Introduction new member

[Guest guest]

Hello all,

I'm Micha, 43 years old, living in Europe, the Netherlands. A long time ago I was diagnosed with arthrosis in my neck and last year with fibromyalgia.

At the moment I'm in a small physical rehab program for the fibromyalgia: a half hour of physiotherapy in which I learn to walk better and soon the occupational therapy to help with coping with my disabilities in daily live.

After this, about in September, I will see a rheumatologist specialized in S.L.E.

Over the years I got increasing health problems. I seem to catch any virus that's spread around. By now - just to name a few things for it's such a long list - I have several sorts of rashes over my body red ones, flaring up occasionally, and flaky ones. Years ago my house-doctor put me on antibiotics for supposedly bacterial infections or viruses. They didn't seem to help and my house-doctor kept given them, until I seemed to have an allergy to one of them. I got apathan, which disappeared when I stopped taken them and I also got two tiny red spots on my upper arms. I kept these for a long time. When I was very tired, they flared up.

My allergic reaction on this particular antibiotic

Last year December short after the fibromyalgia diagnosis, I started to bleed from my head. It has stopped, but returned a few times in periods I was ill. in these periods I get a red swollen up face just like I had a sun-burn and sat for too long in the sun with my sun-glasses on, but than if it's infected as well. It differs a bit how this starts, sometimes with flu symptoms like fever and swollen up glands.

Afterwards and during these episodes new health problems appear to never go away again. To me that's the biggest worry.

There seem no stop to it.

Within a short period my legs got worse that I can't walk on crutches much longer than 100 meters.

I have muscle spasms, cramps, numb feelings in my legs, tingling also in my upper body, internal problems, nudes on my bones, visual problems, sensitive for light and sun and endless many things that I forget them myself, even when I won't be such a forgetful person.

Since short I have at least my house-doctor on my side to listen.

After she heard my long update, she agrees to see a specialist in S.L.E..

I wouldn't even had thought of lupus at all when other people with lupus spontaneously responded on a forum and even wrote me privately, also meant for people with fibromalygia. Then I again began to read, for example about Mixed Tissue Disease and phoriasis. Although I have known a few people with phoriasis and my rashes look differently. I phoned the Dutch lupus foundation to ask for a brochure when I got in a conversation and gave me much to think about.

I had many hobby's like acting, writing poetry, articles and columns, singing in a choir and occasionally writing songs for the choir. Also dancing was a hobby, especially tap-dancing.

I thought of making taps under my crutches for fun, but it's probably too slippery. I draw too. I think I like to go back to this.I can do this at home. It will be an item for the occupational therapy for there seem to be small helpful tools. I just can't use my hands so much.

Usually I don't use any capital letters than only for the first letter of someone's name. I type with one hand, before I know it, I can't use the left part of my body no more.

From a profession I'm a social worker. During the last eight years I worked in the health care to advocate and negotiate for a better policy and the rights of clients in the mental health care.

Last year I needed to quit the job. I was on a zero contract, meaning no work, no pay. Yet so often I was at home and tried as much work done as I could, and then had weeks I didn't get anything done and they still kept paying me.

In the end as it my health got worse I had to make this decision, also for the sake of the department of this organization, with a bleeding heart. For I loved doing it.

Now I'm on social security disability and frequently washing myself is a problem too.

I live alone for twenty years and now I need to find my way around in accepting help within what I found until recently, my very private disabilities.

I'm not a hero when it comes to doctors either. I'm still working to overcome memories of a severe past of abuse, especially the part with doctors. Last year when I went through a MRI to rule out MS,

it did okay while in it, but the night afterwards I severely relived old doctors memories. I'm on an other list where I can share these memories. Also I notice I grow over old fears rapidly now.

So by the time, I'll see the specialist in lupus, I hope I have overcome more fears and memories. I don't know what I need to await, I think some tests might be scary, yet I hope the past will

not force itself upon me afterwards.

Also I have faith I will grow into partly being less independent and finding my way around within being depending, a way of independence.

I had a severe depression for the losses, I'm moving out of it and I am grateful too for the interesting amount of things I had been able to do.

I'm glad to be here on your list and looking forward to meet you all. I surely will have questions. Sorry, for the long post.

Take care all,

micha.