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.

Bouncing In His Sleep

Submitted for your entertainment:

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.

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.

Dear Santa: Please Bring Enbrel

It's been a while since we've had a pharmacy fail adventure around here! But we had another - just in time for Christmas!

My insurance requires me to order my Enbrel from a specialty pharmacy. This means that once a month I get on the phone with the pharmacy, answer two dozen questions (I have no idea why they ask me every single month instead of, you know, keeping it in a file or something), and arrange for an overnight shipment of Enbrel. I get four pens at a time.

Last Monday, I took my last dose of Enbrel and immediately called the pharmacy for a refill. They said I had no more refills and that they would need to get authorization from my doctor and call me back. Now, here's the part that is my mistake - I should have called to nag them the very next day, but with all the holiday preparations it totally slipped my mind. They didn't call back until Thursday. Still, they assured me my Enbrel would arrive on Friday.

It didn't arrive. Obviously. 

I was quite worried. I really didn't want to miss a dose and feel crummy (i.e. crummier) on Christmas. So I called the pharmacy. They were closed for the weekend. Finally I found a customer service number that was open and called them. They said the package would arrive on Monday. That worried me too, because at that point the Enbrel would have been out of the fridge for five days. Would the Enbrel be ok? They didn't know. They gave me a UPS tracking number and told me to call the pharmacy on Monday.

I entered the tracking number on the UPS website. "Your package is on its way." Not very specific. I called UPS. "Due to the high number of calls we are currently receiving, we cannot take your call right now." They hung up. I understand that UPS was very busy with holiday packages - but this is my medicine! It's very important! Do you really mean I can't talk to a human about it?!? 

In the end, was completely unable to get any useful information from anyone. I had to settle for crossing my fingers that the Enbrel would (1) actually arrive on Monday and (2) still be safe to take so I wouldn't miss a dose. And, like a small Christmas miracle, it actually did arrive - ice packs still frozen. I finally spoke to the pharmacy and they assured me that UPS kept the package in a refrigerator over the weekend. 

So I was able to take my dose of Enbrel and have a very lovely first Christmas with OZL!! A happy ending!! I hope everyone else had a wonderful Christmas too!!

Healthline's Best Health Blogs of 2012 Contest

Recently this blog won an award for being one of the 22 Best Rheumatoid Arthritis Blogs of 2012.

Now I've been nominated for Healthline's Best Health Blogs of 2012! First prize wins $1,000, which APL and I would happily spend on OZL (babies are expensive, man!) 

I would really, really appreciate your vote!! You can vote once a day until February 15, 2013. Click here to vote - or use the badge on the menu that says "Vote for Me!" Thank you!!

PRODUCT REVIEW: Zippy Suits

DISCLAIMER: I received this product sample unsolicited and for free - and promised to review it completely honestly without receiving compensation. For details, please see my Product Review Policy.

Of the many frustrations I experience being a mom with RA, one of the worst is hand pain. When my hands hurt it just seems like caring for OZL becomes a lot more difficult. All his stuff is just so....little! All the little clothes and bottle parts and diapers and tiny-things-that-need-manipulating-with-my-sore-fingers. And all those annoying snaps. They. Are. On. EVERYTHING!

Which is why I was particularly grateful to find out that some baby pajamas come with zippers. On the ones I found, the zipper started in the middle of the collar and zipped all the way down one leg. This means that you have to shove the baby's other leg all the way down the side without the zipper, which can be a bit difficult with a wiggly baby. But it's still a lot easier than snapping a million and a half snaps - especially in the middle of the night or early in the morning when I am the most sore!

Then I got an email from Nicole about Zippy Suits. She thought her design could be a big help for parents with arthritis, so she sent me one to try. And she was right! Unlike my other zipper pajamas, Zippy Suits zip across the legs along the inseam - like those pants that have snaps for "easy" changing. Only is a zipper for actual easy changing! The zipper has a velcro cover to protect it from exploratory little hands and the fabric is super soft, 100% cotton. You have to pull the suit over the baby's head to put it on, which at first I thought might be tricky, but it turns out the folds in the collar make it quite easy. OZL seems to find it very comfy. Plus, it is adorable! All in all, we love our Zippy Suit!

NOTE: Zippy Suits are made in the UK and I found that the sizes were a bit bigger than US sizes I was used to. For example, OZL's Zippy Suit is size 6-9 months and still fits him with room to grow - whereas he is already wearing 12 months in most US brands.

Jingle All The Freezing Way!!

Today we braved the 20 degree weather to participate for the third time in the Jingle Bell Walk for Arthritis! I am super excited to report that we had our biggest Team Z yet - 18 adults, 1 kid, 3 babies, and 2 dogs!!

I did almost the whole 5K despite my sore knee (I must admit that I took a slight shortcut at the end because OZL, despite being bundled like an eskimo, was getting cold and hungry). I'm so grateful to all my friends for coming out today to support me despite the freezing weather!

Pop Goes The Kneesel (Again)

Remember when this happened? Well the other day it happened again. I was at my sister's apartment and we were making dinner. We were listening to music, but then decided to put Funny Girl on instead. I sat down on the floor in front of the TV to put the movie on and then got back up - no problem. 

But as I walked over to turn the music off suddenly my knee gave out and I was on the floor in tears. Just like last time. Only this time I was carrying OZL when it happened.

Luckily he was strapped to me in the BabyHawk, so I didn't drop him or hurt him or anything. But he did get pretty scared as we fell to the floor. My sister rushed over and took him from me and he calmed down in a minute or two. And with some ice, some rest, a knee brace, and lots of advil my knee is doing ok too. It still hurts but I can walk on it and everything. So everyone is fine.

But it is a little scary to think about the what ifs. What if this had happened when I was carrying OZL down the stairs? What if I had been alone? Or in the grocery store? What if I had dropped him or he had gotten hurt? 

I guess it doesn't help to get to freaked out over things that haven't happened. Things that hopefully will never happen. But it does make you think. Being a parent means being as careful and prepared as you can be, but it also means being ready to deal with the unexpected. I guess being a parent with arthritis just makes things a little bit more unexpected.