Posts Tagged Test Results
Along with a mild flare and a new fun symptom (more on that in a minute), I got a call from the nurse saying that my blood tests flagged my liver function panels as high. For me this means dropping down to four doses of methotrexate per week instead of six and following up with another blood test in a month. This scares me, and is especially bad news to get on a day when your symptoms feel worse than they have in awhile. I don’t want to mess with my meds if their helping. Will my symptoms flare? Will it slow remission progress? So many questions.
Also, there’s this sense of I coulda done more to help my liver while it’s working so hard to process these crazy chemo drugs. I haven’t 100 percent abstained from alcohol (my rheumy said five drinks per week was fine) for example. For those of you on mtx, did you cut alcohol completely? Anything else you’re doing to help your liver?
And then there’s this weird feeling I’ve had all day as if the blood in my arms is burning. Like my arms are on fire from the inside out, especially by my elbows. Has anyone experienced anything like this? Is it a vitamin deficiency, med side effect or RA side effect? Or maybe I’m going crazy. I’ll be asking my rheumy tomorrow, so I’ll let you know what he says.
Despite the burning and flare symptoms, I made myself lift some weights and do some yoga. The distraction was great at least, but now it’s back to burning.
I finally had my appointment with my rheumatologist today after a week of going through potential outcomes. I brought my mom with me to have another pair of ears and the support.
The diagnosis was immediate: “You have rheumatoid arthritis.”
I can’t say it didn’t suck to hear it like that. I’d expected a little bit of mystery, deliberation, maybe a “you’re OK.” But I also can’t say I was surprised. I nodded as he went over the reasons why he was sure – positive for rheumatoid factor and anti CCP, bone erosions, clear inflammation.
Then he asked questions that shed a light on ALL of the symptoms I’d been feeling but hadn’t linked to my “sports injury.” Have I been tired? Down? Depressed? Experienced insomnia? Anxiety? Stomach issues? Yes. Yes. Yes. Yes, yes and yes. Majorly. Dry eyes and mouth? No (something I don’t have, yeah!).
I walked away from the appointment with a diagnosis, a plan and an odd sense of hope and relief. My rheumy believes we can get this into “remission” in six months. My rheumy says I’ll be able to have a family in the future if I choose to. My rheumy says that we’ll minimize permanent damages. That there are a lot of good drug options.
So, of course I left the appointment sad, with a million additional questions and overwhelmed at my new drug plan – A cancer drug? Giving myself injectables? But I was also relieved to be doing something and to have a name to put toward everything I’d been feeling.
I promptly filled my prescription for methotrexate, prednisone and folic acid and started the process for getting insurance approval for Enbrel.
I went to happy hour with my mom and close friend, nervously going over the prescription info and bringing my friend up-to-date.
And then, with a ton of trepidation (Is this severe of a treatment really necessary? What about the side effects? Will it make a difference?), I popped those six itty-bitty MTX pills and began my new life. A new life on drugs, but also a new life on the pathway to some sort of relief and recovery.
I had one week before my rheumatologist appointment, meaning one week to Google every related illness and RA horror story known to man. Cancer? Lupus? Rheumatoid Arthritis? Something worse? Permanent disability, 10-15 years off your life, systemic disease spreading, scary drugs, high medical bills. I read it all.
It was probably one of the scariest weeks of my life. I cried myself to sleep and came to terms with the worst case scenarios. High medical bills? I was about to turn 29 and loved my apartment, but I could move back home with my parents to save money. Disability? This one gave me shivers, but I could deal. I could work from home some days and adapt as necessary. Not being able to have children? This one sucked. It was a hard one to think about, but I even made peace with perhaps never having children of my own.
On Thursday, one day before my appointment, I got the call from the lab. “We got your results, and based on your blood tests, which show you’ve tested high for Rheumatoid Factor and Anti-CCP, we believe you have Rheumatoid Arthritis.”
“Shit,” I thought. “Um, OK, um…Thanks,” I said. I’d read, I’d mentally prepared myself for a range of diseases and this one wasn’t as bad as some of the possibilities, but it still stung. It still ripped me apart and made me wonder, “Now what?”
Apparently “now what” is spending the night at my parents like a kid and getting all my tears out, so that I wouldn’t cry at my appointment the next day. I was DETERMINED not to cry at the doctor’s. And, guess what? I didn’t. But that appointment’s the topic for another blog.