4:53 p.m. - 2008-09-08
At the Crossroads of Fucked and Fucked Harder.
Yo. Wow. Lots to say, hard to say most of them. I really and truly do want to keep a consistent diary though and I've been mad at myself for these serious lapses, so I hope I'm better about it this time. The blogosphere can be a wonderful place to purge the crapola of your daily life, but if you're me, seeing it in black and white can make it too real to handle. Especially when daily life seems to be a sinkhole in which I'm slowly but surely going down.
I guess I'll do my fun list form to document some of the bigger moments since I've last purged. I definitely can't do it all today, but if I am keeping up my resolve to be a constant blogger, I should catch up by a few more entries. I love lists. They can turn the incomprehensible into something tolerable. Breaking down a huge pain bit by bit until it's just a bunch of little things that aren't so bad when you split them up.
1) I've been diagnosed with Rheumatoid Arthritis by Dr. K. (Description of the disease appears about 3 entries ago, I think).
2) The fever that I complained and joked about last summer? Still have it. All day every day for the last year and four months. It's part of the RA diagnosis. Lately I'm thrilled if it's been the 100 or 100.3 that it averaged last summer. This summer it's been over 101 almost every day. Sometimes my face feels like it's going to spontaneously combust.
3) For the RA, I was first put on steroids in November, which did help quickly with some of the pain and it reduced the fever somewhat. But you can't be on steroids long-term. The long-term solution has been a drug called Methotrexate. It's very toxic and works by stopping new-cells from growing or something. Methotrexate is also given to cancer patients to kill their cancer cells. This can pretty much tell you how toxic it is. I've lost between 1/3 and 1/2 of my hair from it. In England, the pharmacists handle this medicine with gloves and dispense it to the patients in bio-hazard bags. I am not allowed to throw away or flush any extra pills because it could endanger the population. Instead, I'm supposed to bring any extras back to the pharmacy so they can get rid of it in their hazardous waste baskets. And this is the medicine I am told to take eight tablets of, one a week, for the rest of my life.
I'm supposed to be very careful to not get cut, bruised, or sick because my immune system is now suppressed from the Metho. I won't be able to heal like I used to.
My brother-in-law, who is a medical student, told me that Metho is sometimes prescribed as an emergency contraceptive in a one time only dose. As in, it prevents a fetus from growing because it's killing new cells and such. So you may have guessed, that means no babies for me. More on that another day.
I'm supposed to take Metho once a week before bedtime, and plan to do nothing but be sick the next day. (Doc's words, not mine.) I take them on Sunday night, just before bed. We've learned that the worst reactions are between hours four and ten after taking it. So before I take it now, I take sleeping pills so that I am mostly unconscious for the worst of it. The worst of it is feeling like you have the flu (vomiting, shaking, aching, chills) - and that will be a weekly event. FOREVER.
We call them "Metho-Mondays" now, referring to the day after when I am very sick. Erik takes care of me so sweetly and without fail or pause. Last night, when I had to take it, the sleeping pills seemed to fail at about 3 AM. I was whimpering and rocking in bed, but I was really trying to be quiet, because he had to get up in 2 hours. But he immediately tuned in to me, even though he normally could conceivably sleep through a mariachi band playing next to him. He immediately got me ginger ale, more medicine to help me fall back asleep, and rubbed my back while I cried.
4) I have to try to convince myself that suffering the side effects is worth it. Yet while some of the disabilitating stiffness and more excruciating pain has subsided by about 50%, it's not been good enough. And the fever has remained, even risen since starting the medicine. So in late June, Dr. K. told me he wants me to go on a drug called Remicaid, which is for people with moderate to severe RA. It is taken in conjunction with the Metho, unfortunately, not in place of.
Remicaid is given in an IV drip. The first treatment would take at least 2 hours at the doctor's office, in a room with a bunch of other people simultaneously being infused. Then the second treatment would be 2 weeks later, the third a month later. And the maintenance treatment would be 2 hour infusions every 8 weeks-- again, for probably the rest of my life.
5) Decisions. I was really afraid of adding a scary sounding medicine to an already pretty grueling regiment of weekly Methotrexate. I made the somewhat adolescent decision to have a great summer and not think about it until it's over.
Well, here we are then. Fall. I can't push it away forever. On Saturday, Erik and I watched the informational DVD on Remicaid and read the accompanying booklet. I would have a higher chance of developing deadly lymphoma. It will further suppress my immune system, which is already pretty fucked. Anytime I get bad cuts or sick or anything for the rest of my life, I will have to check with Dr. K because continuing with Remicaid could lead to fatal infections. But if I don't get treated with Remicaid, my RA will continue to attack my joints and I could be in a wheelchair in ten years or be unable to hold a pen, etc.
6) On the corner of fucked and fucked harder. Erik and I talked throughout the weekend about this decision. The rheumatoid arthritis irreversibly attacking my joints is a "probably gonna happen" if we don't do something more. The Remicaid giving me a potentially fatal infection that I can't fight off is a "smallish maybe." The "probably" wins here, right?
I can't continue to have a fever for the rest of my fucking life. It's making me HAVE NO FUCKING LIFE! Every time there is some event that I'd like to go to, I feel like I can't commit or buy tickets or make promises, because I have no idea how sick I'll be two days from now let alone two months from now. It just can't go on like this.
7) I turned 27 in June. I also celebrated the first anniversary of my marriage to Erik. Despite all these terrifying weights on my back, he's made me happy. We can find a way to laugh even when a handful of my hair has fallen out, or I've just puked my lungs out. Beautiful summer weekends that would have been spent sailing in Annapolis or trekking to Virginia beach were often spent homebound because I'd developed an infection. But they were always fun anyway, no matter what we did, because we had each other. (And a really great big screen HD-TV.)
Health-wise, that's where I am today. About to schedule my first infusion. Friends, it's been too long. I'm going to have marathon sessions of catching up on your blogs this week. I hope you all had a great summer, and that even if some things weren't perfect, you had someone you love to hold your hand through it all.
