Message Boards
Replies to 'Living with Chronic Pain'
|
January 5, 2006, 12:54 pm PST
 Quote From: pandas Hi Prof, there is no cure for it except for a really drastic one. There is no thearapy that can help this pain. I actually did reach out to 2 of my friends, but they have no idea how to react to me in a wheelchair. That hurt. Basically my family is all I have, and my family has their own life. The reason they looked in the right direction is because I have been begging for a MRI I knew there was something wrong. I also have fibromialga and that is from a fall I had when I was 14 (fell 9.5 feet in gymnastics) I knew from an early age that I will get fibromialga. Over the years I was always on crutches for about a week or two. For me that was normal. So when this happened I knew it was different. I also knew that it was going to be perm. That was the feeling that I had and no one believed me of how I felt,except for my family doctor. She has been the best to me. I would call her because I needed a shoulder to cry on. It didn't matter what I needed she was there and she still is. When I told her that something is really wrong, she believed. My doctor did all the phoning for specialists, wanting updates etc. That is mainly the only reason that I am telling my story so that other people in the same or different problem can come together. Sometimes all we need is to know someoone is listening
pandas dear pantas,
i'm not sure what the drastic cure is -- is it that deep brain procedure? there is a large university where i live that has been a pioneer in that area with good results. don't give up hope. i am thinking about being a lab rat for a new drug therapy in rsd/crps [thalidomide, believe it or not]. the thing is, though, with these procedures and studies, they kinda suspend the "do no harm" directive!
that they wouldn't do an mri angers me. there are so many things that don't show well on plain film, or on bone scans, or on ct scans. grrrr. i have avascular necrosis in every major joint plus the spine, and some smaller joints. it's best treated early but is only seen early with an mri! to get one, you have to get rather pissy. which i can get...
don't give up on your friends! did they actually say they were uncomfortable -- i know that is a lunatic question but what the heck! i forced my friends -- admittedly just the very best ones -- to deal with me by calling them and asking for help. this was a 2-edged sword. i actually needed the help and was loathe to ask for help. all those cabinets that i couldn't reach, all those nasty collisions with my refrigerator, the adventures of hygiene, never mind housework! everyone said something like "if you ever need any help dot dot dot." so i called!
[there is a wonderful question that i am starting to use in my dialogues with myself: what is the worst that could happen? that weeds out a bunch of... stuff.]
i bet your friends really are just waiting for a sign of what to do. you are still the same person -- you are probably stronger than ever for all that you've been through. one of the easiest ways for me to get back to friendship was/is to ask for rides to doctor's appointments. i had a chair that broke down enough that it could fit in the trunk of a car. they had to learn how to do that -- and they can't be thinking about how to act when they are packing heavy old batteries! then i would take them out to coffee or lunch. i am shutting myself off again these days because of my fear of being unintentionally harmed [a long story!].
your family doctor, what a great doctor! she has probably been waiting for the diagnosis to happen, just not knowing what it would be. having someone like that to keep the circus of specialists in line, and to LISTEN to you -- she must be great. keep her informed about what's up with you because she obviously cares.
the problem with your family -- you are a significant part of their life, no? why aren't they extending themselves? a big "pooh" on them!
sorry for going on so long -- we've got some sort of little virus going on here and i always get hyper. can't read, can't relax.
please take good care of yourself! from all that i have read about fibromyalgia and ms, getting rest and dodging stress, loving yourself first -- what is the worst that could happen?!
prof-de-rien |
|
|
January 5, 2006, 6:27 pm PST
Quote From: pandas Hi Prof, there is no cure for it except for a really drastic one. There is no thearapy that can help this pain. I actually did reach out to 2 of my friends, but they have no idea how to react to me in a wheelchair. That hurt. Basically my family is all I have, and my family has their own life. The reason they looked in the right direction is because I have been begging for a MRI I knew there was something wrong. I also have fibromialga and that is from a fall I had when I was 14 (fell 9.5 feet in gymnastics) I knew from an early age that I will get fibromialga. Over the years I was always on crutches for about a week or two. For me that was normal. So when this happened I knew it was different. I also knew that it was going to be perm. That was the feeling that I had and no one believed me of how I felt,except for my family doctor. She has been the best to me. I would call her because I needed a shoulder to cry on. It didn't matter what I needed she was there and she still is. When I told her that something is really wrong, she believed. My doctor did all the phoning for specialists, wanting updates etc. That is mainly the only reason that I am telling my story so that other people in the same or different problem can come together. Sometimes all we need is to know someoone is listening
pandas Hi Prof...the drastic cure is very drastic, it is a 50/50 chance of survival. This cure is to go to the hospital, get your bone marrow taken out, cleaned and separated, then go on a long 3 months in isolation during your chemo, the last part of this is if your liver doesn't start to work then you are dead, if it does work, then you live. At this point, my liver is already in danger, so i couldn't go for that cure even if i wanted to. If my liver, gets better and that cure is available I just might do it. I live in Canada and we have a bus that is called "para transpo". This is the bus that i take to my appointments. The only problem with the bus is you have to call 1 day ahead, and that becomes very frustrating. The phones are always busy. My sister is the only person that drives and she has the car only on her day-off which is always monday. the other days of the week she works and her husband takes the car. My mom no longer drives as she feels at her age she doesn't need to drive. I have tried and tried to get a couple of my friends over but they always say "I'm busy or I got called into work" etc..Its very disheartening. I get that same answers from my sister, she promised the grandchildren, or she promised on of her kids. I ask her in advance and I still get put to the end of the line for when she has time.
pandas |
|
Return to the Message Board
