Wednesday, December 23, 2009

Merry Christmas From Down Under!

APL just surprised me with the best Christmas present ever: spending Christmas eve and Christmas night in a hotel instead of the camper! Big comfy bed, curtains, and air conditioning to help me sleep in! Bathtub to soak my achy joints!

Best splurge ever. Best boyfriend ever! ~;o)

Merry Christmas from Down Under!!

Better Juice Maybe?

When APL was a very little boy, he once asked his mom for juice by saying “better juice maybe?” Sometimes APL and I use that phrase to joke about things (i.e. to help deal with things) that could/should be a bit better than they currently are. Considering our camper comes from a company called “Jucy,” it seems particularly applicable here. While I still think the camper is a major upgrade from hauling a heavy pack between public transportation and hostels, we’ve had a few problems with living in the camper since my last post.

Yesterday, I spent four hours in class learning about international trade law. APL spent all afternoon taking a surfing lesson. (Obviously APL got the better deal!!) By the time we got out of our classes, we were both so exhausted that we didn’t want to do anything at all. So we decided to pick up a pizza and just relax in Matilda. However, we made the mistake of driving away from the coast and back to our campsite to relax. At dusk. It was a very bad plan.

Though APL rigged up a brilliant mosquito net inside our camper (so we can keep the windows open and not roast to death in there) there must have been a gap or hole somewhere, because while we were trying to relax we had a mild mosquito apocalypse. We found ourselves sitting inside
our mosquito nets but getting our palms covered with bug guts and our net polka-dotted with blood as we killed dozens of mosquitoes. Needless to say it wasn’t at all relaxing. It was frustrating. And exhausting. And itchy.

Also, though I have been sleeping pretty well on the bed in the camper, living in the camper seems to be contributing to me not sleeping enough.
The campsite is pretty crowded and noisy until around 10pm, so we’ve been getting to sleep sometime after that, which is not actually too late. But we also end up getting up pretty early – around 8am for the past couple of days. This is partly because we have all the windows open in Matilda to stay cool, so it gets really bright in there really early. But, even if we could ignore the light, it starts getting too warm at the campsite, and certainly in Matilda, around 9am. Though 10 hours may seem like enough hours of sleep, with jet lag, traveling, hours of class every day, fatigue, and dealing with swollen joints from the heat I think I simply need more. I can feel my body getting more exhausted each day. I need major catch up sleep before I get past my breaking point.

This afternoon we also saw an error light blinking on our battery-powered cooler. Considering how I’ve been feeling more exhausted each day, potential failure of our cooler pretty much gave me a panic attack because I know that I need
to be able to keep up with my ENBREL injections to get through this class and enjoy this trip. We called Jucy right away and told them the problem. To which they replied: “oh, you can’t run the cooler all the time.” They insisted that they told us this when we picked up the camper. They 100% never said anything of the sort. I know, because I was paranoid about keeping the ENBREL cold so I paid close attention to the part about the cooler. They said we needed to keep it on low – not that we needed to turn it on and off. Grrr…In any event, it looks like we will have to run the cooler on intervals from now on to save the battery. Hopefully it will be insulated enough to keep my ENBREL cold. Everything should be fine, but it is enough to make me a little bit nervous. Which makes me a little more grumpy. Which makes me a little more tired.

For Christmas this year I think I’d like a shady parking spot and a cool breeze so I can take a very long

Monday, December 21, 2009

Our Jucy Campa!

After arriving safely in Australia, we spent one night in Brisbane and then picked up the little camper that will be our home for the next three weeks and drove 2 hours south to Byron Bay.

There are a lot of hippies in Byron Bay!! It's sort of like Boulder, only by the beach with Aussie accents! We've seen a lot of backpackers here as well - people walking around town hauling huge heavy packs on their backs and loaded down with bags and small packs in front, which is exactly the way I traveled the last time I was in Australia. As an undergrad, I spent a full semester (about six months) at the University of Melbourne. Every weekend and over spring break I traveled around Australia, usually by myself, carrying all my stuff in a big pack and staying at hostels or (sometimes literally) sleeping on a tarp in the dirt. Basically, whatever was cheapest that's how I did it.

