait.

Swallow Study

2009-12-15T21:18:00.001-06:00

I had a swallow study today. Barium is some seriously nasty stuff!!!

Anyway, I aspirated once on thin liquids (went down the wrong pipe), the very first swallow, then it "penetrated" twice (goes into the wrong pipe, but not down it) and did better with controlled techniques like the chin tuck. Did fine with nectar, pudding got a bit thick and went down after multiple swallows, the peanut butter graham cracker went down very slowly, got a bit stuck, but after the trachea, so no worries of aspiration there. (no this is not me, forgot to pick up my films...)The pill got stuck, but also after the trachea, and had to have water to make it move down. So, as far as the airway goes I have to modify it a little, be very careful, small bites with chin tucks and a very controlled swallowing, and then a referral to a GI doc for the rest of it not going down issue. Said it may be because of muscle weakness from autoimmune stuff, if that is what's going on. My mouth and throat still feel "tired" from all the choking and coughing the first swallow.

The speech therapist that helped said it was good that I didn't have a "silent aspiration" in other words I still have a cough reflex and can get it up quickly. She said normally they would teach muscle exercises to help, but with it looking like autoimmune the exercises might make it worse. Suggested I do speech therapy after they figure it all out to help, and then suggested the same to get my speech and cognitive functioning back up to par.

So, we'll see what the docs say.

Really wishing I had that walker today, even though the very idea of it makes me cringe...