Thursday, January 29, 2009

Gluten-Free From A to Z

The other day RK and I went out to lunch. Being an amazing friend, RK found out that a local Thai restaurant had a gluten-free menu, so I had spicy fried fish for lunch! It was delicious!

While we were on the subject of my new gluten-free lifestyle, RK and I started talking about gluten-free products we had tried – which ones tasted good, which ones tasted bad, which ones were too expensive, etc. It was then that RK suggested that I should keep some kind of a chart, so that we could remember which products we liked and which we didn’t.

I realized that RK was right – we ought to review and keep track of the gluten-free products we buy because some of them can be a little pricey. The price is totally worth it if I enjoy eating them, but otherwise those products should be avoided in the future. APL thought the list was a great idea too. But we decided that rather than keeping the list for ourselves, we would post it online, in case other gluten-free people might find our reviews useful someday.

Our new blog is called: Gluten-Free from A to Z. Each product entry includes the name of the product, the brand, the location we purchased it, how much we paid, a review from A (APL) and a review from Z (me). We thought reviews from each of our perspectives would be interesting – APL’s because he can compare gluten-free products to regular products, and me as a person on an entirely gluten-free diet. Unfortunately, so far APL and I have said almost the same thing on every product we have reviewed! We must have really similar taste and/or spend way too much time together! But I’m sure as we learn to be more specific with our reviews, we will each develop our own style.

In the future we hope to include gluten-free recipes and info about eating gluten-free at restaurants on the blog as well. In the meantime, we’re just enjoying trying these products together and writing the reviews. It’s been a really fun project for the both of us.

If you’d like to check out Gluten-Free from A to Z please click here!! And thanks for the awesome idea, RK!!

Sunday, January 25, 2009

Good & Bad; Happy & Sad

After a weeklong delay, I finally got my fourth Remicade infusion on Wednesday. Aside from a huge bruise on my hand from the nurse’s first failed attempt at placing the IV, the infusion went off without a hitch.

During the week that I waited for my rescheduled infusion I actually felt a lot worse than I had in a long while – really exhausted and achy. But, after some reflection, I realized that might actually be a good thing. Maybe it means that the Remicade is working, since I felt worse when my next infusion got delayed. And in the days following the infusion I felt quite a bit better. I even managed several hours of shopping and errand running yesterday that would have been unthinkable last week. So maybe we are finally on the right track with my treatment. And that is a very good thing.

Still, I can’t help feeling a little bit sad. APL went skiing today – and it looks like it’s a fabulous powder day, since it has been lightly snowing all morning. But obviously I wasn’t anywhere near well enough to join him on the slopes. Just the thought of putting my feet in snowboard boots makes me cringe a little. And I may be able to withstand several hours of running errands, but I certainly don’t have the energy required for snowboarding.

I feel sad that I can’t be out on the slopes today, doing something I love with someone I love. But I was sort of surprised when I realized that, more than feeling sad for what I have lost, I felt sad for what APL has lost. Yesterday APL had a lot of trouble finding someone to join him today – friends were working, studying, lazy, etc. It used to be that it didn’t matter if our friends had 100 excuses, because we always had each other. But now there are times when I simply can’t be there for APL the way I used to be. And it’s sad.

I don’t really think that many people have bothered to think about how hard my RA is on APL. He certainly didn’t sign up for this either. This wasn’t the way he thought our relationship would turn out. I’ve had to change my life and accept some losses – but so has APL. He has made sacrifices and accepted changes that he didn’t want too.

Despite these sad things, the fact that APL still stands by my side and supports me 150% just goes to show how lucky I am to have him. And that’s something for me to be happy about.

Thursday, January 15, 2009

My Body Is Different

Last night, APL and I were talking about the Remicade infusion I was supposed to get this morning. Thinking to the last Remicade disaster, I stupidly said “Well, it couldn’t possibly take any longer than last time could it?” To which APL hurriedly replied, “Don’t jinx it!!!” Too late.

I’ve been extremely achy and sore for the past couple of days. I guess that’s what they call a “flare.” So, needless to say, I didn’t have an easy time getting myself out of bed for my 9:00 am appointment. I was about to head out the door when I noticed a voicemail on my phone. It was from the nurse. I called her back.

Last week I saw the rheumatologist and he decided to try increasing my dose of Remicade. The nurse told me that there was a problem with the paperwork, and my insurance hadn’t approved the increase yet. So, if I came in today, I wouldn’t be able to get the increased dose. She said she could get it worked out in a couple of days. So we rescheduled my infusion for next Wednesday. Turns out that Dose 4 of Remicade is going to beat Dose 3 by a landslide. Dose 3 may have taken six hours, but Dose 4 is going to take six days!

Luckily, I had plenty of time to reschedule the appointment. Seeing as the semester just started on Monday it might seem odd to some of you that I have any time at all. Well, the semester did start…but I didn’t start with it. I’ve decided to take the semester off from school to concentrate on getting healthy.

The decision to take the semester off has been brewing for a while. It started during the insane intensity of finals, grew during my post-finals total exhaustion, and blossomed over the weeks of vacation where I didn’t find my health improving all that much. The thought of starting a new semester while still not feeling well and in a state of un-recovered exhaustion slowly became unthinkable. Taking some time to set my body and my mind straight became the only option.

Since then, I’ve been trying to figure out a way to blog about it so that my feelings about this decision would make sense to people reading it. My body, mind, and heart are certain it is the right decision. I need this time to finally figure out how to deal properly with my RA so I can get on with my life feeling good, not soldering on just because. But, at the same time, I’m not entirely happy with the decision. I know that I am smart and capable. I even managed to do well in my classes last semester, despite the struggle. I’m also worried that once I run out of paperwork and doctor’s appointments to concentrate on, I’m going to drive myself nuts with my lack of things to do this spring.

