Vasculitis

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Grieving what will never be.

I’m so tired. I found out a few days ago that I cannot have children, I cannot get pregnant and carry a baby to term, let alone safely.
I have Lupus nephritis- lupus in my kidneys. I have anti-phospholipid antibodies syndrome, infertility is a major symptom of this condition too.
You kind of need healthy, functional kidneys to have a baby, and have blood that functions normally or at least efficiently enough- to carry a baby. I have neither.
People have been telling me “well you can always adopt!” But that’s not the point. Besides, I was adopted when I was a baby. I’ve battled with the difficulty of being adopted- I couldn’t adopt a kid to build my family as I couldn’t help them cope with their experiences when I can barely do the same for myself.
It doesn’t replace the fact that I feel so empty, knowing that I should be able to have a pregnancy. Every other woman on the planet is able to have a baby. Almost every woman on this planet has functioning organs and blood at the very least. I feel like I have failed in every single aspect of life a human could fail in. And on another stupid note, who on earth would want to marry an infertile, chronically ill, medically fragile women?! No one. Or at least not anyone who would fit my standards of basic human decency. I’ve been too disappointed by men who’ve tried to take advantage of me for those reasons.
I’m broken on a cellular level, my organs are broken, my mental health is broken… and now the one thing I was counting on, to complete in my life as a women? I am broken there too. I’m a failure of a woman, and a human. How do you move on in life when your future is wrecked in every single way possible, and it’s set in stone? Every option is awful and I’m so so tired of all of this. #Lupus #LupusNephritis #SystemicLupus #AntiphospholipidSyndrome #Infertility #autoimune #Vasculitis #MentalHealth #Anxiety #Depression #PTSD #Grief #advisemeplease

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23 reactions 8 comments
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I hate prednisone

So I was on a pretty heafty dose of prednisone last year during the summer die to my Lupus. I had very limited mobility and it was overall a pretty terrible experience.
Anyway- I ended up gaining a lot of weight very quickly, and it’s become very difficult to loose.

I used to be 190LBS, I’m 5’6, with broad shoulders. So I looked pretty healthy, and I was very confident and proud of myself!

But because of my Lupus and medications like prednisone, I’m now 235LBS and I just feel awful. It seems like the prednisone has made it so much harder to loose weight., even thought I have stoped taking it months ago!
I’ve been dealing with depression and anxiety, as well as overall crippling fatigue- people, including doctors- keep telling me “just get moving! Go on walks! Eat healthy! Don’t eat processed foods!” But they seem to forget I struggle with chronic pain, horrible fatigue, exercise and heat intolerance and an overall lack of good days.

So how on earth am I supposed to loose weight? So I can feel better about myself again? I’m loosing hope with it, and I just feel so lost and lonely and exhausted. I’m not flailing anymore,so why do I feel so bad?

Chronic illness is becoming too much for me.
#Lupus #LupusNephritis #SystemicLupus #SystemicLupusErythematosus #ChronicFatigue #ChronicPain #KidneyDisease #AntiphospholipidSyndrome #Vasculitis #Depression #Anxiety #Prednisone #CheckInWithMe #PTSD

39 reactions 8 comments
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Happy New Year

Ive been living with depression since a young age. Pancreatitis for a decade, and recently was diagnosed with PTSD and a new auto immune disease - vascultis. Eff me right? 😅🤦🏼‍♀️

Just looking to meet like-lifed people who understand chronic illnesses (physical and mental) 🙂 - y’a know, just cause we ‘don’t look sick’ doesn’t mean we aren’t fighting serious battles right?🙋🏼‍♀️

All the best in 2024! Hope to meet some of you soon 😘💁🏼‍♀️

#ChronicIllness #PTSD #Depression #ChronicPain #ChronicPancreatitis #Vasculitis #MentalHealth

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34 reactions 10 comments
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Polyarteritis Nodosa

Does anyone else have Polyarteritis Nodosa or Vasculitis? I'm waiting on a definite diagnosis from recent blood tests; the ones that have come back are normal but the more indepth ones will take a few weeks and I'm having a full body CT scan this week.

The gp I saw sent a note to Rheumatology and the Service Provider Clinician said: "There are many other more likely causes rather than a Rheumatological one" so I think they want to wait for all the blood test results to come back to confirm for definite."

1 reaction
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Dismissive doctors

My name is Leaffouse. I’m 33 years old, living in New England. I am diagnosed with ASD, ADHD, PTSD, OCD, Vasculitis, POTS, MCAS and hyper-mobility. My previous doctors wouldn’t diagnose me with EDS but it’s highly possible. I’m also going through something neurological that is similar to MS or Early Onset Parkinson’s (symptoms of both so they need to do more in depth testing rather than just an MRI) that I need find a diagnosis for but all my tests come back “within range” and imaging I’m told is normal.

My neurologist, come to find out a PA, told me everything is in my head. It’s clearly not. The only doctor in my corner was my primary and we just moved out of state so I need to start all over! I was to be seen at Wake Forest but now I’m stuck starting over, waiting for referrals and praying I get a good doctor. They even misdiagnosed my vasculitis and told me my images were normal.

#Vasculitis #EhlersDanlosSyndrome #Hypermobility #MultipleSclerosis #ParkinsonsDisease

7 reactions 8 comments
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I’m new here!

Hi, my name is odderprod. I'm here because I have Lupus and Vasculitis which has put me in End Stage Kidney failure. I had one failed kidney transplant last year. Hoping to hear other people’s stories.

#MightyTogether #VasculitisSyndromesOfTheCentralAndPeripheralNervousSystems #ChronicKidneyDisease #Lupus

4 reactions 2 comments
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I’m new here!

Hi, my name is Ionna326. I'm here because of systemic problems relating to vasculitis and effects on the heart, mesentery and kidneys.

#MightyTogether #RelapsingPolychondritis #sjogrensvaculitis

5 reactions 2 comments
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Need a Rheumatologist that Specialize in Vasculitis

I am sure that I have Vasculitis but

I cant find a Dr to diagnose me or else need months waiting list for appt.

I have Lupus and Sjogrens.

I would go anywhere on the East coast.

Thank you

#GranulomatosisWithPolyangiitis

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Scared and sick and tired

Betrayed....
That's the word that comes into my mind, when I think about having
several chronic illnesses.
Betrayed by my own body. Having to fight just to do the "normal" things in life like
getting up, taking a shower, going to work etc.
Every time you think you've come to terms with the current status life throws
something new your way.
And there you are… Again standing before the next mountain they expect you to
climb.
In my case this mountain is named MPA (Microscopic Polyangiitis)
At the moment it's just a suspicion.
But I'm tired. Tired of getting a new diagnosis every other day. As if EDS, PTBS,
Autism, chronic Migraine blablabla isn't enough.
Tired of them expecting me just to take it. To put on that brave face and keep going
like it doesn't affect me.
Truth is: I am so scared right now.
And I don't know how to go on from here....
#DistractMe #CheckInWithMe #scared #EhlersDanlosSyndrome #Vasculitis

9 comments