Same Shit, Different Year

So, it’s been a little bit since I’ve written (again)…had quite a bit going on. First off, I turned the big 3-0 a little more than a week ago, which was less traumatic than I thought it would be. The day itself was mundane and lack luster because my “real” birthday present has yet to arrive. I booked myself a solo vacation to Las Vegas to visit friends and get a break from life. Yaaaayyyy for my first vacation in years! Aside from my much-anticipated vacation, 2017 doesn’t appear to like me any more than 2016 did.

I had my first ER visit of the year this past Saturday. Twice now, I’ve come out of the shower with my left forearm red and swollen. The first time it happened, I assumed that maybe I had just over worked it somehow but this time, (Friday night) I got worried because the swelling was accompanied by shortness of breath and chest pain. I thought maybe it was just my body telling me to relax and I figured it would sort itself out by the morning. Nope. Nothing has changed when I woke up Saturday and by late morning, the shortness of breath and the pain in my arm had gotten worse so I called my PCP who told me to go to the ER. I’ve been in the ER so much the past 8 months or so that I don’t get bothered by it much. Fast forward to getting into the room (which was quicker than normal due to my symptoms) and right off the bat I’m getting hooked up to the EKG machine. Now, I’m thinking “oh shit”. With MCTD, cardiovascular issues are very common and end up being what kills people with the disorder. Time to silently panic. EKG comes back normal and in comes the doctor. I explained my symptoms, their onset, and gave him an overview of what MCTD is. I wanted to kick him in the baby maker when he had the audacity to ask me how I knew I had the disease. Ummm…maybe because I was diagnosed by a specialist? Idiot. Anyway, doc says he’s going to have my blood drawn so he can do a test that will determine if I have a blood clot. In the meantime, they added on a chest x-ray to further rule out anything serious. Mind you, nobody has checked out my arm itself or addressed the fact that I was in a good amount of pain. Of course, the tests came back negative for a blood clot or any cardiac issue; great…so why is my arm swelled and why am I having these other symptoms? The doctor tells me there’s nothing they can do and to take it easy and call my Rheumatologist on Monday. Seriously?! This visit is going to cost me AT LEAST a $1000.00 and you tell me to call my doctor and “take it easy”?! It took everything in me not to go full Sicilian on him.

Fast forward again to Monday; I call Rheumatologist #1 and tell his office about my pleasant ER visit and yada yada. Now, because of prior experiences with him and his office, I was fully expecting him to either tell me that it was nothing or to throw some prescription at me and call it a day. Nope. He wanted to see me as soon as possible. That’s when the worry kicked back in. Now mind you, this is the guy who when I called him after I first started using Gabapentin and told him I was having what turned out to be side effects of the medication, told me that it was anxiety. So, for him to want me to come in the next day was a shock. My appointment was this afternoon and I’m still unable to process everything. We talked about the ER visit, what Rheumatologist #2 said and did at my visit with her, and what’s been going on with my existing symptoms. I’m usually reserved with my doctors (shocker, I know) but I laid it all out on the table with him. I basically just said that I was tired of being passed around from doctor to doctor because nobody knows why my disease has progressed so quickly and that I wanted answers and my life back. He was much more receptive and understanding than I had thought (can you tell I make a lot of assumptions?). He explained that there isn’t really any way to know why my disease is so “aggressive” as he stated. We went over medication options and I am once again going back on immunosuppressant’s; Methotrexate this time, not Imuran. I’m also on Folic Acid to compensate for the loss the Methotrexate may cause, as well as Meloxicam which will (hopefully) help with the pain and swelling. This now puts my daily medication count at 8 (not including my beloved Ativan). Yippie!

That wasn’t the conclusion of the visit…I asked what the next step would be if the immunosuppressant didn’t work; chemotherapy. Chemo…as in chemo, chemo, cancer chemo????? I shouldn’t have asked. I start taking the Methotrexate tomorrow, so I’ll provide updates on how the new medication is or isn’t working.

*Forgot to mention that Rheumatologist #1 is also testing me for 2 other disorders, one of them being Rheumatoid Arthritis. Had the blood work done today, just need to get the hand x-rays he requested, and we’ll see what the results say*

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