My Great Wall

This morning I woke to find a beautiful email from a complete stranger in my inbox.

She had been looking for info on arthritis on Facebook and stumbled across this blog. She told me that she spent hours reading all of my entries. RA has greatly affected her life as well, so she thanked me for my words and told me that my story had touched her.

In the end, she pointed out that a month and a half had gone by without me updating this blog and said she was worried that my silence meant my health had gone downhill.

Well, for once I have good news!

The reason I have been neglecting this blog is that I have been feeling a lot better and so I have actually been really busy! For the most part, I spent just over two weeks in CHINA with my mom!! And I guess it’s about time that I write a blog post about that trip. ~;o)

To be honest, I was extremely nervous about the trip to China. I love to travel, and I’ve always been really adventurous, but this was the first major traveling I had done since being diagnosed with RA. Mostly, I was worried about my stamina, which is so much less than it used to be. I was worried that I was going to be too exhausted to enjoy myself, that the amount of activities would be overwhelming, and that I would keep my mom from enjoying herself too. I was also worried about how I would keep my ENBREL cold the whole time (since it needs to be refrigerated) and I had a lot of general concerns about my compromised immune system in a foreign country.

But, despite all these worries, I really surprised myself by somehow coming up with a lot more stamina than I ever thought I could. Don’t get me wrong – even though I was the second youngest person on the trip I still got tired far more quickly than everyone else. I found myself going to bed while the rest of the trip stayed up drinking. There were definitely days when I ached a lot – where my feet hurt too much to explore or my fingers hurt too much to use chopsticks. But I think my major accomplishment was that I didn’t let these setbacks stop me from enjoying myself. I just accepted them and tried to enjoy all the little things that I could do. And my mom and I both really enjoyed ourselves.

We started in Hong Kong, where my mom and I spent a couple days wandering around the city and seeing the sights. Then we flew to Guilin where we cruised up the Li River, which had some of the most beautiful scenery with jagged mountains, bamboo forests lining the riverbanks, and hundreds of fishermen on tiny bamboo rafts. On the cruise, my mother tried some snake wine (i.e. wine that literally has a dead snake floating in the bottom.) Supposedly it is an ancient cure for rheumatism, but I wasn’t brave enough to try it. Snakes give me the jibblies!!

Yangshuo was probably my favorite place of all. We saw a light show that featured 300 villagers each navigating their own fishing raft or wearing a costume that lit up in unison. We took a bike ride through the countryside and saw farmers in their rice patties. We even took a cooking class where we visited the market and then cooked local dishes. Though my fingers were bothering me that day and I needed some help with the vegetable chopping, the cooking class was still one of the highlights of the trip!

Then we spent three days on a cruise boat going down the Yangtze River through the Three Gorges. There was good and bad for me when we were on that cruise. The good is that I managed to walk up hundreds of steps in sweltering heat to get to see a temple. I didn’t think I had the physical stamina to do something like that, but somehow I did it. And it was totally worth it because the temple was beautiful. The bad part is that one night I got a horrendous nosebleed. It literally filled the sink with blood for an hour until my mom got freaked out and called the tour guide, who got freaked out and called the boat doctor. Who knows why I got the nosebleed. My immune system sucks? Exhaustion from hiking to the temple? General body failure? Needless to say that was less than a pleasant evening and I was pretty headachy (from blood loss?) the next day. At the end of the Three Gorges cruise we got to see the Three Gorges Dam. Honestly, I have to admit that it wasn’t as impressive as I expected.

From there we flew to Shanghai, where we explored the city and saw some amazing and seriously insane acrobats. Then we took an overnight train to Xi’an – and I actually thought the overnight train itself was a lot of fun. In Xi’an we explored the Muslim Quarter and got to see the Terracotta Warriors, which were amazing. There are thousands of them and they have individual facial features! Then we took another overnight train to Beijng, where we saw the Forbidden City and the Temple of Heaven, both of which were very beautiful.

The last thing planned on the trip was a 6 mile hike along the Great Wall of China. I was really worried about this section of the trip. Would my knees hold up? Would my toes and feet cramp? Would I have enough energy? What would I do if I got halfway through and felt like I couldn’t go on?

