When you’re in pain & you can’t get help, you feel like you don’t matter.

Several weeks ago, my calves started to itch. I began to have small patches of skin that were hard and itchy. I didn’t think a ton about it. I just assumed it was my Sclero affecting my skin.

Then the pain began. These patches of skin went into a full on flare. My legs were on fire!! The pain I can not describe. I was scratching so bad at night that my legs would bleed. I started wearing mittens at night.

The dry patches stay all the time. But the flaring comes & goes. I’m convinced it’s a reaction to something. But what?!!!! I’ve checked everything, I’m keeping lists of everything that may be setting it off. I can find no commonality before each flare.

I’m still waiting to get into a new primary care doctor after mine retired. My Rheumatologist also left her office & I have an appointment in February to see the doctor covering her patients. So what about right now? What do I do? If I go the the ER or a walk-in clinic, chances are good they will not know about my illness. How can they possibly diagnose me? They can’t. It’ll be the same as always, they might treat my symptoms, but in the end they’ll tell me I need to see my primary doctor. I do not want to go through this again.

Flares come out of no where.

I’m really trying to focus on being hopeful & optimistic about getting new doctors. Changing doctors is a huge trigger for my PTSD. It’s extremely stressful to go through this process.

I feel like my doctors are letting me slip through the cracks again. But the truth is, I’m letting it happen. I need to gather the strength to be proactive and get my legs looked at.

PTSD & anxiety are paralyzing.

5 thoughts on “WHO YOU GONNA CALL”

    1. Agreed. What’s even more frustrating is since I have had so many complex procedures, it’s like I’m a show and tell project. In fact, I have had to educate interns about my procedures or what the initials EDS mean and they have MD next to their name.


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