Tuesday, March 31, 2009

Ten Miles With The Biggest Loser

I have a sort of embarrassing confession to make. It has two parts:

Confession Part One: I’m totally sucked in to The Biggest Loser. One night, when I was having trouble sleeping, I watched an episode of The Biggest Loser on Hulu. I know reality TV is pretty much horrible, but I got sucked in. Now I watch The Biggest Loser every week.

Confession Part Two: Today The Biggest Loser actually inspired me to exercise. Because of the snow and my headache, I haven’t been able to come up with the energy to get myself back to the pool. But today, while I was watching The Biggest Loser, I couldn’t help thinking: you know, if someone who is over 200 pounds can run a half marathon and tow a car half a mile, then me and my creaky joints and my headache can certainly ride an exercise bike for a little bit.

So, while I was watching TV, my headache and I rode the stationary bike for 45 minutes. Although I took breaks and only rode for 15 minutes at a time, I still rode about 10 miles total while I watched The Biggest Loser. And that is certainly better than doing nothing at all!


Sadly, I am no stranger to headaches. In fact, before I started to deal with RA, I spent years dealing with headaches. The headaches started in high school and got worse in college. While I was in college I sometimes had headaches that literally lasted for months at a time. And what made it worse was that it wasn’t a typical migraine. I never got nauseous, I was never sensitive to light, and I never had an “aura.” I had something in between a textbook migraine and a tension headache, and no one had any idea what to do about it.

I went to every doctor and specialist under the sun. The neurologists gave me cat scans and sent me through a lengthy trial and error drug process (sort of like the one I’m undergoing right now for RA). We tried migraine prevention drugs, migraine elimination drugs, anti-depressants, anti-seizures, steroids, even blood pressure medication. Some of those drugs made my heart beat too fast, made it hard to breathe, and made my hair fall out. None seemed to solve the headache problem. So I tried acupuncture, massage therapy, pain management therapy, and even went with my mom once to see a “holistic healer” that I called a witch doctor because she made me drink this potion of juniper for several weeks. It was foul.

None of those solutions really solved my headache problem. So I stopped taking headache drugs all together (except for the occasional Excedrin) and learned to ignore my headaches as much as possible and take it easy when they were too hard to ignore. I worked on reducing my stress level and focusing on being happy, which seemed to help. Over the past couple of years my headaches, while not gone, have actually been much improved.

But today I am a bit frustrated to find myself with a headache for the fourth day in a row. Ordinarily a headache wouldn’t bother me too much since I am so used to dealing with them. But on top of the joint pain, soreness, fatigue, and the bummed feeling I’ve been having lately the headache is enough to make me pretty grumpy. Unfortunately, I think it’s another one of those chicken and egg things - I’m probably getting a headache because I’m tired and bummed out, and then the headache makes me more tired and bummed out, and then the headache gets worse because I’m even more tired and bummed out!

How do I break the cycle and make the damned headache go away???

Thursday, March 26, 2009

Snow Day!

Today my plan was to go for a swim, but I woke up to find that a blizzard had moved in overnight. Still, I made a commitment to go, so I was all ready to pull on my gloves and boots and the dig the car out of a snow bank when I found out that APL had been in an accident on his way to work this morning. Apparently a girl spun out across two lanes and even though APL saw it happen and was driving slow he just couldn’t stop in time. Luckily no one was hurt, but our brand new Subaru is a bit banged up. So that sucks. But I’m glad that APL is ok.

However, since the snow doesn’t seem to be letting up, and I found out that campus has actually closed because of the conditions, I decided not to tempt fate and go out when I really didn’t need to. But I made that commitment to exercise so I rode our stationary bike for a full 30 minutes! A total of 6.6 miles. Perhaps not the hugest accomplishment in the world, but it felt big to me. I’ve exercised so infrequently over the last few months that my legs felt like jello when I was done, but at least I did it! And hopefully the snow will let up enough for me to get to the pool tomorrow.

P.S. The picture is of the snow this morning on our spa and our brand new patio furniture, which we bought because it has been 70 degrees for weeks. Nice enough, we thought, to have dinner outside sometimes...Now there's even more snow on them!