But I surprised myself again with my endurance. Don’t get me wrong – it was HARD. First of all, the Great Wall goes up and down and up and down and up and down about three hundred million times. Sometimes you are on really steep steps, sometimes really shallow steps, and sometimes just steep slopes. It’s rugged and rocky and you always have to watch your step. It’s a real workout no matter what kind of shape you are in. Everyone was sweating buckets – even the locals.

I had to take a lot of pain pills to get me through that day. And I do mean a lot, because it was really difficult on my joints. Also, when we got to about mile five, my legs were shaking so badly from the pain in my joints that I could barely walk. I think my mom was worried I wasn’t going to make it to the end for a while. And it must be admitted that while I made it to the end of the hike, I was totally wrecked for several weeks after I got back to the U.S. The night I got home I was jet lagged and couldn’t sleep, but I was in so much pain I couldn’t bring myself to move even to try to make myself more comfortable.

But I did it. I hiked the Great Wall of China.
And I did it only one year after being diagnosed with RA.

If you had asked me a year ago whether I could have taken this trip I would have said absolutely not. I probably would have told you that I would never really travel the way I wanted to again. But I think life has a way of surprising you, and that you really have a way of surprising yourself. I’ve discovered that if you really want something, if it really matters to you, you’ll find a way to make it work. It might not be exactly what you thought you always wanted, but you’ll find a variation that you can really enjoy. Perhaps you even appreciate it more this way.

Like the beautiful email I got this morning reminded me, there are so many simple things in life that I now find pleasure in that I might have overlooked had it not been for my RA. While a trip to China is probably a once-in-a-lifetime experience for just about anyone, for me I think it meant even more because of what it represented to me. Realistically, I know there are probably still more health troubles to come for me in my future – in fact, I have already had some since my return to the U.S. I know there will be more hurdles and more disappointments and more trial and error and more frustration and exhaustion. But I think I have found, at least a little bit, some patience to get through it all while still looking on the bright side.

After all, when things get rough, I just have to remind myself: I hiked the Great Wall of China. I can do anything.

The End of Gluten-Free

After six months of diligently avoiding all gluten, I've decided that my gluten-free journey has come to an end. To be perfectly honest, I don't think the gluten-free diet has had any direct effect on controlling the RA. I've been experimentally eating gluten again for about three weeks and I'm still feeling fine. Since I have so many other health-related issues (and eating gluten-free is a lot of work) I decided not to do it anymore.

But I did learn a lot from my gluten-free experience. It taught me to pay attention to all the food I put in my body. As a result, we have adopted much healthier general eating habits. Being gluten-free also helped me adjust my attitude in order to make the major life changes that have been necessary to adapting to living with RA. The other blog was also a fabulous project for keeping me sane while I was out of school!

For anyone who still is gluten-free, hopefully Gluten-Free From A to Z can still serve as a database when it comes to purchasing gluten-free products.

TOO MANY DRUGS!

This picture is from a single trip to the pharmacy. That’s right – ONE trip. Literally twelve prescriptions. TOO MANY DRUGS! Sucks to have a compromised immune system.

Feeling Frustrated

We just got back from APL’s wonderful family reunion. About twenty members of APL’s family from all across the country got together at his parents’ property near Yosemite National Park. Not only is that part of California particularly beautiful, but we also had a lot of fun. We talked and played games and ate delicious candlelight dinners on the patio under the giant oak trees. One night we had a “Low- and No-Talent Show,” which had us all laughing until our sides ached. I had an amazing time and I am so grateful to be even a small part of such an amazing family. I’m already cherishing the pictures from that weekend.

Except for the pictures of me. I just don’t like looking at myself in pictures anymore. The twenty (ok, let’s not lie, thirty) extra pounds I gained on the prednisone just seem so obvious to me. Particularly in my face, but also in my middle. I’m absolutely not writing this to extract a string of comments telling me how skinny I am. I know I’m not obese. I know I look fine. Actually, it’s not really about how I look anyways. The extra weight makes me feel horrible. And seeing it in pictures makes me remember how horrible my body feels. I am so frustrated with my body that it literally makes me cry.

For the past year I think I have been fighting hard to not hate my body. There are so many things wrong with my body – my immune system, my joints, my blood pressure, my thyroid, my energy – it would be really easy to hate my body. I know the vast majority of these things are not my fault, but the potential solutions to some of these issues take a lot of patience to find, which hasn’t exactly been easy to maintain for such a long time.

