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To all..hang in there. Be tough!
1 Replies
NelleN - November 21

I have not been able to except this disease either. I have never been on a site or read stories of other’s life before now. Even though I am in the same boat as you all are in, I feel so sad for you all too. No one in my family has this either of my rheumatoid/fibromyalgia disease, and not that it is heredity doctors say, but yet the doctors ask the question. It is hard to wrap my head around the fact that I could go from being able to go full throttle working and able to do hobbies to not being able to tear toilet paper.
In the past I have gone to rheumatoid medical studies where you stay in-house and get paid for it. Among twelve people or so, every one of us are affected differently by meds. Currently I am on a list to participate in a fibromyalgia study as soon as I can qualify under their conditions. I have found no support groups but my husband does recognize what I am going through when some doctors, even in the field, seem not to get it. The pain on my head, which I have had for years, feels like it is bruised. The doctors haven’t been concerned about it but now, finally, I know that it is from the Fibro. I also have a neuroma on my toes that hurts to walk. So, I truly, hurt from head to toe.
During the past 10 years all of the many doctors I have been to, have prescribed meds to me and even the herbal meds suggested by friends, really don’t seem to help. I have been on and off of the methotrexate that seemed to help but then it zaps your energy. Currently I am taking prescription meds that seems to keep it at bay. I feel it is still there but have just built up my tolerance for the pain.
In hopes to help other people, what I have learned is that even when you feel bad, go and get the lab blood work done. In the past I would only go and gets labs when I felt good enough. I didn’t what to drive myself and didn’t want to bother my husband or friends to take me there. But what happens is when doctors or reports sent to other people, perhaps Disability; they see this and think you are fine. Ten years ago I applied and was denied for disability and didn’t appeal because I thought you had to be in a wheelchair to get it. I have now applied again for Disability and have been denied, but will appeal this time. If they do it again I will hire a lawyer. Can you work consecutively for 12 months? I have even tried to start my own business from home but can’t even sit at the computer for the time allowed to complete the tasks.
The few friends I have (un) fortunately know friends or relatives that have this disease and they can relate to my condition. One friend, whose sister has fibromyalgia, gave me a can opener that is like no other I have seen before. It is just a piece of metal that fits over the lid and just pops the vacuum of the jar. It is made in Canada and you can find it on the web. The name on it is Lee Valley and costs around $10. This will help if you have carpal tunnel or just don’t have the strength.
It would be a safe bet that the stress from me getting a divorce, losing a job, starting in a job that was the most fast-paced ever, plus ending a friendship, buying a home, starting college, getting married and adjusting to that was an over-load for me. At one point during college I had to drop out for a semester but I did return and got my degree. It was hard and at times when I could barely turn the knob of my door to get out of the house, then to crank the car, or hold a pencil at class. Then three years into my illness I wrote a song and since then I have written another. If I had given up I wouldn’t have known I could do this. Will the songs be picked up? I don’t know… but it gives me hope. There are times that I feel like this is it, and I must be dying and feel like that I won’t feel any better. This struggle may go on for a month or so without letting up. As I have always be an active person and high strung I have had to re-adjust my ways. For instance learning that not all things that I want done, really can be put off until I’m better.
I too, don’t know if there is anyone out there to help us and we may just be on our own, it is a hard life but we have to hang on. Hold on to a hope because something good may be just around the bend.


Fantod - November 21

If you are denied for disability again, try Allsup Inc. They are online and will handle everything for you. A friend of mine used them and they had her claim sorted and paid within six months of the FIRST request for disability. Take care.



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