Cannot stand the Pain part 2, and a thank you.

Thank you all who gave me such caring advice, I wish we could all meet somehow, what good it would do to have a face to face support group, I am so thankful that someone told me about this site a couple of months ago. You all have great suggestions, I have tried Enebrel and Humeria and had seriously bad reactions to both, I was told that it was highly unusual and that the biologics may not be for me, add to that a fight with my insurance company and no response yet from Abbot about their patient assistance I am in a hard place financially and that affects what I am able to do. I have been through 2 Rhumetologists and ended up at Chapel Hill with a wonderful man who is a teaching dr and who is very proactive, problem is I live 3 houirs from him and it's hard to see him when I get into this place of agony. I did call his office this morning as I belive the psorisis has invaded my insides. this i very emarassing to talk about but I finally told my husband this morning I am so uncomfortable. I also called because I have had approx 8 hours of sleep in the last 4 days, and as soon as I fall asleep I wake up in pain and shaking. The damage to my foot and toes has happened so qickly, I have always had pain with this, but it has been pretty well controlled with the meds I am on, but now I am at a totally new place and I don't wnat to just mask the pain, but I really cannot function right now and I am scared. I know that there are people even on this site that are way worse off then I am, I feel that I have been proactive in my care, but I am also sick of calling doctors, calling insurance and being rejected, my entire life is about this disease. I am also the mother of two beautiful grown daughters and a new grandaughter 9 months old, I want to spend more time with her, I don't want to her to think of me as the "sick" grandma, I don't wnat this to be my life. I think I have fear because my mother committed suicide and some of it was pain related, we are different people, but I now understand some of what she was feeling. I would not want to do that to my family ever as she left me parentless, but I have learned to never judge why someone makes the decisions they make until you have walked in their shoes. Thank you all for being here and being kind enough to reply to me, you are my mental and physical health lifeline right now.

Robin

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Robin,

I'm so sorry, I hope you can find some ways to stay upbeat and do some nice things for yourself. Keep up the good fight! God doesn't give us any more than we can bare however I bet it comes close with psoriasis...

{}{}Psoriasis joke alert{}{}

If their was a magic bullet to cure psoriasis, i would shoot myself in the face. :o)

Hope you feel better.

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SCRobin, hang in there and keep posting let us know how you are doing. Please know that we are all in this together - I am sending gentle ((((hugs)))) your way. Deanna

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Just hang in there is all we can tell you. I was in your same exact position 2 years ago (when i was a senior in high school). I can tell you it was very tough. I left it untreated for about 6 years until it finally caught up to me when i started feeling pain in almost all of my joints. I was in agonizing pain for and couldnt do anything for a whole month but lay in my bed. And yes you are right about psoriasis taking over your body emotionally but you just have to keep fighting it. What got me through the pain was a video game( Modern warfare 2 =D) Your pain reliever could be your grand daughter. Just hang in there something will come up =)

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You have friends, Robin! Please know that psoriasis is strongly associated with depression and suicide risk (this is in my field of research), so run, don't walk, to a psychiatrist for an evaluation! Severe pain, coupled with physical deformity, is a terrible burden to carry on your own.

I'm so glad you are at Chapel Hill, NC, this is one of the premier medical research facilities in the USA! You shouldn't have to run over there all the time if they have a good history on you, they should be able to give you a treatment plan that meets your needs with local resources.

I believe everyone on these boards have had the same issues with insurance companies, pain and depression, so please find a local support group that you can talk with. Your state chapter of NAMI is the place to start, PLEASE call them and initiate your support process now! The link is below. My prayers are with you, there is much to live for and trust me, you will eventually find some relief. Breakthroughs in this field are being made every day. Message to me anytime.

Hugs, Chuck & Ginny in Aurora, IL

http://www.namisc.org/

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