Take, for example, my visit to the doctor yesterday: The last time I saw the doctor, she decided that the prednisone had elevated my blood pressure too much, so she gave me some drugs for hypertension. Yesterday I went to check in with the doctor about my blood pressure and also mentioned that I had a hacking cough for about a week. Turns out the cough was caused by the hypertension meds, which I was only taking because of the prednisone, which I was only taking because of the damn RA! So, although the prednisone helps with my pain, it also makes me gain weight, which gives me hypertension, which results in a hacking cough! Frustrating!

Finding the right combination of meds is a long and frustrating process. And I’ve tried so hard to be patient. For a year I have really been fighting to stay positive about my body and try to keep myself from hating my body. It really hasn’t been easy, especially on days when everything hurts so much I can’t help thinking about the pain while doing ordinary tasks.

I know this is going to sound horribly shallow, but seeing pictures of myself where I look as horrible as I feel makes it extremely difficult to stay positive about my body as a whole.

I know I can lose the weight. I know that this particular body flaw is not a permanent one. But the prospect of loosing the weight is also a quite overwhelming. Although I’d like to think I eat pretty healthy most of the time, the prednisone also makes me hungry, which leads to overeating I’m sure. And to lose weight I obviously need to exercise, but this can be an extremely daunting process when my body hurts or I feel fatigued. For example, while we were at the family reunion most everyone took a 4-mile hike from Glacier Point down into Yosemite Valley, but because my toes were cramping that day I was regulated to shuttle driver. How am I supposed to be active enough to loose 30 pounds if I can’t even take a walk?

I have reached a point where I am forced to admit: sometimes, I really hate my body.

Drowning in Doctors & Knee-High in Needles

I spend WAY too much time going to the doctor and getting stabbed with needles.

Last Friday I was at Student Health twice in the same day. I had to get blood drawn for a thyroid test. Luckily, it was my favorite lab man. He knows me pretty well seeing as I’ve been in his lab twice a month for the last year. He always makes me smile and it never hurts when he draws my blood. So I won’t say that experience was pleasant, but it wasn’t bad either.

Doctor Count: 1 visit/1 day.
Needle Count: 1 stab/1 day.

But then I went to the pharmacy to pick up three prescriptions, one of which I was going to run out over the weekend. I told the girl at the pharmacy that there should be two on the shelf and one in the fridge. She said yes and I paid a zillion dollars for my ENBREL and left. It wasn’t until I got home that I realized one of the prescriptions was missing. And, of course, it was the one I was going to run out of over the weekend. So I had to go all the way back to student health and pick it up.

Doctor Count: 2 visits/1 day.
Needle Count: 1 stab/1 day.

On Monday, I had an appointment with the travel nurse for my upcoming trip to China. What would have been a 15 minute appointment for most people turned into an hour and a half debate about what precautions would best protect my compromised immune system and what drugs could be given to me that wouldn’t react with my 15 other medications. (I’m not exaggerating about the 15). For example, I can’t take the oral typhoid vaccination because it is a live vaccine and my immune system can’t handle that. So I had to get the typhoid shot. I also got my first Japanese Encephalitis shot.

Doctor Count: 3 visits/4 days.
Needle Count: 3 stabs/4 days.

On Tuesday, APL drove me 40 miles each way to the University Hospital where I met with a doctor in the rheumatology clinic to get a second opinion about my treatment. I actually really like and trust my current rheumatologist, but several people (including my dad and my boss) have encouraged me to get a second opinion. Since it has been a full year since my diagnosis without huge amounts of improvement I guess a second opinion is valid at this point. The doctor was a very nice man. He went over the onset of my disease and my treatment plan up to this point and confirmed that he would have used the same methods of treatment. To be certain, he took x-rays of my hands and feet and had some blood work done. Annoyingly the lab technician drew my blood from the exact same spot on my right elbow as Student Health did on Friday. Although the hospital appointment went quite well, we hit hail and traffic on the way home. The whole expedition ended up taking over five hours.

Doctor Count: 4 visits/5 days.
Needle Count: 4 stabs/5 days.

