Vasculitis

In waters thick with currents,
I swim through electric skies,
A peanut butter ocean,
Where each stroke is a disguise.

Nerve endings crackle like thunder,
Fatigue drapes its heavy shawl,
Like quicksand, it pulls me under,
In the depths where shadows crawl.

Anxiety thrums in my chest,
A heart wrapped tight in barbed wire,
As I fight against this unrest—
This endless chase of quelling fire.

Frustration lingers like a ghost,
In the hallways of my mind;
Hope feels scarce as I navigate—
In this maze that’s undefined.

Wellness, a distant horizon,
Promised lands I cannot see;
In a fog of pain I'm adrift—
Will I ever be truly free?

Each spark ignites a flame of doubt,
No solace found beneath the swell;
Yet still I strive to break about—
From this excruciating shell.

I'm trying to remind myself I'm blessed because of the hurricanes and all those poor people. But I'm frustrated. I have Polyarteritis nodosa (PAN) about to be homeless and have been reaching out for help and getting no where. 211 is by county. When your whole county doesn't have one homeless shelter and yes they can put me on lists for a place but up to a year waiting. The local churches say they only offer food, and told me to call 211. When everything is by county and trying to get to a bigger town that has a homeless shelters and resourses. They said they can't help until I get there. There's no more free phone programs here. I just wish my body could work. Not only do I miss working and being able but what does one do when there's no resources. I've shared gofund me on multiple platforms and nothing. I feel like nobody cares about me and idk what I did wrong... #Anxiety #BorderlinePersonalityDisorder #Depression #CheckInWithMe #ChronicIllness #Vasculitis

I have some sort of vasculitis -they're not sure what type. I was 'diagnosed' in 2015, I then moved to Wales and the NHS here is terrible. I mostly been on prednisolone for the last ten years. Recently I've been told my body has stopped producing its own steroids.
Every few years I ask what is happening, what my long time treatment plans are, what type of vasculitis I actually have. They put me on waiting lists for tests. This usually takes two years (not joking). When my ENT appointment swings by it's usually when I'm not experiencing nasal crusting and nose bleeds. My lung function tests come back normal. I've never had a biopsy of my nose/sinus/lungs/abdominal areas. These are the areas I have the most problems.
I've not been feeling too bad this year, the usual exhaustion, low level muscle/joint pain, diarrhea & the constipation. Seriously I have one then the other for a week or two at a time.
This morning woke up and my sinuses/cheekbones/eye sockets are aching. I can feel that blood clots are waiting to push through - sounds weird but I swear I can feel when it's going to happen. I'm so tired and achy. And fed up.
The last three yearly visits I've had with my rheumatologist they've basically said you're not going to die, we don't know what the main cause is, but it's your quality of life that's the problem, we're not concerned about your major organs.
I just feel like I'm not listened to. That the fact I've gone from being a capable, independent energetic woman to someone who feels like all she does is moan and nap is nothing and doesn't matter. #autoimmune #Vasculitis #ChronicPain

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

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

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

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."

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