I've been feeling a little bit grumpy due to some massive hip pain, but this video cheered me right up. These kids are awesome! And if they can keep going, then so can I!
Friday, July 29, 2011
I may have done some good things lately, but I'm not perfect - and sometimes I still struggle with having RA.
Take yesterday evening, for example. I was so desperate to get just a tiny break from the stabbing, grinding, endless pain I've been having in my hips all week that I took a Vicodin. Then, when that didn't help, I drank an entire bottle of wine. Oops. Needless to say this treatment regime didn't do much other than make me feel sick and go to bed early.
On the bright side, I think one benefit of having a chronic illness (if there is such a thing as benefits to having a chronic illness) is that I do hangovers like a rockstar - which is to say that I don't really get hungover. Or, if I do, it is similar enough to an ordinary bad day with RA that I don't really notice. I mean, I feel sort of crummy this morning, but I felt sort of crummy yesterday morning too. It's about the same.
In any event, I guess it's time to do something more productive to address my hip pain. I'm off to pilates with the hopes that I will feel better afterwards. Even for just a little bit.
Thursday, July 28, 2011
I am so grateful for this blog. It has helped me adjust to my diagnosis by giving me a place to vent my frustrations, acknowledge my successes, and record my story in the hopes that someone may find it and feel a little bit less alone on their own journey. It has also been the avenue through which I have "met" so many wonderful people dealing with various forms of arthritis in their own lives.
Many of these people have their own blogs with their own stories. I recently had the honor to "meet" Christina, who writes a blog called Curly Bones. Christina has had JRA since she was 3, which has resulted in several joint replacements. Her blog chronicles her current efforts to start a family while dealing with her own arthritis.
Christina says she has started her blog because there are so few resources out there for women living with arthritis and trying to get pregnant. I tend to agree. Even the book Arthritis, pregnancy, and the path to parenthood - which offers fantastic advice about being pregnant and parenting with arthritis - seems to skip over the fairly significant hurdle of getting pregnant in the first place.
But, for anyone with autoimmune arthritis, getting pregnant is no easy task. You have to stop taking a lot of your meds because they are unsafe for the baby - but for most of us those meds are the only thing controlling our arthritis to the point where we can lead a normal life! It's really scary to think about being without them. And some drugs, like methotrexate, have to be out of your system for a long, long time before you can start trying to become pregnant. Then, once you are safely off your meds, you have to deal with the physical pain and limitations of untreated arthritis while trying to, ahem, actively participate in baby-making. It's no easy task.
All moms sacrifice for the sake of their children, but women like Christina start sacrificing months, even years, before their children are even conceived. And Christina is bravely sharing her story for the sake of other women in similar positions. So let me be the first to say, thank you, Christina! And good luck!
Tuesday, July 26, 2011
I just spent a week as a volunteer counselor at JA Camp (Juvenile Arthritis Camp) - and I think I'm still recovering!!
After being rejected to volunteer at Camp JRA in Pennsylvania, I did a little digging and discovered that there was actually a camp for kids with arthritis right here in Colorado! It is a much smaller camp - run by the same families for the past 20 years - so I was initially unsure whether they would let an outsider join their counselor staff. But they welcomed me with open arms and I got to spend a week getting to know 40 amazing kids with arthritis, ages 8 to 16. And the really amazing thing about volunteering at a camp in my home state is that I will get to see the same kids at other events throughout the year, which I am really excited about.
Camp. Was. BUSY!
We swam every morning. We did crafts. We played games. We went boating. We went horseback riding. We had a hayride and roasted marshmallows. We got a hip hop dance lesson. We went fishing and bowling. The bomb squad brought their robots for us to see. The Denver Zoo brought some animals to visit (owl, macaw, alligator, possum, snake) and HawkQuest brought some predatory birds (falcon, barn owl, kestral, and a young bald eagle). We got to go into town for one night and the kids did go karts, bumper boats, mini golf, and water balloon wars. The junior counselors (14+ who helped us look after the little ones) got to go zip lining. We had FUN! And I took pictures and videos of everything and made a short slide show for the kids to watch on the last night of camp, which everyone really seemed to enjoy.