It has been interesting for me to think back on all that rough traveling. I'm actually really glad I got a chance to do it when I did, because I don't really think I'll ever be able to travel like that in the future with my RA. My achy joints, combined with my fatigue, would make it really hard to be lugging a pack to public transportation and between hostels - especially in hot weather. (The heat actually seems to be doing a swelling number on my joints, which is not exactly pleasant.) Sleeping on little more than a tarp would probably leave me in so much pain that I wouldn't even be able to move in the morning.

In order for me to travel with my RA, I need at least a little bit more luxury than the last time I was in Australia (i.e. any at all!). I need a soft place to sleep or lay down and rest if I get tired during the day. I need to be able to bring extra luggage - drugs for pain and potential infection, pillows and braces to try to keep my joints comfortable, etc. I need help hauling heavy luggage around. And if I'm going to be anywhere for longer than a couple of days, I need a way to bring my ENBREL and keep it cold.

But, surprisingly, I have discovered that if those small requirements are met I am still totally capable of roughing it! And, luckily, the little camper we rented does the job! It comes from a company called Jucy, and isn't actually a camper, really. It's more of a van (painted neon green and purple) with a bed in the back instead of seats, a little bit of built in storage, and a little battery-powered cooler. Thus: someplace soft to sleep, somewhere to put my extra luggage so I don't have to carry it, and someplace to keep my ENBREL cold.

The little tent trailer we have at home is named "Donna," so APL named our little home Down Under "Matilda" (as in waltzing!). With the brilliant plan APL had last night to hang mosquito netting around the bed so we can keep the moon-roof open at night, Matilda is actually a pretty comfortable place to stay. Plus we can take it our lodging anywhere we want. Yesterday I took a rest in bed and watched surfers. This afternoon we cooked sausages for lunch at Seven Mile Beach in the Broken Head Nature Reserve, and there was basically no one else anywhere around.

Byron Bay is beautiful and the beaches are fantastic - squeaky white sand and green water. So far we've been swimming and exploring in the morning, and then I go to class in the afternoon. The class is also pretty relaxed for a law school class, which is nice too. All in all, best 2 credits ever!! ~;o)

Updates when I can!

Sunday, December 20, 2009

Bula From Fiji!!!

“Bula” means something like “hello” or “hey, how’s it going?” in Fijian. Everyone here says it to you – and everyone says it with a smile. The people in Fiji have been wonderful – all really helpful, super friendly, and laid back.

Because of Cyclone Mick, which hit Fiji only a few days before we arrived, the conditions here have not been absolutely perfect. For one thing, it has been a bit gray and cloudy, though still warm. (And certainly warmer than the 8 degrees we left in Boulder!) The main issue from the cyclone was that it left a huge quantity of debris on the beaches. Most of the debris consisted of driftwood and a bit of garbage, which was not actually so bad. But, while walking on the beach, we did also discover some kind of dead tentacle and a severed cow head that I’m sure will haunt my dreams with its lolling tongue for some time to come!

The little resort we stayed at was a bit run down, and also had some cyclone damage, but I actually sort of liked it that way. It felt more local and unique. We spent two nights in a quiet bungalow with an ocean view and a hammock. We drank fruity cocktails and lounged by the pool. I must admit that I did actually do a little bit of homework for my upcoming class, but I suppose if you have to be in law school, reading poolside in Fiji with a cocktail is probably the best possible option!

While we have enjoyed ourselves overall, unfortunately I do have to admit that all this traveling hasn’t been completely easy for me. The first night we got here I had a nosebleed like the one I had on the boat in China (i.e. gushing over the sink for at least half an hour, dizzy by the time it finally stopped.) By the time we got to bed that night I was so fatigued from all the traveling that my eyes were literally twitching and I had trouble moving my joints at all.

Although I slept really well, I was still feeling way less than 100% on our second day – really fatigued, super swollen and sore hands (from the heat, maybe?), and a lot of pain in both of my hips. After spending the afternoon in the sun, I had a little bit of a breakdown that evening. Somehow, it felt worse to me to be in so much pain on a vacation than on an ordinary day at home. I don’t know if this will actually make sense to anyone else, but at home it is perfectly normal for me to feel icky. I go to school and run errands while feeling gross all the time. But on what may be a once in a lifetime trip, and the first thing APL and I have been excited about in a long time, I really wanted to feel good. And so I was really disappointed that I didn’t.

