Von Willebrand Disease

Hi, my name is janchors. I'm here because

#MightyTogether #PosturalOrthostaticTachycardiaSyndrome #MastCellActivationDisorder #VonWillebrandDisease

Hi, my name is bentleyplaysviolin. I'm looking for a community to relate with, and learn to deal with the mental challenges of chronic pain

#MightyTogether #BipolarDisorder #AutismSpectrumDisorder #OCD #ehlers-DanlosSyndrome #ADHD #VonWillebrandDisease #IronDeficiencyAnemia #SocialAnxiety #HipDysplasia

My blood pressure has been skyrocketing recently and so my doctors were coming to possible consensus that it was related to my lupus. My cardiologist set me up to do an echocardiogram which I've had a few times before. Thinking it would be normal then NOPE. Some kind of spot which could be an artifact or it could be a cardiac noncancerous tumor called a myxoma. 😳What in the ever living? 😰I now need to get an MRI to confirm. Please pray for me. Im really trying to distract myself but its hard. If its a myxoma it literally means heart surgery. 😭

Hey everyone,

I need to go though another round of medical care. We moved and I have specialists in my known diseases I need to get established with, and I have new and alarming symptoms which may have serious causes that need to be evaluated.

Even though I'm being treated well currently by my medical providers, and have real diagnoses for the symptoms that were originally called psychosomatic, I'm having a lot of trouble trusting and not having panic attacks. I'm worried any little thing I say is going to make them change their minds and not help me because it's "psychosomatic", and I desperately want and need help right now. I don't want to keep being this sick, and if the knots can be untied slowly and in the right order, Lord willing perhaps I don't have to be this sick.

So how do I do it? How do I get through medical care without losing my mind?

Anyone have a good pep talk? :-) ❤️

#RareDisease #Disability #LivingWithPOTS #PsoriaticArthritis #PeriodicParalysis #Anxiety #PanicDisorder #CPTSD #AntiphospholipidSyndrome #Dysautonomia #MalDeDebarquementSyndrome #OvarianCyst #VonWillebrandDisease #CheckInWithMe

I just had my first dose of Vonvendi. No side effects so far. Normally, I had been using Humate-P. I will be taking my second dose tomorrow. Anyone have any comments or experiences to share?

#Lupus

The only thing I have been terrified of my whole life, is being alone. Here I am 43 yrs old, no life, unsure how to rebuild my life, (I don't really want to🤔), & all alone. 'Scared' doesn't even begin to describe this feeling. It's agony! 😟😞 #fridaynightthinking #overthinking #Foreveralone #BipolarDisorder #PTSD #Recovery #VonWillebrandDisease #Fear #dreadful #Shame #Guilt #Lovelost

Hi all!

I want to start by saying I love this website, the people involved- this is the most inspiring community to be apart of and I’m trying to come out of my shell so I can deal with the reality of my situation.
I was diagnosed with Lupus and also Von Willebrands Disease Type 2, and in the midst of finding a diagnosis (lots of drs, lots of disappointments as many of you can relate lol), was placed on VERY high dose long term steroid therapy. As many of you know from personal experience, I gained about 80lbs and had to fight for my life to taper down- I am SO CLOSE to being fully off!
Along with dealing with the chronic illness itself and the rapid constantly fluctuations of weight gain and loss, I was diagnosed with Avascular Necrosis in both of my hips. October of last year, I had my first total hip replacement, followed by my 2nd in December. After rehabing from that, I tried going back to work only to realize the Necrosis had spread to my right shoulder, leading to another replacement this past August. At my last visit/recheck, I now am aware I am going to need my left shoulder replaced due to the Necrosis spreading again. Within one year, I will have had 4 total joint replacements. I am not asking for pity, but I am feeling like an animal, or like a robot and feel like my life has been robbed of me. I am usually a very upbeat person, but this is really testing me to my core. Not to mention, not being able to work, to do normal things like going out, etc has been very rough. I have lost almost all of my friends, I never received one single text of a -good luck! Or how are u?- I am not asking for bouquets of roses here people but after knowing those people for 8+ years, I was hoping for more contact. I got so sick of being the one reaching out all the time that I gave up, and realized I was the only one putting the work in to begin with. That really, really hurt me.
I am trying so hard to move on with my life and surround myself with more positive, supportive people but it is very hard when I have so many restrictions and can’t socialize all too often. I just feel like I am losing touch with the person I thought I was, and it’s freaking me out. I just turned 30, and my life has taken a turn in a direction I was never expecting. (Never say never, I know :p ) Am I losing my mind? Is it normal to feel this way? Looking for any kind of shared experiences, relatable or not, any kind of inspiration or how others have overcome dealing with similar issues (chronic illness, surgeries, losing friends, coping in general, getting people to understand without sounding like a complainer...anything would be appreciated). Thanks to anyone who took the time to read this novel, and sending all of my love and good vibes to all of my fellow mighty fighters out there!! #ChronicIllness #Lupus #VonWillebrandDisease #Jointreplacement #SpoonieProblems