#Rare disease #Rare disease #Rheumatology #ChronicPain #Disability #Colectomy
My thought: I am 42 year old female from Middle Europe. I have had recurrent inflammatory reaction in my whole body, they usually start after a common cold
My inflammatory levels sometimes went up to 25000 Leucizystes and C-reaction Protein(CRP) 140.
I got into Burnout depression in February 2019. I was too often soooo sick , and the CEO was terrible, that I had to take a day 3 days, once 3 weeks off.
Then I fell........... Into a black hole ⚫️⚫️⚫️
I asked for disability benefits.
Didnt get anything so far.
Now 3 Years later I work part-time again (3 days per week, 11-12 hour per day)
But I have money problems. Cant pay my tax bills. Living costs are just enormously high, so I sometimes dont know how to get food at the end of the month.
And I still dont get monetary benefits from anywhere.
I almost died a month ago, due to inflammatory reaction, recurrent throwing up and salt deficiency.
After the near-death I needed a wheelchair for the first time in my life.
About Wheelchair use in our public State hospitals : it is not like in the US netflix shows, when patients are taken anywhere by wheelchair.
It is more like, "oh, hello nurse, I want to get some fresh air but I am too able to walk, so mayyyybe might I borrow a wheelchair?"
Nurses were really good. Professional and so friendly. So they gave me a wheelchair.
2 days later the doctor took it away from me.
When I entered hospital, I way already soporous and always fell "asleep " - due to severly low sodium.
I am so glad to have survived
But I have the next flare. Spent the morning in a fancy private hospital in the City. They were so nice with me, and still totally professionals, so I feel good to get treatment in this hospital for my recurrent inflammatory reaction.
If my body gets better within 10 days, when my 2 week vacation starts, I want to go wild camping in the woods. It is free of charge, generally accepted as libg as you dont behave like a wild boar. I can walk quite well on flat streets and paths , and I just live walking in the nature a lot. And sleeping outside, away from daily life. I want to do that .... hope my body will be better by then.
So now I am waiting for my blood results. I guess they do some pretty upspaced lab tests. And I see my rheumatologist next week. There is hope that I can get on "Biologicals "/ monoclonal antibodies.
So actually my question to you Mighties.
Does any of you have inflammatory body reactions with muscle pain, fever, Night sweats, fatigue / malaise, loss of apetite/ loss of weight?