Friday, June 4, 2010

Second RA Anniversary

It's June again. I honestly have no idea how that happened. Where on earth does the time go? But I am now 27 years old and it has officially been two years since I was first diagnosed with rheumatoid arthritis. 

The first year of my RA diagnosis was hard. Really hard. All at once I was forced to figure out how to go from being a ridiculously overachieving dual degree graduate student (who also worked two jobs and played on a water polo team) to being a more reasonable dual degree graduate student who was also figuring out how to deal with a chronic and painful illness. This transition hasn't been easy. It's something I still work on every single day.

The second year of my RA diagnosis has had its major ups and downs too. We ultimately gave up on Remicade and moved on to Enbrel. I've dealt with a lot of physical pain, including hand pain, wrist pain, stabbing pain in my hips, more hand pain, more hip pain, and major troubles with my knees. I've had skin rashes, split lips that refused to heal, strep throat, and, my personal favorite, the bloody belly button. I've struggled a lot with fatigue and insomnia

All this pain resulted in high doses of prednisone and a lot of vicodin. High doses of prednisone led to weight gain and feeling really fat. Weight gain led to high blood pressure. Blood pressure medication lead to a hacking cough. Eventually, I decided to stop taking prednisone because of its negative side effects, but stopping had some nasty side effects of its own and ultimately resulted in me having to deal with more pain on a daily basis. 

Over the past year I've been extremely grumpy about silly things.  I feel like I'm always dealing with too many doctors and too many needles. I still haven't figured out what my boundaries are and how much work I can handle without making myself crash. As a result, I had to drop a class because I overestimated what I was capable of. I've had some had some really difficult and depressing days where I just wanted to give up. At one point, I felt like I had completely lost my focus in school and life. I even had my psychiatrist chastise me and tell me it was my own fault that my body was falling apart. And I've often taken out this frustration on poor APL, who spent almost the entire year unemployed after he lost his job last May.

But, despite all these difficulties, a lot of good things have happened in the past year too. More good than bad, I think!! I got to see the joy of my dear friend AJ getting married and I even officiated my friends PN & AN's wedding! My sister came to visit. I survived my first semester back at law school after taking last spring off, and I even organized and managed a huge international law conference with 40+ speakers and 200+ attendees. I learned how to use an autoinjector and eventually managed to use a syringe all by myself. I've really tried to work on being positive even when things suck, and finding reasons to feel happy even when I feel crummy. 

Despite dealing with RA, I've gotten to do a lot of traveling in the past year, which is something that I really, really enjoy. We traveled a lot in the U.S. this year. We went to the Great Sand Dunes with friends, and APL and I took a spontaneous southwestern roadtrip and also had another adventure in Utah. I visited my family in Florida (which was fun except for the scorpion!) and got to spend thanksgiving in California. I got to spend time in Yosemite and Groveland with my brother, sister, and best friend, and another friend's four-year old taught me an important lesson.

I've also done some amazing international travel in the past year. I carried my Enbrel with me to China, and my mom helped me hike the Great Wall of China!! Austin and I got to spend two days relaxing in Fiji and then had an amazing vacation in Australia and celebrated Christmas Down Under.

It's been a big year for me and APL too!! APL finally got a new job and we celebrated our 7th dating anniversary. Most importantly, of course, we got engaged!! I have a gorgeous engagement ring and we were lucky enough to get some amazing engagement photos, despite me not feeling well that day. I already can't wait for the wedding next May!

I think I've also taken some major steps in openly admitting the changes that having RA has brought to my life, especially considering how scared I was to talk about RA when I first got diagnosed. But  I have to admit that sometimes it is still difficult for me to deal with the fact that everyone wants to hear me say that I am feeling a lot better.  The truth is: I'm not. In fact, just this morning I made an appointment with my rheumatologist because I'm not sure the Enbrel is working anymore. Lately I've been dealing with a lot of pain in my knees, ankles, and toes. My knees, though not swollen, are painful almost all the time and are hot to the touch. As much as I hate the thought of it, it might be time to move on to Treatment Round 3. 

However, that realization doesn't devastate me as much as you might think. I guess I've learned some patience with my body and this process. And I know my friends and APL will always be there to support me, no matter what comes next. I also want to thank everyone who has been reading this blog and showing their support - it really means a lot to me.

And if there's one thing I've learned this year, it's to try to stay positive and keep chugging along! From This Point. Forward!!

2 comments:

Sarah said...

You are the best big sister ever and I look up to you more than anyone ever.

Mirela said...

I continue to learn so much about dealing with RA from you. It's incredible how much you dealt with over the last 2 years, yet you continued to adapt to the changes. I'm happy to see you have not given up on your dreams. I hope you'll find a treatment that works well all the time. I haven't found that yet either but I remain hopeful.

Hugs