Showing posts with label sarcoidosis. Show all posts
Showing posts with label sarcoidosis. Show all posts

May 22, 2009

Slowly we are getting somewhere!

Dear Bloggers,

Do I have to call myself a “sick” man?
I went to the rheumatologist this week and it was getting a bit closer to a verdict, at least it is not rheuma, but on the x-ray of my lungs there were some doubts and I will be send to the next specialist.
On the second of June, I have an appointment with the lung specialist.
To do some more tests and hopefully to elimenate the Besnier - Boeck disease.
This disease is also quite good in hiding, although if you get the granulomas on your skin they are pretty obvious, I would say.
I have just been wandering why this disease is so hard to figure out, as we are having so much knowledge in this western society.
Oh... for crying out loud can somebody tell me what is going on.
I found the following item on the wikipedia site.(this is pretty depressing, nice stuff for rainy days.)





Sarcoidosis (sarcoid = sarcoma-like, -osis = a process), also called sarcoid or Besnier-Boeck disease, is a multisystem disorder characterized by non-caseating granulomas (small inflammatory nodules). The cause of the disease is still unknown. Virtually any organ can be affected; however, granulomas most often appear in the lungs or the lymph nodes. Symptoms usually appear gradually but can occasionally appear suddenly. The clinical course generally varies and ranges from asymptomatic disease to a debilitating chronic condition that may lead to death.





The cases that it leads to death are not even 5% but it seems to be difficult to diagnose it.
Maybe it might be more positive if they can elimenate sarcoidosis it will be diagnosed as fibromyalgia, a very painful but not destructive disease.
(anyway I will be placed on a course together with my wife how to deal with the pain and how to deal with practical things in life.)
Also for my partner is this a complete turn around and she will have to learn to help me in so many different ways.
As it will be difficult for the both of us to deal with the fact that I cannot do certain things in life anymore and she has to offer a helping hand.





Fibromyalgia (new lat., fibro- fibrous tissue, Gk. myo- muscle, Gk. algos- pain), meaning muscle and connective tissue pain (also referred to as FM or FMS), is a disorder classified by the presence of chronic widespread pain and a heightened and painful response to gentle touch (tactile allodynia).[1] Other core features of the disorder include debilitating fatigue, sleep disturbance, and joint stiffness.

I was also send to dietician to loose some weight and get another style and rythm of eating.
As soon as they have diagnosed what it is, I will be send to a fysiotherapist to learn to move in the right way and have breaks in between and to force myself to rest, eventhough I have a good day.





It is great to finally know what it might be, but on the other hand it is scarey.
Thank god the sun is shining on this cloudy medical future.
Well let me end with the following qoutes:"That pain doesn't hurt me, neither does life, it doesn't matter what happens, I will survive!" and "I think what messes us up the most is that we all have this perfect picture of the way things should be.. So turn your face to the sun and the shadows will fall behind you."

The Old Sailor,

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