Tuesday, January 31, 2012

A Little RA Q&A

A little while back I started a segment on my blog called “RA Friends”, where I encouraged others with rheumatoid arthritis to open up about their life with RA by answering some commonly wondered upon questions. At least questions that I felt were important for outreach to the newly diagnosed or the newly searching for connections. I currently am working on rebooting that segment, and I thought I’d start again by answering some questions about my own experience with RA. Some of those questions that people might wonder about if they haven’t read much about me or known me very long, and some questions that I‘ve received by email from readers. So here it goes . . .




How long have you been diagnosed with RA and what treatments have you been on?


I was diagnosed with Juvenile Rheumatoid Arthritis 13 years ago and have since been on my fair share of arthritis drugs. I was young so my treatment first started with simple steroid injections at the site of the swelling, sometimes associated with draining the fluid from the joint. That was a fun time. After months and months of those exciting needles, my then rheumatologist turned to weekly injections of Methotrexate, a drug that I am currently on in pill form, but that took me a while to find the right dosage. I had some unfriendly reactions to it at first, but eventually we came to find a dose that worked and kept me feeling well.

Later we added twice weekly Enbrel injections. As a teenager I was giving myself three shots a week on Tuesdays and Thursdays. At this time I was such a baby about needles still that we had to enlist the help of family friends who happened to be nurses and neighbors that were doctors. Once I even had to get my older brother with Diabetes to give me a shot. What a wimp.
 



Eventually I needed more, and we turned to Remicade. I was getting an IV once every four weeks for a few years, which carried into my college years. Later on my new rheumatologist would decrease how often I came in for treatment, but I was on Remicade for a total of 5 years.

I chose to go off Remicade and back on Enbrel, though at a once-a-week dose. It’s currently a love-hate relationship. I love how it works to give me no swelling and little joint pain . . . But I hate those damned shots.


A little lighter now, what hobbies do you have and how has RA affected them?

 

Growing up I didn’t have a lot of very “active” hobbies, I think mostly because I didn’t think I could do much physically with my RA. When I met my husband, a very active person himself, I pushed myself outside of my comfort zone and found that I am able to enjoy quite a few very active hobbies. I love skiing. I’m not a great skier, but I love putting some music on an iPod (oddly, the only time I‘m a hip-hop fan is while skiing), cruising on some “blue” runs and carrying on conversation while skiing side-by-side with friends. I found that keeping up with exercise and building my leg muscles helps with keeping my joints happy while skiing.
 



A couple years ago I started golfing by taking a ladies golfing class through a local driving range. Again, I’m not the best golfer, but it’s a fun thing to do, and also easy on my joints. Recently I started paddle-boarding, which I LOVE. It would be nice to take up surfing while living in Hawaii, but I like the calmness of paddle-boarding for now.




On the less-active side, I love to cook and bake. I’ve been teaching myself how to cook over the last couple of years, and trying to create new Paleo baked-goods recipes is both challenging and fun! I’m also an avid movie and TV watcher. I like to place my laziness and watching shows in the category of hobbies.
 

How do your friends and family deal with your arthritis troubles?

 

Most of my family members are very understanding about my health, and probably a little too inquisitive, but it’s a good thing. My parents went through the whole diagnosis and beginning of my life with arthritis while I was growing up, so they take my ups and downs very personally. If I ever need to talk about my pain I go to them, but I also like to keep them from the hurt of knowing my worst moments (if that makes sense).




My husband is the person I am the closest to, and he tries his best to understand what I’m going through, but is aware that he won’t ever really be able to understand the pain. He is extremely supportive, though, and will always accompany me to any doctor appointments I have, which I find incredibly helpful! Love that man!

Only a few of my closest friends know much about my arthritis. I pick and choose who to tell, and those that know understand that I sometimes have limitations . . . For the most part!


How do you stay positive on your worst days?

 

We’ve all had our bad RA days. Days where we can’t get out of bed or off the couch. When we’re embarrassed to be seen with swollen joints. I try to relax as much as I can on those days and treat myself to things I might not normally do very often, like getting a pedicure or splurging on some online shopping. But even on days when there isn’t obvious swelling, things can still be hard on me. I try to preoccupy myself with things I love, like being with my family, beautifying my little home and playing with my pets. Often just taking some time to talk it out with my husband and then laugh about things makes me feel so much better.




We all have our tough days. Sometimes I’ll give myself 30 minutes to stress or feel bad about things, and then after the time is up I gotta move on and get working toward making things better.


More questions and answers to come!



This article was originally written for Achieve Clinical Research, and can also be found here.

1 comment:

  1. Thank you for posting both your muffin recipe and your RA Q & A. My huband was recently diagnosed and the rheumy doc is still trying to get the right combo of drugs for him. We know it will just take some time. We are both trying to stay positive even though he has been severely affected in his wrists & hands. I can't wait to check out more of your paleo recipes! Thanks again. Andrea

    ReplyDelete

I love your feedback! Leave a comment and let me know what you think, and feel free to send me an email any time.

xoxo
Lyda