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# EDS& #Rare Disease Day
#EhlersDanlosSyndrome this is what Rare looks like
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Praise be to God in suffering! #god #chronic pain #Rare Chronic Illness
Praise be to God for receiving us through the trial of pain and its hardships of suffering that strengthen and shape us into something new; and help us to grow in long-suffering toward spiritual maturity. Remember that God‘s love for those that suffer is unwavering. Abundant grace and infinite wisdom are found at the heart of chronic physical suffering.
Stay strong everyone and pray to endure! Amen!
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Tdap #Vaccine side effects?
Looking for others experiences here: I was recently told I have a weird autoimmune disease that causes my body to not hold on to my old vaccines and am now having to repeat childhood vaccines. Yesterday afternoon I got a Tdap shot (it’s a combo for tetanus, diphtheria and pertussis/whooping cough) by the time I went to bed my whole lower body waist down was ridiculous sore, like muscle soreness but worse than anything than any workout could do ( and I can’t workout because of all my other illnesses) so much even the blankets hurt and it hurts even to sit on the toilet, I can barely walk, but arm is fine! Has anything like this ever happened to anyone else? #AutoimmuneDisease #Rare disease #NeurologicalDisorder #Tachycardia #GastrointestinalDisorder #bonedisease #maybemito #stillfiguringthingsout #vaccinesideeffects
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Polymyalgia at 42 years of age
#EhlersDanlosSyndrome
#Arthritis #LowMuscleTone
#Depression #axiety
#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 survived.
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?
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Heavy
Tonight, my heart is heavy.
This feeling just sits there. It just sits, like a dark shadow, in my stomach. I can’t name it, only feel it.
And it doesn’t feel nice.
Insurance. Doctors. Therapies. Advocating. Forms. Worrying.
How is there supposed to be room for cooking? Cleaning? Fixing?
Self care? Ha. I’m lucky to have time to shower.
It’s midnight. And, tonight, I’m heavy with a burden no one should have to carry.
#medicalmom #Rare #PID #HealthInsurance #Apraxia #AirwayDisorder #chronic
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Invisibility Is (not always) A Superpower
I start to get anxious just thinking about it. It should be something so simple, but it’s not. The careful planning, assessing and attention to details is vital. What’s happening before this? What’s coming up in the week following? It’s not a question of if she’ll get run down. It’s not a question of if she’ll get sick. It’s a question of when. And…is that birthday party, week at day camp, sporting event, etc actually worth it?
But here’s one of the worst parts: you won’t get the weight of our decision. You won’t know why we couldn’t play that night or why we skipped the game. Because, the fact is, you don’t understand that she’s sick. Not really.
You know we have the appointments. You know we get blood draws. You even know we spend nights out of town to see our doctors. But, you don’t understand. Your kids get sick, too. Your kids also get tired and emotional. Plus, she looks just fine.
She looks fine. But, that’s one of her superpowers: invisibility. She saves it for us. She keeps it closely guarded. If you ask her how she’s feeling, she’ll say, “Good.”
What you didn’t see was waking up and complaining she was tired. What you didn’t see was the terror in her eyes when she had blood in her stool- again. What you didn’t see was her complaining her belly hurt, or worse- getting sick. What you didn’t see was her retreat upstairs to lay down instead of play. You didn’t see her struggle at school because she “just couldn’t think “ or she’s “just not feeling herself.” The simplest questions tripping her up. What you didn’t see was her breaking down and crying over and over again from 4 pm on because she's so tired that she’s an emotional wreck. You didn’t see the multiple medications she’ takes to help her feel ‘normal.’ You didn’t see her as she got yet another a fever, yet another antibiotic, yet another doctor visit. And, you didn’t see her sleep a full 12 hours just to get up and do it again.
She has a superpower of invisibility. You may not understand why we’re not coming, but I promise we would be there if we could.
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What do you wish you had more of?
Take what you need or add your own in the comments below, Mighty fam!
energy time support fun connection rest encouragement good weather peace pain-free moments stability motivation distraction strength patience luck
#Rare #RareDisease #ChronicIllness #KidneyDisease #KidneyHealth #kidneyawareness #PH1
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Does anyone else have Sarcoidosis in many areas if their body?
I have Sarcoidosis in lungs, skin, eyes Sarcoidosis. Was Diagnosed with lung Sarcoidosis at age 21, now at age 59, I have it in 2 other areas. #Sarcoidosis , #chronic pain,#Pain ,
#Rare disease, #Support
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How can I get my body to understand it's time to sleep? #Rare disease #sleeping problems
Hello,
Although I'm quite new in the group, I'm really busy helping where I can or at least hoping to.
Since a few months I am really awake in the evenings, preventing me from sleeping when I should be.
I wake up as usual and I don't sleep during daytime, so I'm sure to be tired in the evening. But than I really get 'alert'. I think it's a drug side effect. In my family many get an opposite reaction on drugs which should make you tired and drowsy.
I know I can't take anything with codeine after 4 PM or I'll be awake all night. Even hardly get affected by valium. Now I have to take morphine to cope with the pain. I think it's having the same result: wake me up. I take 2 extended-release pills a day and an extra instant form when even the pills are not enough.
Any suggestions how to teach my body to sleep at 10:30 PM instead of 2:30 AM?
Especially when I start studying again in February, I'll definitely need my hours of sleep. So I still have time to get this fixed.
