Dr. Suess

"And will you succeed? Yes indeed! Yes indeed! Ninety Eight and Three Quarters guarenteed!"

Thursday, March 17, 2005

Frustration of being chronically ill

Pearls and Dreams

Pk is frustrated. While, I should be content with all I can do in physical
therapy (thank you very much Cellcept!! I can do TONS more now than when I was
in physical therapy years ago and on Imuran & IVIG) I get frustrated when
it's a 3 steps forward 2 steps back scenerio. First, PT didn't do what I wanted
it to do. It did what my surgeon's intentions were ... to increase the
strenth of certain muscles to better recover from surgery. MY GOAL was to get
myself out of surgery (hey! He said I had a 2% chance of recovering enough to not
need the surgery!) so, that was frustration #1.
Frustration #2 is ... I'm one of those freaky people who really really likes
working out. I have missed it terribly since becoming sick. Thanks to
Cellcept, with this round of PT I have been actually WORKING OUT ...however, it is,
a 3 steps forward 2 steps back type deal. Yesterday, I did GREAT! I
aggrivated my PT to no end. I lost count (doing 3 sets of 20 instead of 3 sets of 10
etc), I did more weight on 3 machines than I was supposed to, I really
...worked out. It felt good. I was keyed up and thouroughly enjoying myself (except
for the balance exercises ... I hate those, those are PT not working out!) .
I had to go back in today for a last PT before seeing the ortho tomorrow. I
walked in there, tired, yes, but still, for some stupid reason, thinking that
I'd be able to pick up where I left off ... nope, I took twice as long to
do exactly only what I was supposed to do ... no extra weights, no extra
repatitions, and I was unable to complete my last exercise.
What upsets me, is that 3 years ago, I couldn't have done ANY OF
THIS!!!!! So what am I pouting about? I'd go into PT for my knee and have to have
passive exercise, the PT would have to do all the work, while I laid there
watching people work out and wishing I was one of them. What is wrong with me
that I can't be grateful for the days like yesterday, that bring me back to 20
years ago. After all, I WAS still up and exercising, I might not have been doing all I want to do, but I was still doing significantly more than I once could do.

So, Pk is pouting.
Don was told Tuesday that his scoliosiscurve has worsened. Significantly. The
chest xray shows a whole inch movement in a year and a half. plus more
twisting. We've already been told that progression means eventual rupture of
internal organs & or suffocation. Instead of him reaching out for help, or calling the pastor, or talking about it ..he's reacting in anger ...he's not said a civil word to anyone since seeing the doctor and he's sleeping an in ordinate
amount of time, even for him. I probably should be more understanding and
compassionate with him ...however, he's worn that part out of me. He was told
to take PT to slow the progression of the scoliosis, he was told to do things
he hasn't done. He was told to get into counseling to deal with what all this
means and hasn't done it. He's throwing a tempertantrum because life sucks.
Yea, well, life does suck. I pray, I pout, I blog, I dig a hole and I go to my
internet buddy's and whine about it, I vent, I talk about it, I talk to my
therapist, I tell somebody, I do things besides take it out on those around me. I
understand the psychological reasons behind his behavior ... it just doesn't
make it any easier to be on the recieving end of it.

So, in my own frustration, I'm probably not being the best wife I can be. I have emailed my pastor and said "HELP! I'm not being very nice. " (I haven't said anything mean, I just haven't said anything)

Oh well, no PT tomorrow, maybe early to bed tonight and some rest, extra Mestinon (MG symptom medication) and maybe I'll feel more rested and better tomorrow. I see the ortho tomorrow and get to argue with him about my surgery date. He thinks it's going to be soon, I'm going to be telling him it's not going to be till school is out. He's um, not gonna like it. He wasn't happy about me saying I didn't want it in January, now I want to wait till June. Hey, thanks to Cellcept, I do have a life!


  1. I am so sorry, Pk.

    I pray that while you embrace hope, you can remember what it is to feel hopeless.


  2. What an interesting perspective! Thank you!

    I really hadn't looked at it from that perspective of now I have hope. My mother used to call my 'polyanna'. I tend to always be looking forward, and when I'm smacked with reality, it doesn't feel good.

    But, when you put it like that, it does put a different twist on it. While I'm upset with myself, I should be looking at what it felt like to be hopeless, and I was.
    They'd done everything that could be done.

    I don't like feeling ungrateful, I guess that's why I was so upset with myself. Maybe it wasn't ungratefulness, but discouragement, and ... I really have come too far to be discouraged. I understand the science behind MG far too much to have been caught off guard by what happened today. I had no reasonable expectation to walk into PT today and repeat yesterday, so only my own foolishness put me in that position.

    Thank you so much for your encouragement! I appreciate you!!!

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