Wednesday, August 17, 2011

Frustration with CIDP

I feel like CIDP is kicking my rear end this week.  I'm hoping it's only because I have tried to do too much lately.  Maybe once I get some rest it will be better.  It's a catch 22 though.  I need rest to feel better, yet I can't rest because of the symptoms I'm having.  It's very frustrating, and when this happens I usually end up having to fight depression.  My emotions become haywire.  You should be praying for my family.  Bless them!

I don't think I'll ever learn to accept my limitations.  I think it's because I think if I do I'll waste away.  So many days I just feel like laying in bed or sitting on the couch.  I rarely actually feel up to getting out of the house, and usually have to literally make myself go to church and bible study.  Most days when I have plans to try and get out of the house, I sit in the shower and cry.  I just pray the Lord will make it possible for me to be able to.  I get very restless when I have to stay home for any length of time.  There have been times when I've not gotten out for 3 weeks.  It's awful!  Before getting sick I stayed on the go constantly.  In a blink of an eye that all changed.  Now I need to plan ahead.  If I want to go to church on Sunday, I need to be careful Friday and Saturday.  I haven't learned this yet.  I just don't want to miss out on life.  I've already missed so much.  My cousin got married this weekend.  I was bound and determined I was going to make it to all of the events.  I'm paying for it now.  I almost didn't make it to church on Sunday, and it's mostly likely playing a big part of how I'm feeling this week.

I have a fear of becoming so weak I won't be able to walk safely, or even at all.  I have to purposely use my muscles to keep them from atrophying.  So I push myself; usually too hard.  Some days, though, the weakness wins.

My pain has been excessive the past few days.  It feels like I have electrical shocks shooting through my legs and arms and it's burning the inside.  At the same time it feels like I am being jabbed with needles.  My muscles ache, and I'm have muscle cramps often.  They just hit all of a sudden.  They feel like charlies horses (wonder why someone used that name), and I'm having them in weird places... like my rib cage area.  The muscles in my left eye are becoming weak, so my eyeball at times doesn't track correctly.  It makes me dizzy and starts triggering migraines.  So far I've been able to keep the one I'm fighting right now at bay.  At the same time my face becomes numb and cold.  It's the strangest thing.

All of that makes me irritable.  It makes me angry.  I seriously hate CIDP.  When I have these "episodes" I get depressed.  I often wonder if my doctors will ever figure out a treatment plan that will put the disease in remission, or if the disease will ever just go into remission.   My frustration is at an all time high today.  

I haven't exhausted all the treatments for this disease, well with the exception of the immune suppressant medication.  I'm currently taking a high dose of Cellcept.  The theory is because CIDP is an autoimmune disease, if they can lower my immune system enough it will cause my body to stop attacking itself.  Although it hasn't solved the problem, we do think it's helping.  Without it, we think I could be so much worse.

Cellcept is risky.  When Dr. Gaw gave me the option he told me several times, "You do realize this medication can kill you.  It can cause diseases most people don't get."  We weighed the benefits against the risk for some time.  I finally just asked him if he was in my shoes, what would he do.  He said he would take it.  So I've been taking it for a little over a year now.  So far I've not had any issues.  I have to have blood work done often to monitor blood counts.  Because CIDP lowers my immune system and the Cellcept lowers it even more, I have to be careful to not be around anyone who is sick.  It's also frustrating I can't make people understand that.  Some people are careful to stay away when they are sick and will keep there children away from me, but some just don't get it.  I had someone hug me at church on Sunday who had a cold.  I didn't even realize it until she had already done it.  I've managed to not have any communicable diseases in quite some time, and I'd like to keep it that way.  Sometimes I'd like to wear a sign that says, "Stay away if you are sick."

So, that's where I am today with CIDP.  I feel miserable today, but I am hopeful it will get better.  If I could just figure out a way to rest, I think that would help.  As weird as it sounds, sometimes heat helps the pain.  It can be 90 degrees outside and I'll be wrapped up in a heated throw.  Sadly, I've burnt out two because I used them so much and currently don't have one.

I know there is something the Lord is trying to teach me in all of this.  Wonder what I'm missing...


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