But APL was there for me, as he always is. He held me while I cried for a little bit and then he told me it was going to be ok. He told me I could keep going – that we could do this – and that we would still really enjoy ourselves. And so then we went to dinner, ordered a passion fruit daiquiri, watched the sunset over the ocean, and listened to the live music. And it was ok. It may not have been perfect, but it was real and we were together. And I’ll take that. Plus I took my ENBREL injection today, so that should help.

Now on to Australia...posts when I can make them!

Tuesday, December 15, 2009

Our Seventh

Happy SEVEN (?!?!?) year anniversary to my APL!!

Thank you for making me laugh and for always being there to catch me when I fall.

I love you always.

Friday, December 11, 2009

I Love Lucy

Did you know Lucille Ball had RA?

I didn't.

I learn something new every day.

(Heard of any other good RA Factoids? Send them my way and I will post them!!)


Law school exams = extremely mentally painful.

Law school exams + RA = actually physically painful.

My hands feel like they are going to fall off.

But I am DONE!!

I am one semester closer to that JD and three days away from my seven year anniversary with APL and our departure to Fiji and Australia for the holidays.

And that means the only thing I need to do with my hands in the next week is hold a drink with a little umbrella. And that's ok by me. ~;o)

Monday, December 7, 2009

Nine Days

It is 10 degrees outside. There is a foot of snow on the ground. My hips and wrist continue to be painful. Nevertheless, I am buried in the depths law library under a mountain of administrative law and energy regulation. I now have only three days to finish learning it all before having to take a 3hour+ exam on Thursday and and then do it all over again on Friday.

But you know what? In nine days APL and I will be celebrating our 7 year anniversary by hopping a plane to Fiji. Followed by almost 3 weeks in Australia.

I can't wait!

Sunday, December 6, 2009

Thought of the Day

In between attempting to memorize administrative law, fighting my way through energy regulation, and eating vicodin to maintain my ability to sit at this cubicle in the law library in the first place, I have been doing a lot of thinking about the following question:


Sorry for the shouting, but what was I thinking? RA or no RA - law school is rotten!!

And, secondly (and perhaps more importantly): Is it too late to change my mind?

It is too late? As a 4L I should just suck it up and finish the damn JD? Crap. And ow. Mostly ow. ~;o(

Saturday, December 5, 2009

Fat & Loopy

STUDY UPDATE: Though I took 10 mg of prednisone this morning (as opposed to the 2.5 mg I usually take every day), it hasn't attacked the pain in my hips and wrists as quickly as I would have liked. Looks like I'll need to take more prednisone again tomorrow.

In the meantime, I'm back to popping vicodin in the law library just to dull the pain enough to keep me sitting at my desk. So now I'm fat and loopy as I try to write my outline for energy law and regulation.

It isn't as much fun as you would think.

RA + Law School = I don't recommend it.

Today I'm Choosing Fat Face Over Failing Out of Law School

Having RA is all about making compromises. You have to compromise on which drugs to take and which side effects to accept. You have to compromise on which activities to do and which to let go with your limited supply of energy. You have to compromise about which pain to suffer and which pain to address with more drugs.

Lately I have really been trying to focus on loving my body and being grateful for everything it can do for me (rather than being upset about everything it can't.) However, though this tactic keeps me in a better mood, it really hasn't done much to stop the pain in my hips or wrist. And, unfortunately one of the things on the "can't" list right now is studying. My hips hurt when I try to sit at a desk for more than a few minutes and my wrist hurts when I type or use the mouse. And with TWO law exams coming up next week, I really don't have the option to not study right now. I need to study. And, while vicodin is useful for at least taking some of the edge of the pain, perhaps not surprisingly it isn't that useful for focusing on the details of energy law and regulation. And I don't suppose I can write on my exam "Sorry professor - I tried to understand this part but the vicodin made me a bit loopy."

So this morning I made the yucky compromise of upping my dose of prednisone. My rheumatologist allows me to do this on my own to deal with "flares." I have a love-hate relationship with prednisone. I love that it really does help with the pain and allow me to get back to my life and enjoy things - or in this case at least force myself to sit in the law library all day. But I hate hate hate the side effects - particularly the weight gain. I have enough trouble trying to love my body without being fat on top of everything else.