Whooo is Amazing? My Cousin!

I just got a really fun care package from my cousin KF in Ohio. She said that it sounded like I was pretty bummed lately and that she wanted to send me a little smile. And she did! She sent me this adorable crochet owl that she had made. He is so soft and cute and bright – the perfect addition to my desk to remind me to keep my spirits up! Especially on a snowy day like today! (KF actually sells her crochet amigurumi on etsy – you should check out her shop!)

She also sent something from down memory lane. When I was in second grade, I used an old Apple IIGS computer program to make a “Magnificent Monsters” coloring book that we printed out and sent to people for Christmas. The pages were full of monsters I had designed on the computer and named after friends and family that I sent the book to. Each one came with a rhyme. For example, KF’s monster said: KF drank a glass of juice and then she turned into a moose. The book gave me and APL a good laugh.

And while I loved the presents, I think I might love the card best of all. The front of the card says:
Awesome. Sounds like just what I need! Thanks so much for thinking of me, KF! It made my day!

Wednesday, March 25, 2009

Therapy Day

Yesterday, I had a therapy day.

My day started with my first visit to a therapist at the student health center. I have to admit that I’ve never been wild about the idea of seeing a therapist (not just about RA, but in my life in general). But when I was sick and went to see the doctor last week, I guess I seemed pretty discouraged so she suggested I give it a try since it’s covered by my insurance anyways. What did I have to loose? I decided she was right. I’ve been willing to try all kinds of other weird things – fish oil, flax seed, noni juice, green tea, ointments, mindfulness meditation – that I can probably afford be open minded enough to give therapy a try. Not to mention that having someone else to talk to would probably help take some of my unhappiness burden off APL and RK, which I would like.

However, as reluctant as I was to try seeing a therapist, I have to admit that I was even more reluctant to actually admit on this blog that it was a method of treatment I was going to try. I probably need a therapist to help me deal with the fact that I don’t want to admit I need a therapist! But since I’ve felt honest enough to make you guys deal with stories of boob wounds and yeast infections, I guess I should be able to admit that I’m seeing a therapist. After all, this is my story about dealing with RA, and my emotional journey is a big part of that. If you’ve been reading this blog, I’m sure you can tell that I haven’t been the happiest camper for the past couple of months. And, in the interest of full disclosure, my rheumatologist already put me on an antidepressant last semester, so I obviously still need some help.

The therapist turned out to be a really nice young guy and I felt pretty comfortable talking to him. He took a lot of notes but told me that none of his notes were secret – that I could see his notebook any time I wanted – which I liked. The first session was more just getting to know me and my problems, so he asked some questions and didn’t provide too much input. I’ve scheduled another session and I’m going to try it with an open mind.

After that therapy session, I rewarded myself with some more enjoyable therapy. I started with boyfriend therapy and had a lovely lunch with APL. Then I moved on to some retail therapy and went shopping for a dress for my friend AJ’s wedding in May (but sadly I did not find one yet…). Then I had some massage therapy, which I hadn’t done in a while and actually managed to make my body feel a little bit better. I finished the day off with some Scrabble therapy – playing my favorite board game with some great friends – and I even enjoyed it when APL kicked my butt at it!

So maybe therapy isn’t such a bad thing after all…

Saturday, March 21, 2009

Swim WIN!

Swimming has always been my exercise of choice. I’ve loved to be in the water since I was a baby and I started playing water polo when I was 13. I was so delighted last spring to be able to play water polo again, and so disappointed that I wouldn't be able to play this year. Nothing makes me feel as good as gliding through the water, or flexing slightly to keep myself afloat, or just absorbing the sound of being underwater.

I’ve been trying for weeks (ok, ok…months) to get my act together and get in the pool. Swimming is also the exercise of choice for people with rheumatoid arthritis, because it is low impact on your joints but still keeps your body moving. But with how bummed out and gross I have been feeling lately I just couldn’t seem to muster the energy. I knew if I could just get myself into the pool it would make me feel better, but the energy necessary to get my stuff together, drive to the gym, find a parking spot, get into the locker room, get the swimsuit on, force myself into cold water…it just seemed like more energy than I had before I even got to the point where I was supposed to exercise.