Today I went in to see my regular doctor to find out the results of my thyroid test and to answer some of the questions that the travel nurse couldn’t answer. My thyroid is normal and the doctor thought of another drug I could take in case I get sick in China that wouldn’t conflict with my other 15 prescriptions. So that was good. However, the doctor then got very concerned about my high blood pressure. For one thing, I have what they call “white coat hypertension,” which means I get nervous when I go into the doctor’s office and the first time they take my blood pressure it is almost always high. Usually they take it a second time and it comes down again.

But today I guess it didn’t come down enough, and the doctor started looking through my history and determined that my blood pressure had a general trend of being too high. So I went off to the lab again to get still more blood work. Sadly, my favorite lab man wasn’t there and the girl who took my blood took it from the exact same spot as Tuesday and Friday. I now have a bruise on my arm large enough to look like I abuse drugs. I also had to give a urine sample and pick up a prescription of blood pressure medication. The doctor wanted to start me on it right away so she could see how I respond before I leave for China.

Doctor Count: 5 visits/6 days.
Needle Count: 5 stabs/6 days.

Tomorrow, it is time to stab myself with another ENBREL dose.

Doctor Count: 5 visits/7 days.
Needle Count: 6 stabs/7 days.

On Monday we are leaving to drive to California to go to APL’s 4th of July family reunion. I am really looking forward to the trip. However, before we can even leave town I have to go back to Student Health for my second Japanese Encephalitis shot.

Doctor Count: 6 visits/11 days.
Needle Count: 6 stabs/11 days.

Next Thursday it will be time for yet another ENBREL stab.

Doctor Count: 6 visits/14 days.
Needle Count: 7 stabs/14 days.

As soon as we get back to town, I have to go back in to see my regular doctor to see how I am doing on the blood pressure medication.

Doctor Count: 7 visits/20 days.
Needle Count: 7 stabs/20 days.

Then it’s time for another ENBREL needle stab.

Doctor Count: 7 visits/21 days.
Needle Count: 8 stabs/21 days.

Then I have to go back to Student Health again for my last Japanese Encephalitis shot.

Doctor Count: 8 visits/22 days.
Needle Count: 9 stabs/22 days.

Then, yet another ENBREL dose before we leave for China.

Doctor Count: 8 visits/28 days.
Needle Count: 9 stabs/28 days.

Who on earth goes to the doctor eight times in a single month? Or gets stabbed with a needle at least nine separate times in a month? Sick people, that’s who.

I know it’s supposed to make me feel better, but actually it’s quite exhausting.

Japanese Encephalitis

I spent 45 minutes today talking to the nurse at Student Health about Japanese Encephalitis. JE is a serious infection caused by a virus and transmitted by mosquitoes. “Encephalitis” means swelling of the brain. Lovely. JE can cause headache, high fever, neck stiffness, stupor, disorientation, abdominal movements, occasional convulsions (what the heck does "occasional" mean? Like every five minutes? Or once a week?), coma, and paralysis. One in four cases of severe JE infection is fatal. Awesome.

The reason this is relevant to me is that my mom and I are going to China in July (more on this in a future post, I promise.) JE occurs in certain rural parts of southern China. It’s not like I’m going to be spending months crawling around in rice patties or anything like that. My mom and I are taking a pretty nice tour and we'll only be in China for two weeks, and only part of that time is in southern China. And, if I take precautions to limit my exposure to mosquito bites - bug spray, long sleeves, etc – the risk of contacting JE is actually quite low. But, seeing as I seem to get everything that is gettable (I’m sure you all remember the boob wound saga of 2009, the time a common cold beat the crap out of me, the rash that appeared just yesterday), I have a reason to worry about JE.

Luckily, there is a vaccine to prevent JE. It comes in three doses. Unluckily, it is expensive. Each dose costs about $175. And obviously my insurance doesn’t cover it. What is it with me and the expensive meds? My out-of-pocket medical expenses are ridiculous.

The nurse and I spent a good 45 minutes debating whether or not it was worth it for me to get the vaccine. Ultimately, we decided that the risk of JE was really quite low, but that with my compromised immune system it probably isn’t worth taking the chance. I mean, saving $600 doesn’t do me much good if I’m dead.

However, note to self: I need better health insurance.

Sunscreen Fail

You’re probably getting tired of hearing me say this (trust me, I’m getting tired of saying it) but I’ve got another rash all over my body. Little red dots everywhere.

