I hope everyone has been doing well and enjoying their “fall” even though most of us are still having hot weather!
The past two months have been a hot mess with me, but on a new level. On September 20th, I turned 25…which was an event that really hit home for me. I first got diagnosed with Crohns when I was 15 & nothing was the same after that. It’s like my life just froze there and everything else around me moves and goes on and changes, but I don’t.
I’ve been trying to take my life back from my health ever since day one and I haven’t been successful. I’ve tried to have a job and then something new would come up. I’d try again and this time try some “work from home” type things and my fatigue would be too bad to even function. I barely get Acting stuff these days, which was basically the only time I felt alive and functional…so that’s great. I don’t get calls to babysit, nanny or do any assistant work anymore and if I apply to jobs, I won’t hear back. All of this COMEPLETLY not by my choice or because I don’t want to.
It’s literally like I’m just meant to stay in my room and waste away for the rest of my life. I’m saying that because all of my efforts for that to not be the case have been massively unsuccessful.
These days, I’m just dealing with that reality and Doctors once again telling me that “they aren’t sure what’s causing my symptoms and blood work results” and another referral to a rheumatologist.
The suspicion was lupus because of my hair loss, light sensitivity, rashes, crazy fatigue, joint pain, urinalysis and a spoonful of other things. So, now I’ve gotta wait an unspecified amount of time to see this rheumatologist, who may or may not even have anything to offer me for answers or treatment. 🤷🏾♀️ Story of my life.
I spent 3 years at Cleveland Clinic for most of the doctors to tell me it wasn’t a GI/ was GI problem. Had my colon removed. Started having symptoms again and everyone turned their backs to me and said “idk” or “it’s in your head”. I came back to Tennessee and got on 3 different infusions and Methotrexate, been on them for 6 months, but as of 10/4/17, all of my inflammatory markers are sky high and no one seems to know why..plus the new symptoms.
Like come on!!!!!!!!!
Then, apparently, there’s nothing on the market to offer me to at least have energy to function and do stuff??!
That’s 100% the worst part about this whole thing. Having so much you want to do and accomplish and so many abilities, but don’t have the energy to do it. This is the perfect life for someone who’s lazy and doesn’t want to do anything or be anything in life. Not for someone with goals and ambitions who’s worth comes from career success and life accomplishments.
I want my own house, my own cars, my own career and freedom.
I’m living inside my own personal hell and I haven’t been let out. God says “the truth will set you free” and I would love to start getting some truth on what’s really going on with me, instead of “idk” from the Doctors.
Every aspect of my life shouldn’t be this difficult, but it purposely is. If I am a threat while on this earth, just imagine me when I am no longer strapped down here. You can break my body and break my mind, but you’ll never break my spirit and soul.