To make matters worse I no longer have access to the University Rec Center because technically I am not a student right now. I can buy a “affiliated student pass,” but it’s sort of expensive and only lasts through the end of May. So I’ve diligently researched other options – Boulder actually has really good community rec centers – but the added hassle of having to buy a membership when I got to the pool just seemed to diminish the chances that I had enough energy to actually get there and get in the water.

But this week I was feeling pretty good on Thursday (which is probably a good sign since it was the day after my fifth Remicade infusion). So I decided to just make myself go for a swim. It turns out that the South Boulder rec center is literally five blocks from my house. I bought myself a 20-pass punch card and got myself in the water.

It felt wonderful. I only had energy for about 20 or 30 minutes of swimming, but I was really glad I did it. I felt so good and energized afterwards that I made a lovely dinner of salmon, asparagus, quinoa, and white wine that APL and I enjoyed on our back patio.

I’m going to try to get back to the pool once or twice a week. It wasn’t that hard, after all. And in the end it was worth it because I definitely felt better.

So someone please remind me of this post if I start to slack again? ~;o)

Thursday, March 19, 2009

Harry Potter & Me (And the IV)

Since the purpose of Remicade is to confuse your immune system, you aren’t allowed to get an infusion of Remicade if your immune system is currently trying to fight off an infection or illness. So when I got sick last week, I was pretty concerned that I wouldn’t get well in time to get my fifth dose of Remicade.

Luckily, the doctors decided that my cough had subsided enough and I got my fifth dose yesterday. Although it took them two tries to place the IV, the rest of the treatment thankfully went off without a hitch. I watched Harry Potter and the Chamber of Secrets while I was there. I love Harry Potter! It always cheers me up.

My rheumatologist also came down during my treatment to examine my joints and talk about my treatment. This was my second dose of Remicade on the increased dosage, but we decided that it was hard to say whether the increased dosage from last time had actually helped. The past few weeks have been so miserable, what with the saga of my boob wound, getting sick, and having trouble getting out of bed, it’s no wonder I haven’t been feeling that well physically or mentally lately. So I’m going to try to pay close attention to how I am feeling physically for the next few weeks to see if the extra Remicade is making a difference.

However, even with the extra Remicade, my rheumatologist concluded that I’m still experiencing moderate disease activity. So we’re going to try adding another medication: doxycycline. It’s actually an antibiotic, but apparently when taken regularly it can help with the treatment of RA. So we’re going to try that for a couple of months. However, it can increase my risk of [WARNING: The remainder of this sentence may contain too much information for you] yeast infections, so if I get a persistent yeast infection then this treatment is a no go.

I’m also happy that the rheumatologist decided to decrease my dose of methotrexate, as that stuff seems to make me really tired and I’ve had so much trouble with fatigue lately. So, all in all, I’m pretty happy with how the visit went. And it’s nice to have some relatively good news, I think.

Tuesday, March 17, 2009

Happy St. Patrick’s Day!

Many thanks to my good friends PL&AN who invited me to coffee this morning and gave me an excellent reason to get up, get out the door, and celebrate St. Patrick’s Day! I'm really grateful to have you guys in my life. ~;o)

Monday, March 16, 2009

Sleep Schedule Fail

On Tuesday I called the doctor to see how I ought to be handling a cold with my compromised immune system. They didn’t call back. On Wednesday I called again. By the time they called me back on Wednesday night and told me I should come in, I couldn’t get an appointment until Thursday afternoon. When I finally went in the doctor did a strep test and a CBC (complete blood count) and determined that it really was nothing more than the common cold.

But having even just the common cold on top of the aches, pains and fatigue of RA has really sucked and, I think, brought me to my lowest point yet over the last delightful ten months. I feel just awful – both physically and mentally. My whole body hurts, I have literally zero energy, and I’ve been pretty bummed out.

As a result I’ve been sleeping a lot. And we’re talking college-style sleep-through-half-the-day sleeping. Only in college I’d sleep through the whole morning because I stayed up until 3 or 4 am the night before. Now I’m going to bed around 11:00pm and still sleeping until after noon. Over the weekend I slept until after 1:00pm both days.

