I have Medical PTSD related to #ITP ,I know that I should be relived and happy to be in my sixth year of remission when other are not, but the anniversary of my diagnosis is coming up and everything that I've worked to mask, is coming up again! worst of all is my memory pain... I don't know what to do! has anyone dealt with any of this?
Sent from app I’m flying cross country this coming June and I have no idea how I’m going to do things like, get through tsa in a wheelchair, sit for 4 1/2 straight, and get seating with my wheelchair... any tips would be super helpful!
#TravelTips #AirTravel #Travel #Fibromyalgia #RareBloodDisorder #AutoimmuneDisorder #ImmuneThrombocytopenia #MuscularDystrophy
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As if getting two removed wasn’t bad enough, I have another about the size of a grape. Lucky me! #ImmuneThrombocytopenia
It is Sunday afternoon & it has started to rain. Anybody who suffers from chronic pain will understand what it is like to hurt when the weather is cold, damp or both.
Diespite taking my painkillers I am going to have to take extra meds out with me just to get through what we are planning to do today & hope nobody thinks they’re anything illegal which I have been accused of in the past until i showed the tablet packet.
Do I like living with constant pain i certainly do not & yes there is days were I am in tears because I hurt all over & meds aren’t helping.
Now to the root of the prom lem if my drs i the past had of followed up on the ANA indicators in my blood work they’d have found i had lupus (SLE) a lot sooner & they could’ve put me on the Hydroxychloroquine years ago yet because nobody did it has attacked all my body.
What does that mean? Well my liver & spleen started to attack my red blood platelets which was caused by my immune system, i had to have my bone marrow tested to see what exactly it was that i had as it turned out i had Immune Thrombocytopenia Purpura which saw my platelet levels at dangerously low counts the lowest i ever was 0.000 yes that correct.
Drs decided after this episode i needed to have spleen removed which left me with NO immune system.
The lupus has also caused osteoarthritis in all my joints my knees are affected the worse as I’ve already had my right knee replaced 3 years ago & now heading towards my left knee being replaced but until i lose weight which i am doing.
Now the hardest part of having SLE is the relapses which hit with no warning & they cause me to sleep for anywhere between 18-22 hours a day especially when i am ill, i can get sick within 20 minutes of the first symptoms.
Life is a constant battle of staying both alive & well which touch wood i am managing to do but i know one day it’ll kill me until then i keep fighting on.
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