“We Have a Different Diagnosis for You”

I’m 29 as I write this and I’ve had Scleroderma, an autoimmune disorder that includes hardening of the skin, since I was about 12 although not diagnosed until 13.  I recently had my usual check-up at my rheumatologist’s office where they did some blood work and found that my liver enzymes were significantly elevated.  They sent me for more specific blood work and even had to send one test to the Rheumatology Diagnostics Lab in California.

I just got a phone call this morning telling me they have a different diagnosis for me and I need new medications. They want me to get in within a week because the medication takes 12-15 weeks to start being effective.  I don’t know what to think.  Was I misdiagnosed for 16 years?  Or maybe this is in addition to the Scleroderma?  And what in the hell do I have now?

Admittedly, I haven’t been able to catch a break from pain (I’ve been trying to work out more).  First it was three flares ups of the Scleroderma, that’s supposed to be in remission, and then it was Bursitis in my shoulder.  Then I broke my leg tripping over a suitcase in the dark.  Then I had some extreme leg pain shoot from my hip and now my foot feels like I tore a muscle near my ankle.  I’m hoping this “new diagnosis” can explain all of this.  That’s the only good I see coming from my upcoming visit.

I’m really not up for starting the process of treatment again.  It took ten years to get my Scleroderma under control.  Just thinking about it is exhausting.  Will I be on these new medications for a long time, or maybe for the rest of my life?  Is my life even going to last much longer?  Is there a possibility of remission with this one?

I want answers and I want them now, but apparently, “it’s too complicated to discuss over the phone.”  Bullshit.  Just give me the name of something so I can be prepared now instead of worrying for a week.  I’m fucking scared.


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