Crest

I have 4 autoimmune diseases. People don't understand what we go through. I am going for an infusion this Monday through Friday all day to open up my veins. I'm tired all the time. People don't understand. #scleraderma #Crest #raynods

#Scleroderma
#Gastroparesis #raynauds #Hypoxia #PVCs #Anemia . #pottssyndrome #EsphogusDismotility #GERD #hashimotos #Hypoglycemia #Migraines #ReactiveAirway #HiatalHernia #So MuchMore....= #autoimmunecringeworthy ... that's how I feel anymore.
Yet with still with so many saying I look "so great!!" on the outside (well meaning, of course,) it's a common thing said to me / people with an auto immune, Scleroderma, chronic illnesses.
But I find explaining myself now that my "problem list" is SO LONG that I almost feel like I AM the nightmare.
The problem.
It's cringe worthy.
And isolating.
And lately,
Anxiety producing, which is
something new.
I can't put my finger on the pulse of what I'm anxious "of" exactly, but the "feeling" is flat out horrible.
When I go to a specialist they want me to stay "in their lane" only = i.e. not discuss anything other than what they specialize in.... This becomes difficult when your disease affects so much (see list above) h
If I get told a new diagnosis, (like recently one of, #Gastroparesis ) after so many other diagnosis's, it wasn't so much surprsing or earth shattering as it was worrisome...
The conversation was short.
Will we ever talk about it again?
Is that it?
Do we move on?
Is it now another word on my list?
And I say that kindly as my Dr's are great. But you see what I mean?
"What now?"
He goes to another patient.
I have another Dr's appt.
Did that happen? Matter?
On the outside, I look exactly the same. Internally obviously "we" know the "drill"... I asked "is there a cure?" "no, no there is not".
But I get explaining this messy situation I am living or sharing it or talking about it to people would be probably odd.
But right now as I may be a #Auto ImmuneNightmare on the inside and appear ok on the outside. I'm actually feeling #Anxiety and #Uncertainty & I wonder about all the different diseases /diagnosis's progressions.
But I guess these #Thoughts come with the territory.
Thanks for listening.
@SamanthaGill