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Polymyalgia at 42 years of age

#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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Chronic adventures

Well, I guess my b12 is super low. Why? I have no good reason. Wait, AND Glossitis!? Just another day in my wacky world of chronic adventures!! Waiting for the last test to come back, so this waiting is done. For now. Yah chronic sh*t! #forreal #ChronicPain #ChronicIllness #Erythromelalgia #RareDisease #Colectomy #neuromodulators #Arthritis #IBS #constipation #Migraine #Disability #MentalHealth #Depression #Anxiety #PeripheralNeuropathy #Undiagnosed #raynauds #Hypertension #GERD #Heartburn #glossitis #Inflammation

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What food and drinks do you use like medicine?

I use Cola for weakness, sickness in the stomach. Salt when I feel weak probably due to Salt deficiency. Calaway Seed for bloathing. Chocolate for PMS, sadness, loneliness.
And you Mighties?
#EhlersDanlosSyndrome #ChronicIllness #Fatigue #POTS #Colectomy

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Surgery Scheduled. #Surgery #InflammatoryBowelDiseaseIBD #IrritableBowelSyndromeIBS #CrohnsDisease #ChronicIllness #ChronicPain #Colectomy

In a little over a month I will have an open total colectomy (the removal of my entire colon as pictured), my gallbladder removed, and the placement of a feeding tube (called a GJ tube). This month I am in pre-hab: trying to build my strength and physical status up to a level that will be safe for the surgery and recovery. The pre-hab will be hard and challenging and the re-hab will be even more difficult. I’m trying to take everything one step at a time and right now my focus is trying to get my nutrition and weight up even just a little if I can’t, the surgery will be rescheduled. They are giving me a chance to rebuild orally but if I can’t, they will have to place a #TPN line which I really want to avoid. This is not anything near what I could have imagined for my life at this point. My surgeon and gastroenterologist have both said my intestines are in the worst shape they have ever seen. My hope is that this surgery helps me get some semblance of a life back. I miss people, I miss places, I miss doing stuff. this illness has robbed me of so much. Many days the pain is so intense I can’t move let alone talk. Right now my surgery is scheduled for August 29.


Heart monitor update #HeartConditions #InflammatoryBowelDiseaseIBD #IrritableBowelSyndromeIBS #Gastroparesis #ChronicIllness

So I’ve completed the 48 hour holter monitor. I turn it in tomorrow. Yesterday was really hard. I had very intense palpitations and had a complete break down with sweating, dizziness, vomiting, shaking. It was awful but the bright side is that I was wearing my monitor through it all so I’m hoping they will be able to glean some answers from what they find.

It’s so helpful to have my husband back home. He has been taking really good care of me. Making me soup, getting me water, and keeping track of my symptoms. He is also able to go pick up prescriptions and stuff like that which is just not possible for me to do alone right now.

Next week is a big week for me. I have a lot of doctors appointments including my surgical consultation for my #Colectomy. I’m nervous about it. I am worried the surgeon won’t be able to do the operation because my health is so poor. I’m trying not to get ahead of myself but it’s hard. Especially when I can’t do anything but lay around and worry all day anyway.


Struggling #Gastroparesis #Colectomy #Anxiety #Depression #FailureToThrive

I’m really struggling lately. My anxiety, depression and emotions are on high lately. I have been requested to have IV hydration and oral nutrition by my doctors only to have the orders denied by Medicare because I’m not tube fed YET. I’ve had a total abdominal colectomy which causes increased dehydration, I can’t gain weight, I can’t eat enough or drink enough shakes to gain weight but the doctors won’t consider tube feeding me because I can eat orally, just not enough. Recently I had a CT scan with contrast showing I have a fatty liver. I’m 93 pounds at 5’4!?
I’ve undergone several blood tests and now have to see a pulmonologist and a doctor for my liver. Between panic attacks, anxiety, depression, my current health and all medically necessary treatments denied I feel treated similar to someone who doesn’t matter. Like my life doesn’t matter to these insurance companies, the doctors that have failed me, the waiting for the next appointment. I’m 53 years old and I have beautiful grandchildren I want to see grow up. Lately I’ve been struggling with overwhelming hot flashes and then so cold, my heart races, I’m bloated after one small meal. I’m getting so tired of fighting to be taken seriously, tired of appealing denials and getting no where. I’ve even started a petition at for dignified healthcare, demanding they cover medically necessary life sustaining treatment for all. We are all individuals who don’t fit into one tiny box. With all of my out of pocket costs I’m exhausting our savings. My life matters, your life matters. Keep fighting because you are loved, you are unique and you are important! Don’t ever forget to be your own best advocate, even when you feel like you’ve hit a brick wall! Wherever you are in your struggles know you are never alone!

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New Year Still Sick #GP #GeneticDisorders #Colectomy #Depression

I’ll start by sharing my thoughts. I’m still working on recovery 18 months later. I’m 1lb heavier than I was prior to surgery. My vision is awful, my hair is falling out, my once beautiful teeth look horrible and I’m very down lately. I feel like no one (physically close) gets it. I’m searching for support in a place where everything seems to be a competition. I feel I’m in a place right now that I should be moving forward, yet I feel stuck. I feel stuck because I either have to fake that I’m okay or if I let anyone know I’m down, then all of the sudden they’re down. Everything going on with me now since my colectomy is a new issue. New issues mean more doctor appointments, more money and I literally feel like saving money is more important than my health issues. As I write this I want to cry, I don’t want to be a burden, I don’t want to suck the life out of the people dear to me. However, I don’t feel like they get it, they don’t get what I endure daily, they say they do because I tell them but they don’t physically get it. It’s like this is all just something I should be all well now after surgery. I’m battling malnutrition/malabsorption symptoms but my blood work is fine? I’m supposed to be on nutrition drinks but insurance won’t pay because I’m not tube fed?! Really?! Our healthcare sucks and I can’t imagine my family dealing with that or a colostomy bag. I apologize my emotions are all over the map. I miss the old me. I miss life. Wherever this New Year takes me I’m giving it to God because I don’t even know which way to turn.

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