Tuesday, November 9, 2010

A merry go round that is not fun

Many diseases may be clear cut but if it is one thing I have learnt in the last 10 years it is that diagnosing an autoimmune disease is not. I have been to so many doctors and specialists who just pass me on to the next specialist - the medical merry go round - and I have almost given up many times. I have been given a few diagnosese over the years but when treatments do not work - after a year or so - they decide it may not be what they first thought. I have also been told it might be MS or Lupus or Fibromyalgia or Chronic Fatigue or Ankylosing Spondylitis (this is a real disease, I did not just make that up). I have been shocked that many well respected specialists are happy to give suggestions of what it might be. A lesser person might have become very scared but I am not my disease. This mantra has helped me as no one else has.

So, what is the upshot of all this? If you are not well and you do not have a good G.P. on your side, you must be your own advocate. This is very hard if like me you are being told that it is definately autoimmune in nature. Why? Because there are so many autoimmune conditions and it is very hard to narrow it down, especially if the doctors cannot. One place to start is autolist, where they list disorders in sections such as Neuromuscular (affects nerves and muscles) or Vasculitic to (do with blood vessels and veins) etc. They also have an alphabetical list of over 80 immune disorders and their symptoms and recommended links.

Also consider that only you know your symptoms and how you feel and maybe you are not explaining them in the way that the specialist expects to hear them. Take pain for example how many kinds of pain are there and how do you explain them? Many diseases have specific measurable signs that show up on EMG's or blood tests but many do not. People with these symptoms are often left undiagnosed - put in the too hard basket.

Be strong. Do not be afraid. You are a detective on an interesting and difficult case and above all remember You Are Not Your Disease.
Thanks mel2u for drawing

Tuesday, November 2, 2010

You see, you cannot see.

"You cannot see what is going on inside my head. You cannot see what is going on inside my body. I see this as a plus - all good.

If you could see what was going on inside my head - the verbal diarrhea - oh it would be very, very bad.

If you could see what was going on inside my body:

1. it would appear grotesque, a major battle ground, cell against cell, body attacking it's own body - a very frustrating, confused battle where no one wins (or something like that)

2. you would feel sorry for me and I don't want your pity.

This way at least if you meet me in the street you will not know, I can pretend, keep up appearances. You see I am not my disease.

If you know me you may be one of those who sometimes say "Hi, your looking good".

I'm not my disease. "
This was my very 1st post back in 2007