F.U.C.K. MCTD

As I posted earlier, my lab results came back, and they don’t look very good. The only good ‘thing’ about them, are the ‘normal’ CBC, liver, and kidney panels. I was a bit panicked, so I called his office and left a message with the nurse. When, I spoke to my Rheumatologist and he decided to increase my Cellcept by another 500mg, so I’m on 2000mg daily [as of tomorrow]. He wants to recheck my levels in a month and adjust the dosage if needed. Cellcept maxes out at 3000mg, so I only 2 more increases before we start talking about other, presumably more powerful, chemotherapy medication. He said that there were a few other medications we can try if Cellcept stops working. He left out the way those medications are administered. If I stop responding to this, that means I’d have gone through 2/3 major chemotherapy drugs used for Lupus. We’ve talked about IV chemotherapy being the last resort, because I will develop cancer and I’m not sure my body could handle that.

He said not to worry about my elevated C3; I halfway trust him. He’s always minimalized and dismissed lab results and symptoms. From the research I gathered, having an elevated C3 is not good. What’s odd is that, it’s very common for someone with an autoimmune disease to have low C3 & C4, which, according to my Rheumy, indicates inflammation. So, my inflammation marker (CRP) is nearly 3x the value as the end ‘normal’ range and my C3 is 33 ‘points’ above the end value of the ‘normal’ range…and I’m told not to worry. He went as far to say that my CRP was ‘slightly’ elevated. No motherfucker, my last set of labs from August indicated a ‘slightly’ elevated CRP level (6.1 with ‘normal’ being 0.0-4.9). 13 when the max normal’ value is 4.9 IS NOT ‘slightly’ elevated, it’s fucking elevated. That’s the shit that pisses me off about him. I get that he doesn’t want me to worry, but minimalizing things only angers me. And I’m not exactly pleasant when I’m angry. Before the phone call ended, I asked if I still needed to come in on the 4th and he said yes. Super.

I decided to go through every Rheumatological tests I’ve had since 2014. I also went through any labs concerning my liver or kidneys. I made a little spreadsheet on paper, so I could see what’s been abnormal, by how much, and when. I did this for a solid 2 hrs. So, here’s what I found out: My ANA has been both positive and negative since 2014, with the most recent test [Dec 17’] being positive. I’ve never tested positive for Rheumatoid Arthritis or any of singular components of MCTD (Systemic Lupus Erythematosus, Rheumatoid Arthritis, Polymyostisis, and Scleroderma). My kidney and liver function are both normal and abnormal and they don’t show a distinct pattern, so I haven’t got a clue why this is happening. The biggest find is seeing how my disease has progressed [based on CRP levels] in the last 4 years. The numbers get higher every year, my May lab work marked my highest level to date; 15.10 (with ‘normal’ being 0.0-4.9). This month’s results mark the 2nd highest number since 2014. I’ve had nearly 20 CRP lab work results, spanning 2014-2018 and I’ve only had 3 normal level results. 3, in 4 fucking years. It’s alarming to have this information in front of you. I’m at a 100% accuracy when it comes to detecting if my levels will show up abnormal or not.

Then I got the results of my echo. Good news is, no pulmonary hypertension. Confusing news, I have ‘trivial’ tricuspid regurgitation and pulmonic regurgitation. I’ve done some research and I’m finding conflicting information. Some say that almost everyone will experience those things and it’s not a big deal. Others say that those are essentially a precursor for major heart problems. So, naturally I’m stressing myself out because I can’t talk to my doctor until Monday. I should get the results of my 24 hr monitor at some point next week. I have a lot of palpitations yesterday which sucked, but at least they’re documented and can go on from there. Nothing left to do but wait.

I want to curl up in bed and shut out the world until this bullshit ends, which is stupid because it NEVER ENDS. As morbid as it may sound, sometimes I wish that my body would give out already. I tired of getting lab work done. I’m tired of choking on the medication I take 4 times a day. I’m tired of doctors’ visits. And I’m REALLY fucking tired of this stupid diseases’ desire to progress and wreak havoc. I’m just…tired.

I’ll update next week once I’ve spoken to my Cardiologist and have my appointments with my Rheumatologist and ENT. oh, and one more thing…FUCK MCTD!

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