Polymyositis

I'm new here. Seeking some guidance I guess on how to handle grief and where to find some hope. I don't like to make excuses but I've been carrying on with my life like I refuse to acknowledge my diagnosis. I take the meds and might as well be taking pez. I have begun infusions recently. I am a workaholic and refuse to slow down because when I have time to think about where my body is headed depression sets in. Would rather keep busy to ignore everything until I officially give out #Polymyositis

Hi, my name is OBean. I'm here because I was recently diagnosed with connective tissue disease, scleroderma and polymyositis with institial lung disease.

#MightyTogether #Scleroderma

Hi, my name is MrsAE. I'm here because I spend most days on my bed resting and thought it might be nice to have similar people to communicate with.

#MightyTogether #RelapsingPolychondritis #Polymyositis

Hi, my name is CarryingOn. I’m new to The Mighty and look forward to sharing my story.

#MightyTogether #Lupus #Polymyositis #PapillaryThyroidCancer

#Polymyositis

Yes, you !

One thing, one Really Big LittleThing, that I said, starting as a child, was (when asked how I felt?)

(pick just one,)

"Oh,....
-not too bad
or:
-ok
-a little sore
-kind of tired
-having tummy trouble
a little sleepy,

And then, I always said, "and how are you"?
I turned it back.
(because having attention focused on me, gave me anxiety). Why?

My Momma had made it painfully clear, just how aggravated she was when I was sick or home from school. I was sick a lot, especially from 1st to 9th grade. Streph, EBS, Bronchitis, Allergies, Colds. Aches, sprains, broken bones. She also hated driving, and Drs., So I was usually treated by a phone call, and an RX for Amoxicillin.

I always cared more for others, and I really wanted to be happy, active, an asset, loved, appreciated.

But, my mistake was that of being afraid to push others away if I were to be negative, or honest, about how I was.

That little habit turned out to spite me, by making me "sound" stronger or healthier mentally and physically, than I really was.
People wanted to be released from having to care about it.

So, when I started needing those same people to hear me, to realize that I felt worse, or my condition was/is really serious, they found it hard to process.

All my years of saying, "I'm Okay", had Brainwashed them into refusing to think that I was not "Okay, or Just Fine, or Well Enough". So, Then, when I did limp, or crash, I felt like they saw me crying wolf! Poor Me!

My desire to make things easier for everyone else, cost me my family, and my nice life. Because for 25 years I've been increasingly deteriorating, but they don't have time, anymore, or compassion, or empathy, to see how much I truly need them.

Don't Sugarcoat your feelings. If they seem too sharp to share; If you can't get the right thoughts out, try writing them as letters, or using a journal that you could share, at times. Stick up for yourself!

And there may be times where you have to call your problem, an "8-9", instead of a "3-4", so they sit/get up or notice, you Really need help. You really Deserve it! So do I.
#EhlersDanlosSyndromeAwarenessMonth
#EhlersDanlosSyndrome
#ChronicPain
#Dermamyositis
#Polymyositis
#MixedConnectiveTissueDisor -ders
#Fibromyalgia
#sjogrens
#Anxiety

#RareDisease

I think one of the biggest injustices we face, as rare as we are, is being told to expect that our Primary Care Physician, the person in charge of "managing our health, tests, procedures, results, etc." will actually feel responsible for our progress, or even want to.
...."We' are going to be 50x more complicated than their average routine check-up! "We" aren't ever going to fit into that 15 minute slot that they have for us!!
"We" can't get to the bottom of our conditions, if they keep bailing out on us.

.... There needs to be another Specialty. Definitely not the Rheumatologist, who often knows a tenth of what we will.
There needs to be a Category of Interventional Physicians for Auto-Immune and Connective Tissue Disorders. Don't look away, but Yes, it would be like House and his team.
I chose a new PCP last September, an MD, a DO. Both, which she assured me made her uniquely more experienced to help someone like me. Her biography on line sounded great. I told her that I could help her learn more about these rare Syndromes, and she would become an invaluable member of our medical community!
... But, as I started to discuss me, and handed her (the most pertinent tests and documentation), my backstory of tests I had already gone through, she got that "Deer Doctor in My Headlights Look".
You know the look...the haughty ones will laugh in your face. They might even call a couple students in, to meet you or observe. The less experienced ones will realize that their bluff will be called. Whether by you, or the next Zebra.
... She nods with understanding.
.... She gives my files to the staff to copy.
.... She spends way more than my alloted time, typing every detail into my patient history.
I'm excited!! She's listened!!
She has me do a couple of those Yoga-ish arm to shoulder stretches before I leave, and promises to be in touch as soon as my very first labs come back.

But, when I next went to my Pt portal, her notes read, " Diana has a VERY COMPLEX CASE". I could feel her crawling under a rock to avoid me. All that hope I had, for just one more PCP who wanted to lead, or even just be on "Team Diane". *Poof* Gone.
I've just lost valuable time that I spent searching for this new Specialist, or lining up in the queue for months to get in to see them, having anxiety, IBS, and gritting my teeth as I walk into yet another new Drs office, for the same Damn result.
The negligence I feel, and their deficit in current, updated, relevant education, is terribly disheartening.
I know I will probably never get ahead of the curve of Western Medicine.

#EhlersDanlosSyndrome , #sjogrens Syndrome, #Polymyositis , #Dermatomyositis , #Fibromyalgia , #GAD , #MDD , #DDD , #RA , #oa , #AnkylosingSpondylitis , #mixedconnectivetissuedisease, #MCTD , #Rh -Disease, et al.