But, there are only five days between me and two finals, but I have only managed to finish one outline. The second has barely been started. So I have to do something and I don't know what else to do. Since I don't really like any of the available options, I have to compromise. So I'm choosing fat face over failing out of law school. Because RA is all about compromise. And I'll be smiling when I get that JD, no matter how fat my face is.

Thursday, December 3, 2009

Love Your Body

I am in a lot of pain today. More than maybe ever before. My hips are hurting no matter what position I am in. But they hurt the most when I am sitting up and I still need to spend hours at a desk today getting ready for law school exams next week. My right wrist is throbbing, despite the brace I've been wearing for almost two weeks now. It hurts just to move it, let alone type or use a mouse, and I have to spend hours today finishing my outlines. There's a slightly duller pain in all my other joints and a feeling of fatigue pushing down like a million pounds on my head. I literally had vicodin for breakfast.

So, considering all that, this next sentence probably won't make a lot of sense to most of you: I love my body and I am very thankful for how hard it works to keep me going every day.

I've been thinking a lot lately about pain. I think its funny that we don't usually appreciate everything our bodies can do until they can't. Our bodies are actually quite amazing. Each and every little part works really hard, every day, to keep us going. But, most of the time, I don't think we bother to be thankful for that. Most of the time we don't even notice how our bodies work every day - we take it for granted. And when our bodies suddenly can't do something - whether temporarily or permanently - we tend to get angry, upset, or frustrated. Instead, I think we should take it as a chance to be thankful for everything our bodies can do.

Take your hips, for example. The different positions your hips can be in help you get through your day, every single day. They help you stand in the shower and shave your legs. They help you walk and climb up and down stairs. They help you sit in chairs and on buses and in the car. They let you stretch out on the couch to watch TV. They let you sit cross-legged on the floor to play with your puppy. They let you lay stretched out in your bed at night. But when was the last time you thought about what your hips do for you? Maybe you've never thought about your hips at all. For me it wasn't until it felt like there was a knife in them. And then my first reaction was to be annoyed at the pain, rather than grateful for all the hundreds of days where my hips work properly and there isn't any pain.

Another good example is your non-dominant hand. If you are right handed, the assumption is usually that your left hand isn't very useful (or vice versa if you are left handed.) I'm left handed, and until my right wrist started hurting I never realized how many things I actually do with my right hand every day. Aside from the obvious right hand things (i.e. a mouse is usually used with the right hand, you shake hands with your right hand) and both-handed things (like typing) I've been surprised at how many things I do on a regular basis with my right hand. Turns out I open the fridge with my right hand. I usually pick up my ridiculously heavy backpack with my right hand. I open jars and water bottles with my right hand. I drive primarily with my right hand. I may be left handed, but my right had does a lot of work every day!!

It's really frustrating to have so much pain in my body that makes it difficult to do things - or keeps me from doing things all together. And I'm not saying that it's easy to deal with this pain. It isn't. In fact, it's the hardest thing I've ever done. Sometimes the pain makes me burst into tears and, by the time I stop crying, it's all I can do to drag myself to bed.

But, instead of getting upset and angry at my body for all this pain, I am going to try to be more grateful for all the things I can do and all the days I spend without pain, or even with less pain. My body may not be perfect but it is still amazing and I really should try to treat it that way. I am going to try, every day, to love my body and be thankful for it. I'm sure it won't be easy, but I'm going to try.

I encourage you to do the same.

Wednesday, December 2, 2009

Thought Of The Day

No, vicodin does not make administrative law any easier.

Tuesday, December 1, 2009

Stabbing Pain

It feels like there are knives jabbed into my hips today. It isn't nice.

Though at least the stabbing hip pain makes the pain in the rest of my joints feel a lot more dull. Right?

This Little Piggy Cried All The Way Home

We just returned to Colorado from a wonderful Thanksgiving week in Los Angeles. Both APL and I grew up there, so there were lots and lots of people to see. I left my casebooks in my backpack and just enjoyed myself for pretty much the whole week. (Which may or may not have been a mistake considering my upcoming exams, but too late now!)

