Wednesday, January 23, 2013

Everyday Victories

Sometimes it seems like RA soreness and fatigue can make even the smallest everyday activities seem like a huge mountain to climb. I recently made the New Year's resolution to make sure my first baby - my dog River - gets enough exercise. This means that every day I have to bundle up OZL, load him into the stroller, and get all of us out the door for a walk. And while sometimes this seems next to impossible I'm really doing my best to do it every single day.

Today we walked for a mile and a half. It's a little victory, but it got me and River some much-needed exercise and raised $1 for the Arthritis Foundation when I submitted it to Everyday Victories! If you have an "everyday victory" you should submit it too! For every victory submitted, UCB (a biopharma company) will donate $1 to the Arthritis Foundation until $30,000 is raised.

Tuesday, January 15, 2013

Bouncing In His Sleep

Submitted for your entertainment:

video

You Really Don't Make Me Feel Very Special

Dear CVS Specialty Pharmacy,

I hate you.

After you very nearly ruined my Christmas, somehow it is already time to call you again and request another refill of Enbrel. So here's how that went:

After pressing "4" for "Rheumatoid Arthritis," my call started out with 9 minutes (not an exaggeration) of crappy jazz music, interspersed with the occasional "your call is very important to us, please stay on the line" nonsense. 

Then the phone probably rang 20 times. I was about to hang up and try calling back when a very unenthusiastic employee finally picked up.

I said hello and told her that I would like to order a refill of my Enbrel. She asked for my last name, which I gave her and spelled. She asked for my first name, which I gave her and spelled. She asked for my birthday, which I gave her. She asked me to verify my mailing address, which I did. She told me to hold on.

It was at this point that OZL woke up from his nap and started screaming. I tried to finish my phone call before going to get him - we had to be almost finished, right?

Wrong. When she came back, she asked when I would like the shipment delivered. I said I would prefer tomorrow or Thursday. She asked if I had any medication left. I told her I did not. She asked when my next dose was supposed to occur. On the advice of one of my readers, I lied and said Friday (it's really Monday but I didn't feel like cutting it as close as last time.) 

Then she asked me to verify my mailing address. And I said, wait...didn't I just do that a minute ago? And she quite rudely said I hadn't. So, instead of arguing with her, I gave her my address again. And she went away again. 

When she finally came back she said I would receive it tomorrow. Then she hung up.

The whole interaction took almost 20 minutes. And I have to say that I'm not feeling very confident that my Enbrel will actually arrive tomorrow. 

Here's to hoping it actually comes this time. And here's to hoping I can find time this month to call my insurance and ask if I can switch back to Walgreens Specialty Pharmacy instead - because they sent me my Enbrel automatically every month with none of this nonsense.

Thirty!

I was twenty-five years old when I was first diagnosed with rheumatoid arthritis. Last Saturday I turned thirty. It's really hard to believe that I've been living with RA for five years now. My life has changed a lot in that time. 

For example, I used to be a pretty good snowboarder. I had a season pass to Mammoth and the first year we moved to Colorado we had the Five Mountain Pass. We went as often as we could. And I was fast. And I could go off jumps. And I loved it. 

Then I got diagnosed with RA. And I was so, so, so fatigued all the time. Just the thought of putting on all those layers and all that gear and dragging my snowboard to the bottom of the lift exhausted me. I was so achy and sore already that I couldn't bear thinking about something that might make it worse. And I was terrified that I would fall and hurt myself - inflicting some kind of injury on my already messed up joints.

So my snowboard just sat in the garage for the last four seasons.

But last week I got back on it. My amazing mom flew to Colorado to take care of OZL and my amazing husband arranged for us to spend a few days in the mountains for my birthday. He chose a small ski resort where it was less crowded and the lift tickets cost a lot less (so I wouldn't feel pressured to do more than I was ready for). And we went snowboarding for the first time since I got diagnosed with RA.

Putting on all that gear and getting to the bottom of the lifts was exhausting. I was super nervous on my first dismount from the lift and on my first run. I ended up being so shaky and tired from the first run that we had to rest in the lodge for almost half an hour. 

But then we took another run and something awesome happened. My body remembered. My body full of crazy, messed up joints and exhausted muscles still remembered how to snowboard! And it was fun!

We ended up snowboarding almost all day. We probably didn't take as many runs as we used to, and we certainly spent more time resting, but we still had a blast. And I wasn't even that sore the next day so we were able to do a few more runs the next afternoon. We're already making plans to try to go again this season.

And I'm pretty proud of myself.

Wednesday, January 2, 2013

Happy New Year

Happy New Year, everyone! I hope your year is off to a really great start!

Unfortunately, we've been off to a bit of a rough start around here. OZL somehow got a little cough (is there anything more heart wrenching than a baby coughing miserably?) Then he got a fever while he was fighting off the cough (oh yeah, a feverish coughing baby is a whole lot more heart wrenching). So the first two days of the new year have found us with one sad, sick baby.

I've also hit that familiar wall of fatigue - where it seems like it takes an immense effort to do anything. Which, of course, makes caring for a sad, sick baby slightly more difficult. And for some reason my toes have also chosen this time to get so swollen and painful that it hurts to walk or stand. Awesome. I see my rheumatologist again on Friday to talk about whether the most recent trial treatment for my "fibromyalgia like symptoms" is helping. Honestly? I'm not so sure it is.

Luckily, APL had yesterday off and was able to work from home today to help me out. I'm really grateful he has a little flexibility at work. So we're hunkered down and hanging in there, waiting for OZL and me to feel better.