This time it’s on my thighs, on my back, and in my cleavage. APL and I think it might be from a spray sun screen I used a couple of times over the last few days, as the rash is basically appearing everywhere that I got sprayed. On the one hand, I guess it’s useful to know where the rash may have come from. On the other hand, I still haven’t got the hang of my body being sensitive to anything and everything. I mean, I put on sunscreen to be responsible and protect my body, but now the thing I used to protect myself is attacking me? Sucks. A lot.

Fat Face

One thing that usually cheers me up when I am feeling down is looking at photographs. Since you generally take photos when you’re having a good time, looking at photos always reminds me of all the things I have to be happy about. Also, in 2007 I started the fun tradition of making a slide show of the whole year, with a couple of pictures from each month. So while I felt like the majority of 2008 sucked (a lot) making the slide show for 2008 helped me realize that a lot of good things still happened.

Lately, however, I’ve discovered that looking at pictures just doesn’t make me happy anymore. I don’t like looking at myself in pictures because I look fat. I feel fat. I am fat. And I can handle a little jiggle in my belly and a little meat on my thighs. That’s not the problem. What has really been bugging me is that my face is fat. My cheeks are fat and my neck is fat. I feel like I have a double chin.

Before recently, I never spent any time worrying about my weight. I love fresh foods so I generally eat pretty healthy without much effort. And I used to be so active – water polo, swimming, hiking, snowboarding – that getting enough exercise was never really an issue for me. I never really had to think about being active before. I was just active.

However, over the past year, the pain of my RA has caused my activity level to decrease dramatically to the point where getting on the exercise bike for even half an hour is a big accomplishment for me. And, as a result, the pounds have been slowly creeping on to my body due to inactivity. I keep telling myself that this isn’t the time to worry about a little bit of extra weight. Just get the pain under control, I tell myself, and then I can be active enough to get the weight off.

But, when my rheumatologist decided it was time to stop the Remicade I was in a lot of pain. So, while we were between treatments and I was worried about pain while traveling my rheumatologist tripled my usual dose of prednisone. So I was on a really high dose of prednisone for about three weeks between Remicade and ENBREL. I am only slowly being able to lower this dose now. When I went on the prednisone, I knew, at least vaguely, that it had the potential to cause weight gain, but I was so miserable that I hardly cared.

Now I have learned the hard way that prednisone not only causes weight gain (from encouraging calorie consumption and increasing fluid retention) but prednisone can also lead to a redistribution of body fat to places that are undesirable. Turns out that one of those places is THE FACE! This can make even a small amount of weight gain seem intolerable and I can see why! I can’t help thinking: would I have agreed to so much prednisone if I had known it was going to give me fat face?

It’s hard to say. There are so many ways to be unhappy about the state of my body, and it’s frustrating that fixing one part always seems to mess up another part. I can take methotrexate to keep my joints from being destroyed, but it might give me cancer. I can rest when my everything hurts, but then I gain weight from being inactive. And I can take prednisone to help with the pain and give me the ability to be more active again, but then I get fat face!

While I feel like the ENBREL might actually be working (knock on wood, please!) the whole fat face situation is really messing with my self-esteem and my mood in generally. And, anyhow, how on earth do you loose face fat?

Except for Scorpions, Florida Is Fun

APL and I just returned from a family vacation with my dad’s side of the family. My uncle has a house on St. George Island, which is off the panhandle of Florida, and my family gathers there for vacation/family reunion every couple of years. This year we got to see my dad, my uncle (obviously, as it is his house), two aunts (my dad’s two sisters), my sister, my brother, and my brother’s girlfriend.

Before we went down to the island we went to a show at this tiny blues club near Tallahassee. It was down a dark dirt road under a huge tree with Spanish moss all over it. It was a Deep South cultural experience, especially when the old black man with one tooth on the bottom who worked at the bar outside by the bonfire asked me to dance. Obviously I danced with him. The whole family had a lot of fun.

After we got down to the island we had another Deep South cultural experience: the annual St. George Island Mullet Toss. While a mullet is an attractive hairstyle (of which we certainly saw a few) it is also a fish. A “mullet toss” is a competition in which the participants literally attempt to throw a fish as far as possible. We saw two categories of competition. One was regular burly beefcakes literally hurling fish as far as they could. The other was the “mechanical” category, in which teams created huge cannons out of pvc pipe, propelled by aquanet hairspray, to launch the mullets as far as possible. It was pretty epic.

