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!!

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.

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!!!

Twenty-Six

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!

Gluten-Free!

I haven’t eaten any gluten in two weeks. And after reading that sentence you’re probably asking yourself, what the heck is gluten?

Let’s begin at the beginning. After I met the massage therapist who said she controlled her RA with diet, I started looking into what kinds of diets are supposed to help with RA. There are all kinds of theories out there: vegetarian, vegan, gluten-free, casein-free, etc. I couldn’t decide where to even start. So, amidst the chaos of my last Remicade infusion, I asked the rheumatologist what he thought about the diet theories. He said that he had seen the most results on a gluten-free diet. So I started looking into that.

As it turns out, pretty much every medical condition or symptom I have ever dealt with in my life is on the list of symptoms for gluten-sensitivity. To name a few:
• Fatigue/weakness
• Vitamin and/or mineral deficiencies
• Headaches, including migraines
• Joint/bone pain (Hello, RA?)
• Irritability
• “Fuzzy brain” or inability to concentrate
• Hashimoto’s disease (my other autoimmune disease!)
• Bruising easily
• Muscle cramping
• Swelling and inflammation

Now, I am totally aware that if you read a list of symptoms you can convince yourself you have any disease in the world. (In college one of my friends went on the internet and convinced herself she had toxic shock syndrome. It took us hours to talk her out of it) But still, I have to admit that there’s something uncanny about finding pretty much every health problem I have ever had on a list of a single syndrome. And if the rheumatologist says it could help with my RA, it seems worth a try to me.

So: two weeks, no gluten. And what is gluten? Gluten is a mixture of proteins found in wheat, rye, and barley. The obvious foods that contain gluten are those with flour in them: bagels, bread, most baked goods, crackers, pasta, pizza, pretzels, etc.

But gluten is also found in slightly less expected things, like: beer, licorice, and soy sauce. In fact, did you know that wheat is the second ingredient in soy sauce? It comes after water and before soy! So, the bad news is that gluten is in almost everything. But the good news is that there are a lot of gluten-free alternatives on the market today. Especially in a hippie town like Boulder! So I don’t really have to go without these food items. I just have to replace them with versions made with potato or rice flour. And my local supermarket has everything labeled with the cute little “no gluten” symbol. It’s awesome.

And, of course, the question that everyone wants to know the answer to (both with this and with my RA drugs): is it helping?

Honestly? I can’t say. I am in the middle of law exams. I took the first one last Monday (eight page fact pattern for a two credit class!!) and I have another this Monday followed by a third on Thursday. And since I’ve been struggling with my work all semester I have a lot of catching up to do before those exams. So I am in a state of so much mental and emotional stress that I really can’t properly evaluate how the changes in my diet are affecting me. So ask me again in another two weeks.

But, I can say two good things. First: I feel like my appetite has improved a bit. I used to feel pretty lethargic and I would just eat because someone reminded me it was time for a meal. But now I find myself hungry. Which is nice.

And, second, APL and RK have been total rock stars of support with my new diet enterprise. They’ve researched gluten-free options, brought me gluten-free snacks to study with, and cooked me delicious gluten-free meals. Tortilla soup and corn tortilla quesadillas. Rice and chicken curry. Chicken cordon blue. Chicken katsu made with rice cearal. Ok, a lot of chicken! But, the point is, the meals have been great and I don’t really miss the gluten at all!

APL and RK are the best. I’d never survive without them. APL even found a local restaurant that labels the gluten-free options on its menu! We’re going there after my exam on Monday, which is also our six-year anniversary (SIX?!?!). I’m really grateful that APL has been so enthusiastic about helping me figure out if this diet is for me. I think he likes being able to help me. And I’m down with that too.

On Thin Ice

Recently, I’ve been struggling. All semester I put off reading and note taking hoping that maybe next week I would feel better enough to tackle it. But that “better” week never came. And now there’s a deadline. There’s literally only a couple of days until I’ll be faced with three hour law exams on subjects I’ve only barely managed to pay attention to this semester.

