I had a different post prepared today to drum up some excitement about April being Sarcoidosis Awareness month.
And then last night I went into a Sarcoidosis flare which carried on into TODAY. So perhaps, it’s not for me to prepare a “feel good” post about Sarcoidosis. Perhaps today, I can tell you what it is truly like living with the disease.
To sum it up, it’s like waiting for someone to ambush you from the inside out. You don’t know when and where it is going to strike, you just know it will strike, you need to be prepared for it, and you are going down for a couple of days.
No two cases are exactly alike, it varies by the individual.
What do my flares look and feel like? I usually lose mobility in my legs first and then my hands. It becomes really hard to stand and then unbearable to sit. My back and my joints have shooting pains everywhere. I’m sitting in silence hoping it doesn’t go on attack. When my Sarcoidosis goes on attack, it goes for organs. My larynx was first. I now have Sarcoidosis in my mouth, throat and lungs. My doctors are scrambling to prevent a super flare hitting my lungs.
It’s not pretty. … and this is all happening on the inside. On the outside, I look fine. … until someone finds me with my head down on my desk in my cubicle or I’m pissed off and wailing in my car because I need to push through the pain like a solider. — mainly because I am a Mom and I have sh** to do.
So this is not the most jovial post in the world about Sarcoidosis, but it is very honest. I am trying to raise money for the KICK IN TO STOP SARCOIDOSIS campaign because I don’t want other people to experience what I’ve experienced. I’m not naive enough to think they may find a cure, but I am hell bent to help researchers find a away to improve care, treatment and management of this disease.
… so if you are want to help me via the KISS fundraising campaign, that would be awesome.
Do use the link below to donate or if you want to support by sharing the hell out of my KISS page, that will work too.
Thanks for reading this long ass post and let’s kick Sarcoidosis’ ass – because well… it needs its ass kicked because it’s kicking mine and I barely have any ass, already. Bwwwwwwwwwwwwwwah. Smile. Trying to lighten the mood.