After our southern excitement, we spent the rest of the vacation relaxing. We sat in plastic chairs in the surf, swam in the Gulf, played with my uncle’s adorable dog Jake, paddled on the sea kayak, flew a kite, and drank beer. Ok, obviously I didn’t drink beer because clearly there’s no such thing as sorghum beer in the South. I drank rum. And sangria. Actually, the whole family drank a lot of sangria. In the evenings we would sit on the porch, watch movies, play poker, fruitlessly attempt to beat my uncle at scrabble, eat home-cooked meals, and drink.

After four paragraphs of description of my vacation with no mention of scorpions, you are probably wondering about the title of this post and the picture. Turns out I have really bad luck with wildlife on St. George Island. Last time we were there I got stung by a jellyfish. It left a huge red gash across my belly that took months to fade and my little brother peed on me. Ok, technically he peed in a bottle and poured it on me since we’ve all heard that pee helps with jellyfish stings. And everyone always asks me: did it help? Honestly? I have no idea. That sting really hurt. Who knows if it would have hurt more sans pee?

But back to the scorpion. Aside from my uncle’s bedroom, there is only one other bedroom in his house. That bedroom has a queen bed in it. Otherwise there is a bunkroom under the house with four bunks, a pull out couch, and a lot of air mattresses. This time my dad insisted that APL and I take the bedroom and that he would sleep on the couch. He wanted to make sure I got a good night sleep. Since I got diagnosed, my dad sometimes treats me a bit like an invalid. Though I know his actions are out of love and concern, it can sometimes be frustrating. But, in some instances, I really appreciate it (a) because sometimes I wish more people recognized how much I am struggling and (b) because I actually really do need to get a good night sleep to feel better.

However, our first night on the island I got anything but a good nights sleep. We all went to bed late. Then I was reading in bed. APL had fallen asleep. I turned out the light and was trying to get comfortable when I felt a sharp pain in one of my legs. I turned the light back on, thinking I would find some kind of sticker or burr in the bed. I found nothing. I thought maybe I had scratched at my mosquito bites too hard and that’s why my leg stung. But as soon as I turned the light back out and lay down I felt the same sharp pain on the side of my arm. At that point I jumped out of bed, woke APL up, and we got a glimpse a scorpion scurrying across the bed!

While APL tried to find something to kill or trap the scorpion (he figured we might need to know what kind it was when we took me to the hospital) I ran to wake up my dad. He was sound asleep, so I shook him gently and said: “Daddy, there’s a scorpion in our bed and it stung me twice.” To which he replied “WHAAAT?” and leaped directly from sleep into a standing position. After getting me ice to hold on my wounds, my dad and APL hunted the scorpion. It was 3am but they tore the bedroom apart, flipping the mattress, pulling books of the bottom shelf, dragging stuff out of closets. They never found that scorpion.

Luckily for everyone involved, we didn’t end up having to go to the hospital. APL consulted his trusty iPhone and discovered that scorpions in Florida didn’t have life threatening stings. And I didn’t end up swelling or feeling gross or having much of a reaction. But man did those stings hurt!!! With my track record, next time we go down there I better watch out for stingrays and snakes!

I've Already Been Stucken

ENBREL dose #4 happened this morning. I’m getting pretty good at this whole stab myself with a needle thing. At first I thought once a week wasn’t going to seem like a lot, but now somehow stabbing myself with a needle once a week seems to make the weeks go by faster. I mean, didn’t I just stab myself the other day?

Anyhow (please knock on all forms of wood in your general vicinity), although I’ve been feeling a bit exhausted from our spontaneous road trip I have to say that I haven’t been noticing as much specific pain in my joints lately. So perhaps this ENBREL drug is working? I’m keeping my hopes up for it.

In other news, check out the ENBREL promotional picture in this post. “With ENBREL, you may be able to hang on to a pole like this lady. I mean, maybe your hands will stop hurting long enough to at least take a picture like this. Maybe. Your results may vary though, so this may not be true at all.” Yay covering your ass, ENBREL.