I keep hearing that I need to not let my illness idenitfy me. How do I do that when it (TN) controls 80% of my life. I can no longer ski cuz of the wind, I can no longer ride my bike, I can no longer live outside my house cuz of the pain and when there is no pain I am afraid that I will get the pain. I can't promise that I will be somewhere at any given time I am layed out on the floor in pain. By the way the word pain does not do it justice. It feels like the hand of God is smaking me down. I feel so trapped and out of control. I can't live a normal productive life. How is that not letting TN identify me? How can I rise above it?
Hi, Brogan.
I know how you feel (as I sit here at 11:30 a.m. trying to muster the umph to get going) We just have to keep telling ourselves that we will find something that works for us. I truly believe we can get some of our life back even though we have to live with this horrible disease. We just have to keep chipping away at the percentages. There are good days ahead. Don't give up. Keep reading and learning and researching. I wish I could offer more encouragement and I am sorry to "hear" how sad you are.
Mary
I'm still trying to figure that out for myself. It's hard, but I know it can be done.
Well, all I can tell you is it is always in the back of my mind. I try to ignore it. When my intense pain came back in may of this year I was devastated, it presented in tears every day for two weeks. My doctor switched my anti depressant to Effexor. Which miraculously worked for my pain.. I now still take it since August and have recently started back on Topamax for migraines. I think it's stressful knowing the pain can come back or get worse or whatever..and that's what causes my migraine's...(The stress of knowing this!) I've always been a high-strung kinda person so this disorder doesn't help matters at all. If I was not taking Effexor, or some kind of anti-depressant, I don't think I would be coping very well.
Peace, Min
Brogan,
I hope you are feeling better now and finding ways to cope. Unfortunately all of us know we will always have this problem lurking behind us. Please read through some of the posts here and try some of the alternatives others have used to lessen the pain. MaggieO has found relief through UCC and so have others. I have found that a low saturated fat diet helps me. I also kept a pain dairy for a while to help understand all the triggers. I noticed that Min has found a medication that works. My doctor has put me on Cymbalta. So far, I have not tolerated it well, but some of these meds require an adjustment period. I am also looking into Jon Kabat-Zinn's approach to meditation. I can't say that I have been successful since I keep falling asleep during his guiding mediations--very relaxing. :-)
Mary
Hey Brogan, I know exactly what you're saying. It's impossible when the pain is raging to not let it define you. You would have to be superhuman!
I wanted to let you know that I live in Kirkland. You're not too far away there in Snohomish. Would love to talk sometime. Hang it there! ~ Vicki
Brogan,
I am so very sorry that this illness is causing you such pain. I wish there was some magical way to rise above the ordeal, but there isn't. We all find ways to cope and move forward. I don't know much about you or your condition but it sounds like you are/were pretty active. The hardest thing for me to deal with is the not being able to do what I loved to do. My dear grandmother, who endured more in her life than any five people should, once told me that the Lord doesn't give you more than you can handle. I do not know what your faith is, but faith and hope are what I rely on every day. And I do not necessarily mean religeous faith. My family is also a huge part of my faith. If you notice in my avitar picture there is a precious little guy I am holding. His name is Ledger. He is the son of a very good friend of ours. I cannot describe what happened or how it happened, but this little guy saved me. Then one day I decided that I would rather spend every day of my life in pain with my family, than one day pain free without them. Every day is a battle and I HATE to lose.
We all deal with this illness differently and find what helps us cope best. There is a tremendous amount of knowledge here at LWTN and even better people. Use them for what you need.
Remember that faith and hope are good things, maybe the best of things.
Gary
uh oh… ur flaring up again pretty bad aren’t you ?? I haven’t seen jon in a while and think about you often. I am back in crisis mode myself, and my neurologist went out on sabbatical. Awesome. I’m sorry girlfriend, I TOTALLLLLLLLLY get it, I think we all do :’(
Thank you guys for all your support. I read them daily. This week was a hard one and I ended up in the ER. I have the most supportive husband and he is so caring but even he has his limits. I feel so bad having to call him at work and tell him that I need to go to the ER. It tears him apart. It tears me apart. My girls are now at the age where they understand what is happening and they feel that tension too. My youngest keeps asking me why I have to be in pain. She tells me that every night she prays God will take away my pain. It breaks my heart.
I have found peace in my faith and in all your support and shared experiences. Somehow just knowing that I am not in this fight alone it brings comfort. Thank you.
Thank you for all your insight. As most of you have said, some days are better than others. I had a great week then woke up at 4am to a major TN attack topped off with a migraine. I thought I would die from the pain. Like all of you, if you have not felt a TN attack you just don't understand how someone who looks perfectly healthy could be in so much pain. If there is a more horrible pain then I couldn't imagine it. It is so much more than "that face thing mommy has".
There is comfort in knowing that I am not alone and there is also sorrow in knowing there are others affected by this horrible disease.
b