SLE Maybe - BS Yes

SLE (lupus) Maybe but for sure it is BS. Bull shit.

So the doctor has said based on blood tests and symptoms...I have some sort of Mixed Connective Tissue Disease. Lupus - Maybe, Rheumatoid Arthritis - maybe, Schleroderma -maybe, sjogrens - maybe. Or maybe a nasty combo of these. So it is yet undetermined. This is old news. I've been dealing with this for 3 years.

Now none of these are particularly terminal, none curable. Mostly managing symptoms and watching for more serious complications. SO YES I KNOW, I KNOW, I KNOW I need to count my blessings!!!!!

But Bull Shit...This is my post and I'm gonna complain and vent. For my way of life is in jeopardy!!

Yesterday I walked. I diligently put on my prescription strength sunscreen (no more skin cancer for me ya'll) to my face! I wore a hat! I put spf chap stick on my lips. I wore long sleeves and long pants. I was good!! During my walk I pushed up my sleeves as it started getting just a little hot.

After I got home I sat on my deck in the sunshine for 30 minutes with short sleeves. I reapplied sunscreen to my face and lips. Fast forward four hours later. My still white ass arms that match my white ass legs feel like someone is poking me with tiny needles. My lips are stinging and bright red. This lasts all night and continues today. It has subsided substantially but still there.

Now I have a big ass ganglion cyst on my wrist. Okay I am pissed!!! I deal with fatigue and joint pain every day and the occasional "itis" (inflammation) epilglottitis, uvulitis, pleuritis!

But BULL SHIT if I am giving up the sun! and beach vacations! and enjoying the outdoors! and gardening! and swimming! This just sucks!!! Big sucks.

I know I know I know...There are much worse things but really this stinks.

Maybe because I watched MS take everything she loved away from my mother I am freakin adamant that NO NO NO. This affliction will not take anything away from me. This is bull shit and fix it. And that is what I plan to tell my rheumatologist. FIX THIS because I am not going down without a big ass fight. I am not going down quietly! I will jump up and down screaming if I have to.

Okay I feel a little better now.

Thanks for listening.
Joytobe