Something's Gotta Give!

Everyday God gives me a little ration of patience and a little "just get through one more...". Everyday He brings me a little closer to what He wants for me as far as healing and the rest of my life. I just wish I could see farther than the day to day.

Has anyone seen the movie with Jack Nicholson "Something's Gotta Give"? It's one of those movies where so many things happen and each time you as the viewer go "seriously? What else can happen? Really, "something's gotta give!!"

That's how I feel today!! God, Something's Gotta Give!!

I was looking at some pictures posted by some fellow EDSer's on the FB group and discovered that there are more things that I can "do" that I didn't realize were abnormal! Really? There's more?? Somethings Gotta Give! Oh, wait, our problem is things give a little to much!!! HAHAHAHA! Love the Irony??

I saw a screening tool today that I like. It said kids around 12 should be screened for Ehlers-Danlos and then it listed all the possible complications that come from it as reasoning for why. Here's a few: Aortic aneurysms, POTS, Chiari and Tethered Cord, pain, dislocations......... So, why is it not taken more seriously?

Doctors who are less than familiar say "you're just a little stretchier". Dr's who are familiar enough say "you're not as bad as you could be". Dr's who are very familiar just suggest you find a good pain management doc...

What happened to medicine being about preventing problems and catching them early? If EDS makes kids more at risk for tethered spinal cord, shouldn't they all be tested for a tethered spinal cord, regardless? It would be like saying eye cancer causes blindness but not testing their vision. I have lots of these What if questions. Unfortunately no one can answer them. And those who can make the research happen tend to not take seriously the experiences EDSer's have.

When will "You're just a little looser" translate into "Lets make a list of what we need to check into and what your future may hold." I think every EDSer should have a "Red Flag" list.

Just my two cents. Because Something's Gotta Give!!!

Shouldn't every EDSer have a head/neck MRI to check for retroflexed odontoid and damage caused thereby? And shouldn't every MRI of such said person be "red flagged" for the radiologist to see the retroflexed odontoid and "mild chiari" that reeks havoc on our lives. Shouldn't we, as parents of such and medical health professionals, be able to advocate for this?

I want to do so much research! I have so many ideas!! Arg!!
Something's Gotta Give!

But I Couldn't resist!!

I so knew I would regret chasing Chelsea down the street yesterday!!!!! Oh yeah! Whipped cream fight, and I said forget it! I ran a very short, but very fast 40 yards and now I am regrettttttinnnnngg!!!!! Oops. Hips clicking and popping and ankles feel like they are burning. Oh, and we won't even go into the spine and neck and head......

Hahaha. Oh well. It was Thanksgiving! Everyone deserves to chase their sis-n-law down the street with some whipped cream on Thanksgiving!

Happy Thanksgiving!

I figure if I make a list of what I have to be thankful for then the things that I really want to despise will be a little less apparent!

1. I have been married to the man I love for 10 years, and on Feb 29th 1996 he told me he loved me.
2. All of my children are alive and blessed. They all love God.
3. We are renting a house with a backyard that the above mentioned little people can play in! haha
4. Texas Scottish Rite Hospital For Children is willing to work with me in the middle of my medical mess and let me work some!
5. God brought to me wonderful doctors who are doing their best to get me functional again.
6. I will be able to teach my kids how to live with this and not suffer through it.
7. I am alive.
8. I have a good strong heart.
9. I can still walk! =)
10. I can make some mean chocolate covered peanut butter balls.


11. I grew up near the Ocean. =)
12. God has BIG plans for my family.
13. 14 years and 60 pounds heavier, Eric still loves me.
14. When my brain is functioning, God gives it great ideas. The kind that make changes.
15. We have a new couch and chair and rug (Thanks Timothy and Claire), well semi-new, but still thankful.
16. There are people in our lives that listen to God, recognize our needs and love/help us even when we don't ask.
17. God is changing me, shaping me, and will never leave nor forsake me.
18. We go to an amazing church where God dwells and shows up just in time.
19. Nikki got saved last year.
20. Nikki is going to be a strong person despite her weak joints.
21. We have two vehicles (even if I can't drive one right now, I WILL drive again!!!)
22. My son is alive, growing, smart, and God fulfilled His promise and answered our prayers to make it so!
23...... Ok, I'm getting tired.............

I have so much to be thankful for.

Even the negatives will be a blessing one day.

48 hour EEG and other scenarios...

Yesterday I finished the 48 hour EEG. They came to my house and put it on/took it off and I carried a "fanny pack" with 25 wires attached. Today has been a bit difficult.

I thought if I scrubbed down the kitchen it would distract me from the pain. Who knew it would make it hurt worse. Tonight is just about unbearable. God never allows us more than we can handle, so I guess this is not as bad as it could be. There is so much shooting pain that I can't even begin to pinpoint where it begins, where it ends, or how. to fix it. The fuzzy confused brain isn't really helping.

I am trying to take care of the kids, but they are all over the place and I can't keep up with them... I'm dizzy and I can't keep focus and my head and eyes hurt so much. my legs and arms are weak. Where are the doctors now when I am feeling at my worst to see what it gets like. ARG!!! Anyway, I know doctors are not saving me. God will forever save me, and in His own time he will figure out what I need to do and how this is going to work.

I am nervous about this whole work thing. I have until the end of December to figure out what to do, and if I can't go back to patient care by then I am wondering if I will be looking for a new job... I don't know Still waiting on God for that one...

Some days I just try and ignore the symptoms, pretend they are not there. Say I'm fine, and hope maybe they will go away. Usually those days are bad days.

I don't know how to make people understand what this is like. I feel this driven need to make them understand what this is like so I won't be judged. Why do I feel judged?


What now God?

Hormonal!!

Why is the pain sooooo much worse this time of the month???

ooh..

The first two days back at work were pretty rough. Not rough as in bad day at work. No, had great productive days, but taxing on me and I hurt so much. And I don't understand why. It was just office work. I know I still have some petit mal. God has a plan, and I am just waiting on Him to see. We'll try again next week and see how it goes.

Back to work here I come!

Well, at least partially anyway. Do you know I had to use a calender to recount what has happened over the last few weeks... Definitly out of touch... Anyway, I have my official from work. The CNO, Occupational Health Nurse and my DON decided that patient care is not safe for either me or the patient. That is totally understandable and respectable. It would be very irresponsible of me to try to take care of someone's child with the way my brain is working.

However, they are willing to let me come back to the office position, just for the original hours that I usually work it, 12-16 hours a week, so that I can get some income, as well as not get so far behind in the education. I had sooooooo many inservices planned and in the working, and I bet those teaching them are like "Ugh, where's she go?" hahahaha Oh Well. As Victor used to always say "Se La Vie". So, Wednesday I will start back again, get the wheels rolling and see the smoke come billowing out from between my ears and see just how well my brain will work back in the real world. Right now it's barely surviving taking 4 kids to church, so we'll see how the hustle and bustle of work makes mends...

I'm excited in one way in that God has allowed me to start contributing again, but nervous in another that I have to be able to think again. It's amazing. I was always the "bookworm", straight A's, instant recall. Now I can't even remember a conversation with my husband half the time. So, yeah, it's a little scary to see how I will be able to handle it...


Will I be able to Think? That is the question.