New Scary Medicine

My vision is still pretty blurry.  It's to the point where I'm pretty annoyed with how slowly it's coming back.  It's frustrating living in a hazy world.  I want to read books.  Heck, I want to be able to read my mail, or documents I print to make sure that they are correct.  Super thankful for technology, because if I couldn't work right now, I'd probably have gone crazy.  But it's still hard to feel like I'm not as productive as I could be, to feel limited.  I just want to feel normal.  I misjudged a curb yesterday and fell badly on Main Street.  Two of my coworkers saw it, so it was super embarrassing.  My leg is badly bruised, and I pulled something in my arm catching myself.  I'm ready not to do that again.

I'll be starting on methotrexate next week.  Methotrexate is a chemotherapy drug, an antibetabolite.  It works to suppress the immune system, by blocking an enzyme needed for cells to live.   Methotrexate originally got it's use in the 1950s as a treatment for leukemia and other cancers.  The American Uveitis Society indicates that "In patients treated with methotrexate, the medicine has been shown to preserve or improve vision, decrease signs and symptoms of inflammation, spare the use of corticosteroids, and allow the performance of surgical procedures, such as the removal of cataracts, to proceed safely."

Methotrexate is an injection that I'll give myself weekly.  I was able to pick it up from the pharmacy today, but I have to go on Tuesday to the doctor's office to be trained on how to inject it.  It has a ton of crazy side effects.  One important one is that you cannot get pregnant while taking it.  This is something I rarely talk about, but I will never have kids.  It was decided for me long ago in a doctor's office at Children's Hospital that the effort to put my body through a pregnancy was not worth it to me.  But it's different to have to think "ok, if by some random chance I did miraculously get pregnant, that would be the end of it."   It's weird to have three doctors remind you that you indeed cannot have a baby right now.

There's also pretty major concerns for your liver on this medicine.   You have to take folic acid with it in order to try to ward off some of the side effects.  Monthly bloodwork will be done to monitor everything.  Since it suppresses your immune system, there's always the important risk that it's so much easier to become sick with infections.  My entire life is lived in the public.  I live in a world of public meetings, events, public transportation....heck, I even live in a hotel.  Germs are all around me.  The risk of infections scares me.  The last drug I took that was similar to methotrexate was in 2011 and it made me horribly ill, with nausea and vomiting and fevers, as well as affected my pancreas.  But the risk of going blind is too severe to not try the meds.

Can you tell I've been doing research?  I'm so thankful for my chemistry/biology background (I was almost a chemistry teacher).  It helps to understand everything that is going on in my body.  I agonize over drug choices.  My doctors are often amazed at my knowledge and the amount of information I insist on before I'll take any medicines.  Heck, I don't even eat processed cheese...why would I be any less picky with a medicine?

Speaking of processed cheese....a cooking blog I follow does an "Unprocessed October" where you challenge yourself to eat only unprocessed foods for the month.  It's been interesting to read the posts, since most of my life these days is unprocessed foods.  I could do better, even as I write this I'm snacking on a Yoplait Whipped Chocolate Yogurt.  I may try to do an entire challenge and really commit to cutting out those few things left in my diet that are a little more processed.  Maybe make my own yogurt and breads (is flour too processed for an unprocessed challenge?) and switch to homemade peanut butter cups using my natural peanut butter.   It's getting to be the end of Farmer's Market season, so fruits and veggies will be more limited options-wise, which is when I tend to get a bit lazier about food.  I try really hard to eat in season, and I'm so thankful for my farmers who help make that possible!  And my diet is super reasonable already, I already make sure I try to buy the freshest, highest quality ingredients.  I cringe anytime anyone suggests I change anything in my diet when I tell them about my ulcerative colitis.  Because first off, it's not caused by food and second off, I already spend so much time and energy thinking about every thing I put into my mouth.

Anyways, I see the eye doctor again next week.  Hopefully by then, I'll be able to start tapering the eyedrops.  We're going to do it really slowly, to ensure that it doesn't come back, which is common in uveitis if tapered too fast.  I've started tapering the oral prednisone, going from 30 mg a day to 27.5 mg a day.  Slowest taper ever, but I'm too afraid to rush it.  Eight days of being legally blind and 21 days of vision loss will change your life a little.

I still have the Go Fund Me set up, if you are so inclined:  https://www.gofundme.com/cydtz2-angelas-medical-fund