We also learned about our arthritis and had a visit from a nutritionist. The kids' pediatric rheumatologists were counselors at the camp, so they had plenty of opportunities to ask questions and learn about their arthritis, both formally and informally. Aside from myself, there was also another counselor with arthritis - she was actually former camper - so the kids had opportunities to talk with people who understood them. The kids were also encouraged to be responsible for taking their own meds, and knowing which meds they had to take and why. And there was always someone around who understood if you were feeling too tired or achy to participate, and no one made fun of you for sitting on the sidelines.
But it wasn't all fun and games. For one thing, I was truly exhausted and achy (horseback riding, in particular, did a number on me). And I wasn't the only one. The kids were also exhausted and achy too, and that was really frustrating for them when they wanted to be having fun. And there were some hard, heart-wrenching moments for me as a counselor as well. One of them was having to explain to the kids why it was ok for our vans to park in the handicap spots - because none of the kids thought of themselves as handicapped. And, while I was teaching a little girl how to make a lanyard, out of nowhere she said to me "my friends at school don't understand my arthritis." And another little girl even had to leave camp early with a fever and ended up in the hospital. With all the fun we were having, it was really hard to get these little reminders of the kids' struggles, their chronic illnesses, and their compromised immune systems. It just doesn't seem fair to them.
But overall, camp was full of positive moments for these kids. On the first day there was a little girl who was really scared to have her parents leave her, but when she found out that her roommates and I all had arthritis too - that we all took methotrexate and did enbrel shots too - she was willing to stay and give camp a try. That little girl had a huge smile on her face for the rest of the week - she may have ended up having more fun than anyone! And I loved seeing the kids at the campfire with their faces and hands completely covered in marshmallow. One girl in the group I took horseback riding had fallen off her horse the year before and was really scared to try again, but she braved through it and I was so proud of her. And, when we were driving back from fishing listening to Glee's version of "Don't Stop Believing," one of the little boys in my car asked if we could stay in the car to listen to the end of the song - so he and I sat in the parking lot and belted out the end of the song together.
Really I think that's the message that all the kids at JA Camp heard - don't stop believing. They might have JA, but they aren't going to let it stop them. And I'm so proud of all of them and so honored that I got to meet them and learn from them last week. And I can't wait to see them again at the next event!!
Tuesday, July 12, 2011
Looks like we got married just in time for me to officially become a housewife. While I truly respect women who are able to choose to be homemakers (and I totally envy families where this is financially possible), and while I would love to someday have the opportunity to be a stay-at-home mom, right now becoming a housewife was not my choice. Right now being a housewife just seems to be a nicer way of saying that I'm unemployed.
Since my graduation in December, I have been working at one of the research centers at the law school as a research fellow. Regrettably, the research center recently lost its funding - and, as a result, I lost my job. So, yesterday afternoon I said goodbye to my boss about moved out of my office at the law school.
While my fellowship was never supposed to be a permanent career choice, we had been pretty certain that it would be solid enough to give me and APL some time to get on our feet as a married couple. Alas, that is not the case. Instead, less than two months into our marriage, I'm staying home everyday while APL goes out and brings home the bacon. Not that APL minds - I supported him when he got laid off two years ago, so he's happy to return the favor - but it just wasn't quite what we expected.
Unfortunately, as I begin the search for a new job, I am also being forced to face some fears I was hoping to put off dealing with, at least for a little while longer: the issue of RA in the workplace. I was a student employee at the research center when I first got diagnosed with RA, and my (now former) boss was extremely supportive and considerate about my health situation right from the beginning. My RA was never a problem in this workplace. In fact, the fellowship was an almost perfect job for me - fascinating part time work with plenty of freedom and flexibility. I know it won't be easy to find another job that fits my situation so well.
This situation also raises a whole host of questions I hadn't begun to think about yet. For example, I've always felt that it is better for your boss to know that you are dealing with a chronic illness, but will that put me at a disadvantage compared to employees who are healthy? To tell or not to tell? And if you do tell, when is the best time? At the interview? After you are hired? When it first presents a problem? Never? And, can I even handle a full time job? Or will I have to settle for a part time job? And, if so, will I be able to find an interesting and fulfilling part time job? In this already broken economy, do I have any chance of being a competitive job applicant considering my health limitations? How will my body deal with all the new stress in my life? Will I crash at a critical moment?
Clearly I have a lot of thinking to do.