What disease?

Or I should say what diseases; and yes they do cause me dis - ease.
The thyroid disease was diagnosed first - Hashimotos Thyroid which is low thyroid or hypothyroid caused by the immune system.
I discovered I had Von Willebrand's next. It is a bleeding disorder that involves the blood clotting factor 8. Then I was told so many times I had Fibromyalgia.
Next came Sjogren's Syndrome due to the dry eyes and mouth.
Last, and I truly hope it is the last, is Polymyositis with Arthritis.
So now you know my diseases but you also know my attitude is that these conditions are not all there is to me they are only a very small part.

Are you buckling under stress?

One of many versions of The Scream, painted in 1893 by Edvard Munch


Well there is a test, or many, if you would like to try one.
The one I did is free and takes about 4 minutes and you get the results straight away and you don't give your name or sign up.

My overall emotional well-being, on a score of 1 to 5, is 3.44 which says I am stressed, almost very stressed.

The Quality of Life Score measures my satisfaction with life, including overall self-esteem, health, friends, family and work. 2.9 extremely stressed.

The Symptom Distress Score which measures my symptoms of depression, anxiety, and hostility says I am well adjusted - 4 out of 5.

The Level of Functioning scores how well I get along in the community. 3.63 which says I am very stressed.

Apparently, Behavioral Health Concepts, say I would benefit from short-term counseling with a professional counselor and that "proper rest and exercise, relaxation strategies, and religious faith" also contribute to emotional well-being.

What this all says is while I am not my disease it obviously has a big effect on my stress levels because it is the thing in this whole measuring that I can deal with but not "fix" (I have an incurable disease).

Disease by Dean Rands

It tears me apart to say the words
To think the truth for just a second
Because then it's real - not a lie
And I'll have no choice but to forever cry

But still it's something I must face
And I must fight - win or lose
Because it's there - inside of me
Hidden in my skin - hard to see

I'm truly scared of what could be
Of what lurks beneath my skin
It may be hard for you to know
Thats because I cover it with a show...

Please read the rest of this 18 year olds poem here at a poetry community site called Poems and Quotes.
P.S. Dean. I tried to find you, even tried to register so I could get your okay but could not??? Hope it is okay?

Forgot my ABC's

I went to the immunologist after about 2 years and when he asked me what medicines I was taking I could remember the names but not the amounts! I felt like I had let myself and him down. I use to carry this information in my bag at all times, then I suppose the tablets changed and I have just not updated this information.

So remember your A, B,C's ...

Are you taking any tablets and medicines?

Bring them with you to the hospital and all appointments - even follow ups.

Carry a current list in your wallet.

The reason I started carrying the list at all times was after I was suddenly admitted to hospital and the same thing happened - I could remember what I took but not some of the names or amounts. This delays treatment and makes it harder for the patient to get the proper treatment. Also I was kept in overnight and the hospital kindly made up a script for my essential medications - very professional treatment, don't you think?

PHOTO THANKS TO jgibson3825

Dear Doctor,

Re: my diagnosis

I am writing to let you know I have finally been diagnosed and I was hoping you could give me back a few years.

I have had symptoms for over 10 years and I have finally been diagnosed with polymyositis. This is an inflammatory myopathy that causes muscle weakness and muscle pain in the muscles closest to the body. It is an auto immune condition.

I was diagnosed from a muscle biopsy. I have been to so many specialists and I hope that maybe you would remember me so that if someone else comes into your office saying they have muscle pain in their arms and legs, and a feeling that their muscles won't relax and difficulty with fine motor skills and an elevated CPK, that you take the time to listen and try and work with that patient to find out what it is. For 8 years no one offered me a muscle biopsy.

Merry Christmas,
yours sincerely,
G. N.

P.S. I am not my disease (but knowing what it is has helped me greatly)


TO: the endocrinologist, the pain specialist (who said it was fibromyalgia), the psychologist (that said I had cognitive defects and referred me to the immunologist), the neurologist (who gave up after finding out it was not MS) and the rheumatologist (who diagnosed and treated me for 2 years as having Sjogren's syndrome).

PHOTO BY bwavobunny

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

The wheels turn slowly

Yes, I have a diagnosis, of sorts - inflammatory myositis...possibly polymyositis but I am still in limbo land. The prednisone - 1st line drug in myositis and many other autoimmune conditions - did not work according to my rheumatologist. I'm not sure if I agree as the large muscle mass above my right knee has miraclously disappeared after years. The rheumy did not know this and she went by CPK and muscle strength and muscle pain which had not changed enough.
(The prednisone had side effects even after 2 weeks - my eyes were a bit blurred and dry, I could not get to sleep for hours, I was very hungry all the time and on the last few days my hair seemed to be falling out more than normal)

So what did she recommend? Pain medication, which I have been living on for years and physiotherapy. My problem is I still cannot get into physiotherapy at my local hospital and I am still on the waiting list. This is very frustrating to me as after having a muscle biopsy and being given a diagnosis I am still not doing a thing different than before my diagnosis. Well I suppose I am doing one thing which is to learn a bit about Myositis and contacting others who have it. Please comment here if you do also have one of the forms of Myositis as I would love to hear from you.

Finally Diagnosed with Myositis

Finally Diagnosed with Myositis OR No I am not Crazy.
I overcame my fear of a muscle biopsy (due to a bleeding disorder) and have finally been diagnosed with "inflammatory myositis" - which is a muscle disorder with all of my symptoms - muscle pain, muscle weakness, swollen muscles, difficulty swallowing etc etc etc. It affects the muscles closest to the body - upper arms, thighs, neck, shoulders and makes them ache and tire easily. It is an autoimmune condition, a connective tissue disorder and comes under the heading of neuromuscular disease.
My new rheumatologist was the person who diagnosed me but it could have just as easily been a neurologist ( Goodness knows I have seen so many! )

So the moral of the story is Never Give Up. Fight for yourself as no one else will. Do not accept the doctors who tell you 'it is in your head', 'it is menopause' or 'just your age' or 'because you are putting on weight' or 'just mild fibromyalgia' or 'you are not taking your thyroid meds properly' or 'if it was really bad you would be in a wheelchair' or 'just take these tablets' (and now these, and these and more of these). Only you know your body and your symptoms. Some times I started to think I was imagining it and I was going crazy.
I am pleased to finally have this diagnosis but will also fight to get better as I am Not my Disease.
P.S. I could name each doctor and what they said but "you know who you are"

LINKS : Facts About Inflammatory Myopathies (Myositis)

Myositis Directory