We stayed in my mom's beautiful Spanish-style house, played with her sweet dog Harley, and watched ancient home videos. (I was a damn cute baby!) We had brunch with my Great Uncle (also my godfather) who just celebrated his 81st birthday. APL, my good friend CC, and I had mommy & me day with all of our mamas at The Getty Villa, a beautiful museum in Malibu, where we walked the grounds, played in the kids discovery room, and had a lovely lunch. APL and I had dinner at the local Polish Restaurant with my dad and my uncle. We had drinks and caught up with a friend from high school.

For thanksgiving, my mom joined us at APL's parents house with his aunt and several of his cousins, where we watched football and played with his parent's beautiful Rhodesian Ridgebacks. Dinner was absolutely delicious and I ate way too much.

We had breakfast with my friend LK's mom. LK was not in town, but we have been friends since we were 5, so her mom is sort of my second mom. Then CC, her boyfriend, and I went to see another friend from high school who I hadn't seen in forever and meet her her adorable six month old baby boy. I have to admit that this part was a little bit tough for me because I got tired after only about five minutes of holding the baby. My arms and hands hurt from supporting him. It freaked me out a little bit about how I will ever manage to take care of my own kids. But then APL and I decided that we would develop some sort of quick release baby sling, to save my arms from having to hold the baby all the time. I know we can make it work, but it is still sort of overwhelming to think about how different caring for my kids will be with RA than it would have been without RA.

On Saturday, we went to APL's 10 year high school reunion! Man was that ever a blast from the past! Since APL and I went to the same high school, I knew some of the people there and it was fun to see them after so long. (DISCLAIMER: APL and I were not dating in high school. Though we had mutual friends and went to prom in the same group, we didn't really get to know each other until we "re-met" my sophomore year of college. So the high school connection is like a weird coincidence). On Sunday we had breakfast with my dad and my uncle and then some of the people from the reunion had a picnic at the local park. I got to hold one of APL's classmate's six month old little boy and was happy that it didn't tire me out so quickly that day. That made me feel a little bit better.

Unfortunately, since then I've been feeling quite a bit worse. Though I really, really enjoyed getting to see and visit with so many people, and despite our best efforts to take it easy last week, I think we still went past my limits, leaving me extremely fatigued from it all. It didn't help that we had to get up at 3:45am on Monday to make our 7:00 flight at LAX to get on an 11:15am bus from DIA to get back to Boulder in time for me to go to my 2:30pm class. Perhaps not the best planning on our part. Perhaps these days it's worth spending an extra $200 on plane tickets if the alternative is going to wipe me out.

Not to mention that traveling with RA can be tricky. On top of the fatigue from such a busy week, since I am so tall sitting crammed into an airplane or bus seat has never been comfortable. Having my joints motionless for long periods of time leads to even more soreness than I had to begin with.

Today my EVERYTHING hurts. Toes, ankles, hips (damn do my hips ever hurt!!), shoulders, elbows, wrists (that stupid right wrist is still hurting despite wearing a brace all week), fingers, even my jaw. APL literally had to lift me out of bed and help me get dressed so that I could get to class this morning.

Needless to say this pain is not conducive to the hours I need to spend in front of the computer over the next week to prepare for my law school exams next Thursday and Friday. My hips are uncomfortable no matter what kind of sitting position I am in, typing hurts my fingers, and mousing hurts my wrist. And, since it's never fun to go to the doctors, it doesn't help that I also have a billionty doctor's appointments to attend to (ok, ok, three this week two next week). But, at least the doctor at my appointment this morning finally gave me the swine flu vaccine since I have a compromised immune system. So at least I won't get the swine flu on top of everything else. Hooray?

You might wonder why, if it hurts to sit at a computer, I bothered to waste 20 minutes typing this blog post. Honestly? I don't really know. It doesn't make sense. It probably would have been better to spend the past 20 minutes on my administrative law outline. But, somehow blogging here always seems to make me feel better. Somehow it allows me to vent my frustrations, which keeps them from distracting me when I finally do actually get to work. Hopefully it will help me be more productive. Which would be good because I have A TON of work to do in the next week.

And the little piggy cried Wee!! Wee!! Wee!! all the way home where she wished she could crawl into bed to rest her aching joints and never go to law school again. But at least she won't get the swine flu.