And doing the work now isn’t easy either. There isn’t a lot of time and I don’t feel much better. I feel like my motivation has been on thin ice lately, because as soon as I finish studying for one class I don’t get to take a break. I immediately have to start studying for the next class. So, despite the impending doom of the exams, I’m still finding it hard to concentrate. Or care.

But today I got a reminder that (a) there is more to life than law school and (b) I am still a very capable person. And this reminder literally came in the form of thin ice.

I was leaving the dog park this afternoon when I saw another girl calling after her 10-month-old puppy, Scarlet. There is a lake next to our dog park, and Scarlet had run out on to the ice, chasing some geese. But as she got father away from shore, the ice got thinner and eventually she fell through. Then Scarlet was struggling to get back up on the ice, but she couldn’t do it. We tried to get her to swim to a spot where the ice was thicker, but she still couldn’t get back up. If someone didn’t go in after her, Scarlet was going to drown.

So Scarlet’s mommy started in after her, but the ice cracked under her feet immediately. I told her that she should lie down on her stomach and wriggle out to her and she followed my instructions. She made it almost all the way to the struggling puppy, but when she reached out to her the weight on the thin ice was too much and she fell through too. Then she couldn’t get back up on the ice either, and with her chest in the water and the puppy still struggling, she started to panic.

Without a second thought I took my jacket off and went in after them both. Honestly I am amazed at how calm I was. I guess my ancient lifeguard skills took over. I could see that she was panicking but also that she could reach the lake bottom. She wasn’t drowning. So I told her it was going to be ok. I told her I would break a path through the ice so that we could all get out. And I immediately stomped into the freezing lake, breaking through about ten feet of ice to get out to her and her puppy.

I grabbed Scarlet’s collar and pulled her past her mommy and around me, so that she could swim back to shore through the path I had made. Then I grabbed her mommy by the hand, told her again that it would be ok, and hauled us both out of the freezing lake. We all hurried to our cars to get warm and get home. Scarlet’s mommy thanked me for saving their lives.

There may be some things that I physically can’t do anymore, and there may be some times that I feel like less than myself, but today I remembered that I am still me. I am still good in an emergency. I am still capable of keeping a clear head and doing what needs to be done. And while I wouldn’t wish a swim in a freezing lake on anyone, I’m really glad I was there today.

Grouchy

I am exhausted (cryiared, more accurately). My jaw still hurts a lot and it is making my ears and head and face hurt and my eyes swim and my head too fuzzy to concentrate. (Though the rheumatologist did prescribe me a muscle relaxant to take before bed, so maybe that will help.) My toes hurt. That makes my legs hurt. Last night my feet cramped so badly it brought me to tears. I’ve been in class all day, but I've had very little luck paying attention. I just turned in a 12-page paper that was supposed to be 15-20 pages. Oops. I have three impending law exams and I’ve barely started outlining for any of them. And APL is sick and I don’t have the energy to take care of him and he doesn’t have the energy to take care of me. Plus, because of my weakened immune system, we have to sleep in separate rooms while he’s sick and that makes me feel lonely too.

All of this makes me grouchy. I think I need a hug. But not one that’s going to give me the flu. ;o(

Pain in the Jaw

About a week ago, my jaw started hurting. I don’t know if I am clenching my teeth in my sleep (anxiety dreams much?) or if the pain is related to my RA (a jaw is a joint, right?) or both. But I do know that my jaw hurts. A lot. And it is making me miserable.

My whole head and face hurts. My ears hurt. I can’t focus. My eyes seem to swim around when I try. It hurts to eat. The headache the jaw pain is inducing is almost unbearable (which says a lot, coming from someone who has suffered from migraines for the last ten years.) I can’t concentrate. And, the worst part is, no amount of pain medication seems to do much about the jaw pain. I called the rheumatologist this morning to ask what the hell I am supposed to do about this, but I haven’t heard back from him yet.

In the meantime: I’m supposed to prepare for law exams how, exactly?

I Am Thankful That You Make Me Tea

I am so thankful for APL. I am thankful that he opens jars for me. I am thankful that he makes dinner when I’m not feeling well. I am thankful that he makes me laugh even when I feel like I can’t. I am thankful that he’s patient with me when I take out my emotions on him. I am thankful that it would take me all day to list everything APL does that I am thankful for.

