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Old 05-07-2008, 02:12 PM   #1
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Glimmer of hope

I was seen at a new pain clinic yesterday. I was exhausted from testing that included the MMPI and was told that it was not indicated that I see the Pain Medicine Psychologist as was previously thought. I guess I answered the questions in a positive light as to the effect of my illness on my mental health.

I was seen by the Director of the Program, a pain medicine physician who went over my case in detail and agreed that I am not a candidate for PT or massage or any other new conventional treatments. He also was concerned that I have had adverse reactions to 3 of the 5 pain medicine classifications. He did offer to try me on Morphine but as I expressed that I am reluctant to try as I am afraid that exposure at this point may make me less a candidate should I ever have to have a pain medicine for a surgical intervention or terminal illness, I would not want to take a chance that I may not be adequately medicated in that event (I know that at some point I will be facing a valve replacement surgery in the future.) He agreed that my hesitation was a sound judgement based on my history.

He also mentioned looking into an implantable neurostimulator and if I decided to go that route, he would help with getting that set up with a qualified physician. I understand from my reading they can be either a medication dosing pump or a nerve blocking type, both of which carry many risks and are only rated for a 50% pain reduction in those that are successful.

I had a list of dozens of medication trials that have failed and we also discussed the nature of that problem as it relates directly to my care plan. I was prepared for the "not much we can do for you spiel" and I got it as I expected. He seemed genuinely concerned and stated that he could not believe that I had not already been approved for disability some years ago. He offered to write a letter on my behalf to the judge assigned to my ALJ hearing set for next month. I left with no return slated unless I decide on one of the two alternatives I have mentioned.

I was glad to have the opportunity to voice my preference to suffer in silence rather than to be medicated to the point that I could not appreciate the world around me.

Even though it was a stressful ordeal and as expected, no medical alternative for my pain problem was achieved; I at least feel that my condition was once again validated and that as I have been fighting for recognition of my disability; it was given. I at least have that to be thankful for. Even though I had gone to another facility reluctantly, I am glad that I heard it once more. Now I will look no further, but accept what has happened to me with calm reserve and try to just make the best of it. I will continue to read and try to stay up on any new developments but I will not seek out another to only hear the same.

The searching for an answer is almost as stressful as the pain and limitations one has had to endure. I will accept a good day with open arms and try to just keep a positive outlook during the bad ones. At least now I can rest easy knowing I have given it my best shot.

Thanks for listening and sharing all your info and suggestions.

 
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Old 05-08-2008, 06:56 AM   #2
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Re: Glimmer of hope

hi goldy,
there is much peace in letting life simply be what it is. welcome. i hope the letter helps you get your disability dollars.
i quite agree with you. seaching is stressful. it is why i quit doing it. answers are not there yet. one day they will be. till then we can dance thru life and pain knowing we are strong within, where we need it most.
peace,
bluelakelady

 
Old 05-08-2008, 10:04 AM   #3
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Re: Glimmer of hope

It still sounds like it was a very positive experience, even though there was nothing he could do. Having somebody listen and acknowledge that your pain is real is always such a help. Even if there's nothing they can do about it.

 
Old 05-10-2008, 09:04 AM   #4
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Re: Glimmer of hope

Thanks Bluelakelady and Grapedy for your comments. There are so many of us in the same boat of no plausable treatment available for one reason or another. It is calming to just accept the facts as they are and try to make the best of what faculties we have. I want to be able to make a difference somehow. I am searching out ways to do just that, whether it be writing (something I have been told I am good at) or just being some service to another on days that allow. I want to be able to say at the end of they day, I am important and able to do something, even if it may be something quite small. Just because we are limited physically does not mean we cannot expand our minds and our circle of friends and family. I wish there was an answer and I pray that someday others may have a better prognosis than those of us today. Thanks again for cheering me on and for allowing me to have my say. It is liberating and now I am ready to take on whatever challenge I can manage.

 
Old 05-11-2008, 12:11 PM   #5
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Re: Glimmer of hope

goldyfm, I am glad you had the opportunity to explore the options offered by pain management. It seems like you had a successful day. I agree with what you have said about not using strong pain meds now because they will be less likely to give you relief in the future if and when needed, something I have discussed with a few docs. My husband also turned down the pump implant that would send morphine directly into his spine to help alleviate his chronic back pain. It was the only thing that would have helped and allowed him to go back to work. He chose early retirement instead. There are people with pain pumps (I think Jerry Lewis has one) but again I consider it a last resort.

Glad you have had the opportunity to chose and can finally leave the stress of searching behind you.

Glojer

 
Old 05-11-2008, 01:23 PM   #6
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Re: Glimmer of hope

Thanks Glojer for your supporting comments. It is so reassuring to have positive feedback on your decisions. I know that even though I face pain daily, I can think and manage most of my own affairs and occasionally get out and drive myself to an appointment or grocery store on good days. I would feel totally incapacitated if not allowed an occasional escape from home, even if it is out of necessity.

I would like to function as independently as possible. I guess that is a throwback to my upbringing of learning to be self-sufficient at an early age. Even though I want to live alone, I would feel more at ease than being a burden on another. I would rather do without than be an imposition. I know that being able to lie down in the middle of the day or requiring quiet is not an option when you live with another as I have done in the past. I want to be able to function independently and do whatever it is that my body allows on my own terms, not those of another. I am so looking forward to those days again. I am hopeful that is not too long off in my future.

Thanks again for your kind words.

 
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