Thursday, April 29, 2010


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.


  1. Firstly good luck with the appointment (s). Secondly its always worth remembering its those clever clever people's job to work out what is going on.

    Take a typed synopsis of all medical 'stuff'. Geneticists look at the bigger picture and may ask what seem unrelated questions - just go with the flow. I think the nurse in you wants to be all professional don't forget that its ok to be just the patient!

    The lack of money situation makes my chest feel heavy and reach for the brown paper back to breathe in and out of. So the stress of this alone is enough to make anyone gasp for air. Bendy fingers are quadruple crossed for you.

    Is anyone treating you for dysautonomia (sp) or POTS as its known as here.

    Weeding for FIVE hours good grief.

    Living on a knife's edge is not good for one's health at the best of times. Stress manifests itself in a myriad of ways in the human body.

    I don't really do the religion thing as you know but I am a natural born optimist. I think lying in that incubator for three months as a tiny baby meant I got time to learn how to fight. Reading between the lines I know you are a whole lot stronger than you think. If this is faith building then so be it. You have undrawn on resources yet to find, of that I am sure. Making meals out of nothing for one's kids and pretending that everything is going to be fine for them makes for a mad mad day. I can remember when my spouse was made redundant years ago making nettle soup (crying whilst doing it) do you know what that was one of the best soups I have ever made.

    So grasping at straws here I will suggest homemade soup. Its good for you its very cheap especially split pea soup. Its nutrionally sound and filling.

    My spouse thinks I have finally lost the plot. As he doesn't realise the various candles lit are dedicated to virtual friends. I lit one a little while ago, for sherry over at wordssaladdemyenliation of me and the loss of a child. She has MS and sadly lost her daughter a year ago. So I read her latest post and lit a candle for her and beside hers is yours now. Flickering away together. As I just said to her, in the doing of that miles and oceans away there is a flickering light making me mindlful to will in a virtual way that things will be ok. You will get through this.

    But Trish, exhausting yourself weeding for 'that' amount of hours is bonkers. I hope you remembered to drink enough so that you weren't exhausted and dehydrated!

    Back to that comment I wrote a little while back about leaving yourself a little energy to treat yourself a little every day. When money is tight one can re-cycle a cammomile teabag by popping it in a bowl and having a foot bath. So there you go your rescuer was there all the time!

    A massive gentle virtual has just flown across the skies and should be landing right about now.


  2. Split pea soup is a commodity here! My husband makes it out of these yellow split peas with some shallots and very small pieces of ham! Mmmmm... For some reason I can't seem to get my kids to even taste it... I think it has something to do with the look of puppy puke.... hahaha. Oh well.

    The weeding was essentially me venting. It was a particularly mean day, with particularly emotional components and I needed an outlet... Unfortunately I was feeling good. (It was unfortunate because that is the only time I do stupid stuff like that....)

    I am being treated with metoprolol for dysautonomia, and it works to a degree. I've had a lot of kidney and liver pain lately. Not something I am enjoying at all, but the appt is Tuesday, so I am trying to be patient...