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
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