#cidp

[redroses07]

The worst part about being chronically ill is constantly feeling like you are unworthy of love.

[shapedforfighting]

The hardest part of coming to terms with having an autoimmune disease for me has been recognizing and accepting that I can no longer do everything I want to do. Nor everything I may want to do in the future. I can't have it all anymore. I have to choose.

[coffee-n-bagels-comic-universe]

I know that people aren't here for my real life situation, but I'm back in hospital (a different and better hospital) for more Ivig treatment, I know the writing says 24/06/24 but the cannula was put in my hand yesterday

[cidpmemoir]

Wake up around 5am drenched in sweat. Literally peel my shirt off of me and grab a new one. Lay back down on a damp pillow, damp comforter, damp sheets. I can't wake my sleeping partner, so I just try to go back to sleep...but my skin is sticky, my hair is disgusting, matted, and sweaty.

With the covers off of me, I'm freezing. It's better with them on, but there is no way I'm able to go back to sleep under these circumstances.

That's unfortunate because waking up sweating is VERY exhausting for no reason at all.

If I get up, I need to shower. And showering is an even more exhausting activity. So I'm just laying here, trying to decide what to do.

There's no winning with chronic illness. I start my day like this most of my days. Waking up on the wrong side of the bed is a daily occurrence for people with chronic illness.

The crazy part is aside from writing this post, no one would know..this is such a normal part of my life I wouldn't even mention it to anyone.

[fandomangel]

I just wanted to let you guys know where I've been for the last 3 years. This video explains everything. I also want you all to know that I have missed you and want to start working on stuff again but it's going to take time.

That all being said I have released some new merch. It's some cool stuff if I do say so myself. (Though I might be a little biased.) I hope you all enjoy it as much as I enjoyed making them.

[oleander-teacup]

hey cidp gang. my dad was officially diagnosed after suspecting for several years just a few months ago and is having a really hard time with coming to terms with needing a mobility aid.

what would you suggest for easing someone into using a mobility aid? as someone else with autoimmune issues i use braces galore but i dont feel weird about using them because i know they help me to like. literally walk. so i dont exactly know where he's coming from here. any advice?

[redroses07]

yes. I do not want you to pity me because I am disabled. I’m a person just like you, I just need a little extra help sometimes.

Say it with me! Wheelchairs aren’t sad! Mobility aids aren’t sad! Mobility aids are instruments of freedom!

[ashashash822]

Last day of IVIG infusions. Two days in a row, every three weeks, for the last 3 years. I'm tired. Recently it doesn't seem to be doing what it used to for me. Moving on to Vygart Hytrulo, a steroid recently approved for CIDP patients. I'm excited, I'm nervous, I just really hope this helps better.

[leoandraphssoulmate]

Every damn time! Especially the ER! Even tho l clearly have 2 different autoimmune conditions!!!

[springstick]

A Kinda Ramble About Health

Sorry for not posting for a few days. I have been struggling with my immune condition a lot recently. I've been getting really bad tremors in my hands, and loss of motor function, and temporary paralysis in my right hand (probably from overuse / note taking). I have a hard time writing and typing. I'm working on getting appointments set up with my doctors, but it's a week before finals and my neurologist is 2 hours away. Does anyone who has CIDP have any advice?

[disabledsysboxes]

Autoimmune - 4

[redroses07]

The worst part about being chronically ill/ living with a rare disease, is I have to explain that I’m not in class cause I had an episode, fell on the floor, then couldn’t get out of bed.

[crinformativa-blog]

CCSS activa Centro de Información y Derivación de Pacientes para garantizar atención especializada

CR Informativa | redaccion@crinformativa.com San José, 28 de junio de 2024 – La Caja Costarricense de Seguro Social (CCSS) ha anunciado que activará el Centro de Información y Derivación de Pacientes (CIDP) este fin de semana. Esta medida busca garantizar la atención a los usuarios ante un aumento en las atenciones en los servicios de Emergencias y Urgencias de los establecimientos de salud, así…

[coffee-n-bagels-comic-universe]

God, what a journey. I have CIDP.

On the 8th of May I was told that my official diagnosis is 'CIDP' (Chronic Inflammatory Demyelinating Polyneuropathy) I have gone from the introverted but all-out goth willing to wear that blue dress into a hospital (first pic) to (with a fresh haircut) the dying to be out of the house, sill goth, geek (last pic)

I say this not to beg for sympathy but to say I'm officially disabled and finally at a comfortable point to say that, I am weird, I am Autistic, and I'm practically wheelchair-bound.

I am a rare case, most CIDP cases aren't in their early 20s with no prior illnesses before this happens to them, but I am lucky enough to live in the UK and have free healthcare, I can complain about wait times in A&E, or the slow way hospitals communicate, but I'm writing this to say that you should look out for yourself, cause you never know what will happen.

[cidpmemoir]

Through the PAN Foundation, I was approved for a grant for the vygart hytrulo!

That's all I know so far lol it's supposed to help pay for it, which makes me nervous that it's really expensive then 😅 hah we will see! But at least part of it is paid for.

[kghospital]

Guillain Barre Syndrome (GBS) - Best Neurology Hospital in Coimbatore