Thursday, June 25, 2009

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.

Tuesday, June 23, 2009

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.

Sunday, June 21, 2009

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.

Saturday, June 20, 2009

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?

Friday, June 19, 2009

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!

Thursday, June 11, 2009

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.

Tuesday, June 9, 2009

So Then We Drove 1,500 Miles…

APL and I just got back from our spontaneous road trip. We had a really wonderful time. We had no plan whatsoever; we just went wherever the roads took us. But we have always really liked going to National Parks and Monuments. In fact, we’re pretty nerdy about it – we have one of those National Parks Passports where you can collect stamps from all the different places you have been. And we’ve been to a bunch of these sites. On this trip we hit eight NPS sites:

(1) Curecanti National Recreation Area
(2) Black Canyon of the Gunnison National Park
(3) Mesa Verde National Park
(4) Yucca House National Monument
(5) Hovenweep National Monument
(6) Chao Culture National Historic Park
(7) Pecos National Historic Park
(8) Fort Union National Monument

We also went to Four Corners National Monument, which doesn’t get counted in the above list because it is run by the Navajo Nation rather than the National Park Service.

We drove 1,500 miles. Now there are only two NPS sites in Colorado that we haven’t been to. Those are on the list for the next spontaneous road trip!

NERDY UPDATE: We have now been to a total of 77 national sites. I got our passport out and counted!

Thursday, June 4, 2009

Stick It To Me Again

Right after I graduated from college, APL and I spent three months camping across the whole country. It was pretty much the best time of both of our lives because we had no responsibilities and no agenda. We just did whatever we wanted whenever we wanted. If we were driving down the road and we saw something that looked interesting, we stopped if we wanted to. If it took us an extra day to get someplace, it didn’t matter. If disaster occurred (the wheel fell of the trailer, the car broke down, a hurricane, food poisoning) it didn’t matter because we were together.

So when APL suddenly found himself with 40 extra hours of free time every week, the first thought that occurred to us was that maybe we should hitch up Donna, throw River in the car, and get out of town for a few days.

We literally would have left right away, but then I realized that we couldn’t leave until Thursday because I needed to wait for my next injection of ENBREL to arrive. (I totally called it that this drug would make car trips a pain!) We know that this month’s supply is supposed to arrive sometime today, but we don’t know when. So we are basically sitting around, waiting until I can stab myself with a needle, and then we can get out the door to who knows where!!

In other news, I have a really dark purple bruise from where I stabbed myself with a needle last week. Which of course means that if I get one new bruise every week, but it takes about three weeks for each bruise to disappear, ENBREL is going to leave my thighs looking like someone beat the hell out of me. But (please knock on every piece of wood within reach) that horrible knife-in-the-hip pain I was having about a week ago seems to have faded away, so I’m keeping my fingers crossed that all the bruises will be worth it in the end.

UPDATE: I wrote the above post at 11:00am. It is now 2:30pm. The car is packed, Donna is hitched up, and we are ready to go. But we are still waiting for my stupid needle to arrive. Grrrr....

ANOTHER UPDATE: It is now 3:30pm and still no needles!! I mean, I know they are sending me the first month for free and saving me $800, and I am grateful for that, but APL and I want to go on an adventure! Not sit in the house doing nothing!! Accio needles! Now, please?

YET ANOTHER UPDATE: It is now 4:40pm. I'm starting to get bummed out.

FINAL UPDATE: It is now 4:44pm and the needles have arrived, I have stabbed myself for the second time, and we're FINALLY out the door!!! Yay!!! (P.S. that needle still hurt pretty bad for 15 seconds. Bleh.)

Wednesday, June 3, 2009

Thankless Chores

I know this is a bit off-topic for this blog, but I’m thinking about it so I thought I’d share: it sucks to do thankless chores.

Because (a) a clean house matters to me more than it does to APL and (b) up until yesterday I’ve been the one with more time, I usually take care of a lot of house-cleaning. Particularly the icky, nitty-gritty, cleaning the dirt and filth part.

But although I put a ton of effort into cleaning, I don’t feel like anyone except me really notices it. And it’s not just on APL – a bunch of people spend time in this house. But does it matter to anyone else if the house is clean? Probably not. For example, I just spent a full 45 minutes scrubbing the filthy, grease and food-stained stovetop clean. I scrubbed until my stupid arthritic fingers hurt. But will anyone notice? Will anyone care?

Conclusion: cleaning sucks. Especially when you have RA.

Also: being an adult and having to worry about things like cleaning a stovetop and health insurance and getting laid off sucks too.

UPDATE: To be fair, APL did thank me for cleaning the kitchen. He gets an A, but cleaning still sucks.

Tuesday, June 2, 2009

On A Tuesday? Really?

Unfortunately, our happy feeling from last weekend was a little bit short lived. APL lost his job this morning. The company he worked for took a lot of cuts today – 18 people lost their jobs and the rest took significant cuts in salaries and benefits.

This economy sucks. Luckily, we're already old hat at dealing with things that suck, so I think we'll be ok.

Happy Campers

Over the weekend, APL and I found some happy by taking a camping trip to Great Sand Dunes National Park with a couple of good friends and River, who was overjoyed to have so much water and sand to roll in. We took our tent trailer, who is named Donna. APL and I once spent three months living in Donna and traveling to all 48 contiguous United States, so just driving with her in tow always feels like an adventure.

We spent the weekend basking in the sun, rolling in the sand, wading in the creek, watching the puppies play, flying my amazing new dragon kite, cooking over the campfire, and stuffing ourselves with s’mores. It was quite excellent and relaxing. We all really enjoyed ourselves.

This trip also served as a really good marker for how far I’ve come since getting diagnosed with RA. On the one hand I’ve been a little bit bummed lately that a full year has passed and I am still dealing with a lot of pain and fatigue. On the other hand, we took the very same camping trip to Great Sand Dunes last May, right before I was diagnosed and I was pretty miserable for that whole trip. I was headachy and achy and I basically spent the whole time laying on a blanket in the shade.

But this time I did a lot better. I drove down early to get a campsite and I set up Donna all by myself. I hauled wood, chased the puppies around, participated in cooking and cleaning, and actually felt pretty good the whole weekend. I actually had a little bit of energy to play! So we had a really wonderful time and both APL and I had our spirits lifted a bit and that’s a good thing.