APL and I decided that I might start feeling a little bit better if I could get myself on a more regular sleep schedule. So we decided to set me an alarm this morning. Last night we went to bed after 1:00am, because APL went to a concert and I stayed up watching a movie and waiting for him to get home. (Surprise, surprise I didn’t feel well enough to go to the concert with him.) So we decided to start slow. We set my alarm this morning for 11:00am.

When it went off, I proceeded to hit snooze for an hour. At noon, I looked over at the alarm and decided to get up. So I turned the alarm off. Then next thing I knew it was 2:15pm and I was still in bed. I’m blaming it on the combination of the dose of methotrexate and NyQuil I took last night, but man. Talk about failing in my attempt to get on a normal sleep schedule.

The sad thing is that it doesn’t really matter that I slept most of the day away, because I didn’t have any plans anyhow. I guess I can always try to get up at a reasonable hour again tomorrow.

Tuesday, March 10, 2009

The Uncommon Cold

I know this blog has turned into a big complain-a-thon lately, and I'm honestly sorry about that, but my life is generally pretty crappy right now so please bear with me. If you’re still reading this: thank you. I really do appreciate the support.

Right now I have a cold. My nose is stuffed, my throat is sore, my head is pounding, and I can’t stop coughing. I know the common cold is usually nothing to be afraid of, but (a) my immune system is all messed up to begin with and (b) I’m on all kinds of drugs that purposefully mess up my immune system even more.

So having never had a cold at the same time as having a weakened immune system, I called student health this morning to ask if there was anything special I should be doing. Do I need to come in? Should I be taking something? Can my immune system handle this? I talked to a nurse who said he’d talk to the doctor and call me back.

Of course, he never called back.

So, on top of already feeling like my body has been run over by a steamroller from the RA, I’m now coughing my lungs up as well. And if I weren’t so exhausted by the whole thing I think I would be pretty worried because I don’t know whether my uncommon body is actually capable of fighting off this common cold. And let me tell you that being sick on top of having RA is doing nothing for my spirits.

My immune system needs a vacation.

Wednesday, March 4, 2009


Today I forced myself to go on a hike. Or, more accurately, RK and I forced each other to go on a hike. (Thanks for that, RK!) And, to be fair, it might not have qualified as a “hike” for people besides me who are actually in shape. But we did walk on a trail for about an hour. Some of it was even uphill!!

Are my feet absolutely killing me right now? Well….yes. Yes they are.

But did I leave the house today, actually do something with myself, and enjoy the gorgeous afternoon? Yes. Yes I did.

So I’m going to call it a win. I'm also keeping my fingers crossed that it helps me sleep better tonight and that the pain won't be too bad tomorrow. Wish me luck!

Tuesday, March 3, 2009

The Chicken Or The Egg

In addition to the emotional ups and downs I’ve been having lately (ok, perhaps mostly downs), I feel like I’ve had a little bit of a physical setback too. My hands and feet have been hurting for a couple of weeks. Perhaps not as much as they were hurting when I first got diagnosed, but more than they were hurting a month or so ago. So it feels a little like going backwards towards pain instead of forward away from it.

It’s a really frustrating kind of pain because it isn’t exactly what you would call horrible. I can still basically do everything I want to do, and it isn’t enough pain to make me call the doctor and complain when I am going to be seeing him pretty soon anyhow. But it is sort of a constant ache that makes doing things rather less pleasant than they would otherwise be. Which is unfortunate, because it sort of puts a damper on all of the activities I have thought of to cheer up my mood. Working on my gluten-free blog for too long hurts my hands. Trying to hike or walk to get my body more active and feeling better hurts my feet. And when I try to cook, my hands end up hurting from the chopping, stirring, and mixing.

It’s sort of the chicken or the egg thing. I don’t know which came first – the extra hurting in my hands and feet or the sad and discouraged feeling I’ve been moving in and out of for a couple of weeks now. Either way, the two problems seem to sort of reinforce each other and I’m not sure how to break the cycle.

I’d like the chicken and the egg to go away now please!!!