i have been meaning to write back to you; i know i owe you a response and i have NOT forgotten.

gosh, i just relate so much to how you are feeling. please don't forget how many of us here have been and are in the same boat as you. and we really do care what you are going through right now.

i know your ALJ hearing will bring favorable results as far as your SSDI case goes. you just hang on tight. that thing of being nothing but denied, denied, denied for what seems like forever is something many of us go through. but once your case is heard in front of an administrative law judge at that hearing, and provided your docs have cooperated by filling out the residual functioning capacity questionnaires properly for you - well, things being what they are, bev, you can hardly be denied your benefits any longer. i will hold a good thought for you. stay on top of your lawyer and that congressman as the date approaches. it won't be long now... and medicare is right around the corner from that SSDI approval. everything will be overturned. finally!

to me, depression is one of the hardest aspects to living with severe chronic pain. it's very hard on you, and it's extremely hard on family and friends as well... those around us who do love and care for us find it difficult to cope with the severe depression (i am just speaking from my own experience, bev). i think this is why a face-to-face support group might be so helpful. a good way to find one is by calling a local teaching hospital which has a pain clinic attached to it. you and your husband both could clearly use good support within the community in which you live.

and of course this on-line community is always here for you. my heart goes out to you, bev. i know if you are like me you may have had high hopes that the TOS surgery was going to provide you with some answers, some relief at last from years and years of unexplained and very severe body pain. but now we know it just doesn't work like that. and it is a really hard surgery all by itself, to get over. but you will recover from that operation, i promise you that much. and hopefully, the TOS surgery did what it was supposed to do and created more space in the thoracic outlet for the nerves and vascular structures to pass through.

aqua therapy is something i'm looking into right now... has to be done in a warm pool. if you're like me, regular PT is a bit much to handle right now (not to mention, a good therapist soooo hard to find for us-). fern has been very helpful in telling me about something called ai chi, which is done in the water. your local Y may have some aqua programs... also the national MS foundation has some very good 'being active' classes which are free or very affordable. while they are designed for people with MS, they cannot exclude ANYONE - so may be worth a call to your local chapter, bev. use your community resources; this may also be a good way to find a pain support group.

the only pill i've ever found to help with my severe chronic depression is something called Namenda, which targets the excessive amounts of NMDA receptors the pain brain produces. it's not an A/D per se... actually the drug was originally developed for use in alzheimers patients. but it's being rx'd to treat both nerve pain and depression, as an off-label use, by neurologists and PM docs. i have had remarkable success with it and can't say enough about it.

beverley, i know the hopelessness you speak of. sometimes i feel like i can't go on. can't find a purpose for this awful chronic pain which has devastated my life for the past 30 years or so. it's driven every single person away that i ever loved. has absolutely ruined the quality of my life, dashed my hopes and dreams, caused so much suffering and misery... and FOR WHAT? i cannot get the meaning of it on some days, when i'm just in a deep dark hole and unable to climb out. it is such a slippery slope. and i've been all alone for most of it.

but i'm still here. i have to remember, my pain is not me. it's just a part of me, something i have. not my core. and i can go on and maybe, just maybe sometimes i can help other people who are suffering just like i am. maybe it's not too late for them, or maybe i can comfort them if i happen to be in a slightly better place on that particular day. i don't know, beverley. but we are in this, together. that much i do know. you are NOT alone. maybe no one can take your pain away, but the suffering is the piece that we can work on. together.

please ask your husband to help you find a support group. do that one thing. and maybe you can talk to one of your docs about looking at the A/D med picture - perhaps a change there might be in order, i do not pretend to know. but i believe with time that all things are possible. i know you will get the SSDI coming to you and that that will help the financial picture and help to make you both feel much more secure about the future.

please know that we care. we have each of us been right where you are.

alison
"Be Brave"