This year for Thanksgiving I am visiting my family in Los Angeles, but unfortunately APL couldn’t come with me. But even though we can’t be together today, I wanted him to know exactly how thankful I am for everything he does for me every day. And I didn’t want him to feel alone in our home without me. So I took a stack of post-it notes and wrote things that I am thankful for and posted them all over our house.

I hope he found them all!

How To Not Cry Over $3,000 Spilled Milk

On Thursday morning, I arrived at the hospital at 8:45 a.m. for my third dose of Remicade. I checked in, they led me to my seat, and they inserted the IV near my left wrist. Then my rheumatologist came in, pulled the curtain around my chair, and we talked about the pain in my feet, my anxiety dreams, my exhaustion, and how I was starting to get discouraged with the whole process of searching for a treatment. We talked about different ideas for getting me feeling well enough to get through finals, he told me what he thought about different RA diet choices, he wrote me a couple of prescriptions, we discussed when to book my next appointments, and then he left me to finish my Remicade infusion.

This time, instead of bringing moms, magazines, or movies, I brought my regulation of toxic substances and hazardous wastes casebook. It’s a thriller, I swear. But I have some reading to catch up on in that class so I thought if I was feeling up to it I might as well try to get some of it done while I was stuck in that chair anyways. So I perused pesticide regulation statutes and hazardous waste cases while attached to the IV with the blood pressure monitor squeezing away every half hour.

Around 11:00 a.m. one of the nurses came by to check on me and her foot squeaked on the floor as she walked by me, like the floor was wet. Curiously, she pulled back the curtain from around my chair only to discover a big puddle of clear liquid on the floor that had been concealed by the curtain. She asked me if I had spilled something. I said no. Both of our eyes quickly darted up from the puddle on the floor to the nearly empty IV bag of Remicade.

It turns out that somehow, during the first two hours that I had been sitting there, the IV machine had primarily been dripping Remicade on to the floor instead of into my veins. The curtain around my chair had concealed the puddle. The nurses were flabbergasted. They said nothing like this had ever happened. They couldn’t figure out why the alarm on the IV pump hadn’t gone off. They couldn’t figure out what to do about the expensive medicine all over the floor (remember, my 20% co-insurance is $600 per infusion.) And so I sat there, attached to an IV of nothing, while they tried to figure out what to do next.

But we realized that there was really only one thing to do. We had to start the infusion all over again. As I looked at the puddle of Remicade on the floor, I realized that I was going to be stuck with the IV for another two or three hours. I also realized that I could get upset about it, and be miserable for two or three hours, or I could cut off that stress response and just try to relax. Take things as they were. Move on. While the nurses flurried around I sat in the chair and took a few deep breaths. Then I smiled and told them I was ok, that I understand that stuff happens, and that I hadn’t really wanted to go to class that afternoon anyways.

The nurse who had hooked up the IV in the first place felt really, really bad about the whole thing, since it was most likely a mistake on her part that had caused the leak. She apologized about 300 times and assured me that I wouldn’t be charged for the first batch of Remicade that was being sopped up with a towel. Since the infusion center only keeps the amount of medicine they are planning to use that day, it took a little while to get a new batch of Remicade. When all was said and done it was noon by the time we started take two of Remicade dose three.

The nurse who felt really bad offered to buy me some lunch, so I took her up on it, partly to make her feel better and also so I would make it through the second treatment without passing out. She brought me a delicious tuna salad sandwich. After eating, I was pretty exhausted, so I gave up on my toxics casebook. But luckily I had my laptop and managed to get on to a bit of a wireless network, so I entertained myself for the remaining two hours.

It was 2:45 p.m. by the time I left the hospital. Dose three took a total of six hours. I was completely exhausted. And I have a huge bruise on my left wrist from having the IV in for so long. But, in the end, I got my medicine and I was proud of myself that I got through the whole mess without getting upset. And the nurses in the infusion center will probably be extra nice to me from now on.