Updated: Jun 29, 2019
It’s been a long time..I shouldn’t have left you…without a dope beat to step to. #Jammin
Ya’ll know Aaliyah songs are my jam…but this aint what we came here for now is it?
That’s what I’ve been diagnoses with. I wish I could tell you a whole lot about it but I can’t. It’s pretty darn rare. I’m telling you…google that shit…I’ll wait!
Ahhh I see you’re back.
Welcome Welcome…you aint learn nothing did you. I already know. It’s ok. WebMD ran you in a circle. It’s like you went to Google and Ask Jeeves showed up like “Hey! What can I do ya for?”. You know there isn’t much when WebMD is like “why you ask me for?”
Anyway…if you did read some. There are like only a few HUNDRED of us in the US. YES HUNDRED. Like…whens the last time something was measured in hundreds…like son.
This is why I’m the Doctor’s pet. These fools like Ebola…EVERYONE HAS EBOLA…she has FM. We NEVER see this. I swear one doctor (before the diagnosis) was jumping around with excitement like this:
Anyway, how does this affect me. Well I suddenly had asthma around my senior year in college/1st year of grad school. BUT NOPE! It was this disease process beginning to block off my air way and presenting itself like wheezing. Doctors hear wheezing…and you have asthma. YOU GET AN INHALER. YOU GET AN INHALER. EVERYBODY GETS INHALERS!!
Well, luckily and unluckily, this didn’t fully block off my airway…it decided my arteries coming from my right lung looked like a memory foam pillow. So the mass that was building decided to rest on over there. So, as my “asthma” was getting worse, it was because the oxygenated blood from the right side of my lung was slowly being cut off. How I’m supposed to breathe with no air…WITH SUPPLEMENTAL OXYGEN…DUH!
At this point, those arteries served their purpose as memory foam pillows and have no further recollection of when they used to allow oxygenated blood to flow through. They are closed for business. No one lives there. Go home Roger!
So..at this point…since I’m young and OTHERWISE pretty healthy…my TEAMS of Doctors are looking into what the next steps surgically will be. Speaking of teams…I have a Pulmonary team, a Cardiac Team, and a Pediatric Cardiac Team. (I know I’m not a child but the pediatric team had the most experience w/ what i needed lol)
All my Doctors are great…I trust them. Also, they very much listen to me and accommodate me. I appreciate that. I’m pretty sure I’m leaving stuff out.
OOOOH the rough symptom that led me to the hospital in October that I didn’t explain. I still don’t want to go into too much detail for those who can’t handle it…but it was hemoptysis. WebMD will redeem itself.
While it was an unfortunate symptom (which I’d had before but not as severe…yall see what I been dealing with) it was the smoking gun that got me the CORRECT diagnosis finally.
Anyway…if you have more questions…let me know. Also, respect my right to roll my eyes and say “IDK” either because I dont know or because sometimes dealing with a chronic illness is a bitch and I don’t feel like answering questions about why my life is now flip turned upside down. But…ask anyway because I care that you care. No seriously…I don’t have rabies.
HOW’S THAT FOR A SILVER LINING!