Awareness Week....

Last Friday, October 12th, was World Arthritis Day...and I forgot about it until later in the day, after I taught my classes. Despite that, I posted a few things on Facebook about it, got a bunch of virtual hugs from my friends, and I know that I've educated at least some people I know since being diagnosed about rheumatoid arthritis. I also talk about it quite a bit in the microbiology class I'm teaching, considering some of the pathogen we discuss are possible triggers to arthritis, and taking some of my drugs (when I'm on them), classifies me as immune-compromised, so pathogens that may not affect them, can have adverse effects on me. It was all just in time for a  flare to throw my weekend off.

Monday, October 15th, was Pregnancy and Infant Loss Awareness Day. I didn't do anything for it, because many people I know still don't know about the miscarriage. It's still hard to get over, especially now that we are trying again, and every month turns into a waiting game. There's a small part of me that doesn't want to chance getting pregnant again and have to live through something like that again. I have the best support system of family and friends in the world, but I've never felt as broken as I did in the days following that ultrasound. I can't imagine going through it again. And I know that the benefits far outweigh the risks, because I know several people who have gone on and had healthy, happy families after losses like mine. But it still hurts. I have friends moving on with their lives - getting engaged, getting pregnant, having babies - and sometimes I just feel like we're just sitting here, stagnating, waiting for our lives to move on. I try so very hard to live in the moment, but between work and school, sometimes I wake up an wonder where the time has gone. It's been almost four months since I lost the baby, and yet sometimes it feels like it was just yesterday that I was walking through Target with my mom and she was buying a set of hooded towels, the first items bought, for my baby. A third of the year has passed and I feel like not much has changed since then, although my relationship with Dan has become stronger than it ever has been. If there is one good thing to take away from all of this, it's that I love my husband more than anyone on this planet, and between the two of us, we can make it through anything. I recognize that I am mildly depressed, but I find myself looking forward a little more each day. I'm developing stronger friendships with people that I've known for years and some of whom I've only known for a short time. And I am thankful for everything good that I have in my life.

Pain...

I took one shot of Enbrel, and then made the concious decision not to go back on it.

There is a part of me that believes that because I was taking my Enbrel for at least 2 weeks while pregnant, that I may have compromised my immune system so much that I contracted an infection that made me so sick, my body had to choose between getting better or protecting the embryo - which ultimately led to the miscarriage.

So I've been off all my meds since I took the shot at the end of July. And I'm paying for it - so much so that prednisone isn't really helping all that much. I just went back to work this past week (I'm a science professor) and started my own doctoral classes back up, and I can feel the RA creeping into my back and neck, where it has never bothered me before.

And what worries me the most is that by not managing my disease, I'm just setting myself up to have problems concieving again - it took us 9 months the first time, mostly because I was taking an NSAID that was messing with my ovulation. But my doctor has pointed out that some people have issues if their RA is not managed - which at the moment, mine is not. And who really wants to have sex when in this much pain?

My mother taught me that life is not fair, but this just plain sucks. Is it so much to ask for this one thing? We've waited "so long" to be in a place where we felt comfortable bringing a child into this world, and now I have to work so hard for it.

Well, the NY Resolution worked so well...

I'm back, mostly because I need a chance to vent. I'm in the middle of a flare, and I couldn't be more depressed about it if I tried.

I've been off the Enbrel for three months. I stopped because I got pregnant. I hadn't felt as good as I did since being diagnosed. It was wonderful.

Then, we went for a 10 weeks ultrasound to find out the embryo stopped growing at 5 weeks 6 days. I miscarried (involving a stressful trip to the ER) three days later.

That was a month ago yesterday. Yesterday, I gave myself my first Enbrel shot in three months. I'm in so much more pain than I've gotten used to.

It's just not fair sometimes.

NY Resolution: Try to blog more

I figure since I haven't been on the blog since October, I might as well update, although things seem to be going very well when it comes to my RA. The Enbrel has been working wonders - I finished my first term as a doctoral student while working my butt off and really haven't been feeling too bad. Although right before the holidays, I caught a cold and it eventually required antibiotics and a week of skipping my Enbrel to get through it. In the meantime, I lost my voice, which for a teacher is the worst thing possible. 

Also in the middle of that, I had a doctor's appointment (which was good because I needed the antibiotics anyway...). During the appointment, I had another ultrasound of my right hand - the knuckle at the base of the middle finger is the one joint that won't respond to any of my drugs. It was looking better, but during the ultrasound, there was still a significant amount of fluid in the sinovial sac, and it also looked like there was some bone erosion going on (not good). My doc prescribed more steriods, but between the missing Enbrel and the antibiotics that week, they did nothing. So today, I got my very first cortisone injection! I also got to be the guinea pig for two fellows working in the office. They were both very nice, and very interested in my case. One of them actually performed the injection (My joint was apparently an easy one seeing as there was already a lot of fluid in the joint). It was the oddest feeling though: as she injected the steroid into the joint (I could see it on the ultrasound), it felt like someone was slowly (and painfully) pulling my middle finger back. My doctor explained that that feeling was normal because we were injecting fluid into a fluid filled sac that was already filled with too much fluid. So now, I'm typing this with a semi-tender hand (I don't know if the local anesthetic has worn off yet or not) and hoping that this may be just the thing needed to stop damage to that finger - I kinda need my right hand to do stuff, like write!

It's kinda nice...

...to actually want to have sex with my husband.

That is all.

It's been a while...

And that's because I really haven't been feeling that bad at all lately! I guess the Enbrel is working, because I am working my butt off and not getting too fatigued. So, yay!

Although, I did have a flare last week. I am currently working 20 hours as a lab technician, teaching 2 biology classes, and taking 2 doctoral classes - and last Wednesday, it all caught up to me. I had been up late the night before grading exams and reading for my education classes (not easy stuff...) and the days and nights before had been similar to that. I had to get up early to get to work, so that I could finish grading the exams to get back to my students. I walked into my first class of the day, and the first thing they said to me was "You look tired. Are you sick?" I answered honestly, "Yes, but not "sick" sick, but chronic sick." By the time I had to sit through my 3 hour class, I was done.

I made a point to go home early on Thursday and veg out on the couch, watching Firefly (hence the shameless picture of my future husband, Nathan Fillion (my current husband somehow understands...)). It was a good way to make myself feel better. Since then, it's been pretty good. Let's hope it stays this way!

Vacation!

I just got back from a week long vacation to Disney and am totally surprised by how well I did, considering my RA! I walked pretty much for 4 straight days through the parks, and it wasn't until the end of the last day that I really really couldn't stand it anymore. This was unthinkable months ago, and we totally assumed that I would be renting a wheelchair to get through the week. So something appears to be working!

However, sitting in the car on the way home with Hurricane Irene escorting us back to RI did not help my poor little swollen toes - the low pressure was just a little too much!