But, my cousin KF sent me some extremely relevant words of wisdom. KF also has RA, and she has been a really good source of info and support for me since my diagnosis. Even though she lives on the east coast and we don’t talk much, it’s been good for me to have someone I knew personally that understands just how yucky I feel. She has also proved to be a really good model for adapting to the challenges of RA and still living a happy life. KF and her husband just adopted a beautiful baby girl. This baby is seriously adorable! I can’t get enough of the pictures!

Recently, KF also made a difficult decision, though certainly a bigger decision than mine. She decided to resign from her job and stay home with the baby full time to lessen her stress and provide the care that her new daughter needed. She told me that she wasn’t entirely happy with her decision either, because so many other women manage to balance their families and careers, and she knew that she was at least as smart as any of them. But, she said, she has realized that while she may be as smart and capable as any of them, her body is just different. And she’s right. While my mind may be totally capable of law school right now, my body just isn’t. My body is different and I have to learn how to take care of it.

So thank you very much, KF, for helping me understand that taking this semester off is no failing on my part. It’s time to adapt to the new direction my life is going. And I hope your decision serves the same purpose for you. Hugs and kisses to your baby girl!!

On a sort of unrelated note: HAPPY BIRTHDAY, MAMA!!! I love you!!!

Monday, January 12, 2009


4,000: number of miles we drove over the holidays
60: number of hours we spent in the car over the holidays
44: number of days I’ve been gluten-free
39: number of posts since I started this blog
29: number of days since my last blog post
26: number of years I have been alive

Today is my twenty-sixth birthday. And it’s been almost a month since my last blog post. I’m not really sure where to begin.

Finals were really rough this year. I wasn’t able to keep up with the reading and note taking in any of my classes the way I wanted to, so I had a lot of catching up to do. Aside from the mental strain of finishing four law courses, the physical strain of spending so many hours in the library preparing for exams was totally exhausting. My body hurt so badly and I ended up on a muscle relaxant for the excruciating jaw pain. Also, let me tell you that three or four straight hours of typing during an exam with the pressure of your entire semester’s grade while your fingers cramp isn’t particularly pleasant either. When finals finally ended I was honestly more tired than I have ever been in my whole life. I felt absolutely run down. (The good news? I haven’t gotten all my grades back yet, but so far it looks like I somehow miraculously managed to do pretty well. So that’s a relief!)

Then, the day after my exams ended, APL, River and I bundled into our new Subaru (which we love!) and started driving to California for Christmas. Honestly, APL and I love driving together. It reminds us of the three months we spent on the road after college, where we drove 19,000 miles to all 48 states. Plus, driving ends up being less expensive than flying and it meant we got to have River with us for the holidays, which I loved. So we popped in a book on tape and drove two days through two blizzards and four states to arrive safely in California.

APL’s parents just bought some beautiful property in a small town in Northern California near Yosemite National Park, where they eventually plan to retire. They just finished building a house on it and we were lucky enough to join his family there for a very restful Christmas. One day we drove down to Yosemite Valley with APL’s brother and his brother’s girlfriend and we all went ice-skating in Curry Village. Those 45 minutes of ice-skating were more physical activity than I had done in six months, so I was really proud of myself for trying it, especially considering that a lot of my RA pain is in my toes. It actually felt great and we had a wonderful time! (Although it seems I did pass my tolerance point because I did end up getting sick on the drive back to the house – but it was totally worth it!). We spent the rest of the week watching movies, playing with the puppies (APL’s parents have two dogs), enjoying the beautiful property, and just relaxing. APL even got to drive the tractor!

After Christmas, APL, River, and I headed to the Bay Area for New Years. We spent one afternoon at Point Reyes National Seashore, and then visited with some of our fantastic friends. Our friends are amazing. LK (who has been my best friend since kindergarten) helped me overcome my exhaustion to shop for something to wear to the wedding. She is like my personal shopper, for which I am eternally grateful. And the girl time I had with her was very much needed.

MP and SC were total champs in helping me stay on the gluten-free wagon. Gluten-free eating is really easy to do when you are eating at home, because there is a substitute for almost anything you might want to eat. But being gluten-free is a lot more difficult when you are eating out because everything has gluten on it and substitutes at restaurants are relatively rare. I almost fell off the wagon one night at a Japanese restaurant when I realized I couldn’t have tonkatsu (breading), tempura (also breading), unagi (because of the bbq sauce), or even soy sauce for the sushi!! But MP was kind enough to ask the waiter and discovered that they had gluten-free soy sauce! And the next night when we all went to shabu-shabu, SC showed up with a gallon of gluten-free soy sauce in case they didn’t have any at the restaurant. And thank goodness he did because otherwise I wouldn’t have enjoyed that meal nearly as much!

We spent New Year’s Eve at a Lyrics Born concert, which was really fun. I even danced a little bit! But I am also extremely grateful to MP for securing us someplace to sit during the rest of the concert, as I wouldn’t have made it through the evening otherwise. I am so grateful to have such wonderful friends!

On New Year’s Day we hopped back in the car with APL’s brother and his girlfriend and headed to Portland, Oregon for a friend’s wedding. We stopped at Redwood National Park on the way, which was very beautiful. River really enjoyed playing on the beach, although she still hasn’t quite figured out that you can’t drink ocean water! The wedding was lovely, and it was really fun to get to see friends from high school.

After the wedding we made the long trek back to Boulder and LK came to visit for a few days, which was really nice. Since then I’ve spent the past few days sleeping and resting. I really enjoyed the holidays but they wore me out too!! Today it is snowing and I am spending my birthday morning in bed, updating my blog. And now I’m considering going back to bed for a while. Hey – it’s my birthday! I can do what I want!