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.

Sunday, November 22, 2009

I Have RA. It Doesn't Have Me.

I realize my previous post was the fourth in a row about great online resources for people with RA. It made me start wondering what took me so long to find them! I mean, I've had RA for a year and a half now - why did I wait until now to start reading these uplifting resources?

I think part of the reason is that I only recently realized just how valuable it is to talk to other people who actually have RA and who really understand what I am going through. It's simply amazing the hope and inspiration that you can get from a perfect stranger.

Also, I think part of the reason I didn't go searching for these resources sooner was because I had a few bad experiences with literature about RA actually making me feel worse. Like my free subscription to Arthritis Today. APL and I were able to laugh about how discouraging some of the articles sounded (we actually jokingly renamed the magazine in our house to Dying Alone Monthly). We had a good laugh, and laughter is always a good medicine.

But, though we laughed, there's no denying that some of those discouraging sentences are still stuck in my head. Like the one that said "sometimes having arthritis means sitting on the sidelines while your friends and family dance at a wedding." Or the one that said "research has shown that people with RA have less emotional support and social companionship than people without RA." While I realize the magazine encompasses other kinds of arthritis besides RA, and maybe slowing down and letting go is a valuable coping mechanism for some people, I am only 26 years old!!! I haven't even had my own wedding yet!! This is not what I want to hear about my future!! So, after we stopped reading that magazine (for six months it went straight into the recycling bin after it arrived) I guess I was a little gun shy about searching for hope and finding the opposite.

Maybe most importantly, I have to admit that one of the biggest battles for me over the last year and a half has been openly admitting to the changes RA has brought to my life. I don't think I really ever went through a denial stage - I think I accepted that my diagnosis was going to require me to change my life pretty quickly. But it was more of a private acceptance. Within my own little family change was a fact, but outside of that I've struggled with how to deal with RA in public. At first I even had trouble talking about it with friends and family. I still have trouble making the words "I have RA" come out of my mouth and I still struggle with it professionally.

I know I've always admitted to and dealt openly with my RA on this blog, which is technically public. But somehow this blog always felt more private to me. Maybe its because at first no one was actually reading it. Maybe it's because, aside from my friends and family who know me personally, this blog is written by an anonymous "Z."

Maybe I've been afraid for the past year and a half to publicly link myself with RA. In my real life, if I make the choice to tell a particular person that I have RA, I can evaluate the situation for possible negative outcomes. Somehow I guess it felt a bit reckless, especially considering professional situations, to just announce to the world that I have RA, without any control over how people might change their opinion of me.

But you know what? I don't have any control over anyone's opinion anyways. And having RA is nothing to be ashamed of. It changes me, but it doesn't define me. The three inspirational women who's blogs I have just posted all have their full names on their blogs. And I've always claimed that this blog was all about honesty, but I haven't been completely honest here, have I? So, I'm going to take a deep breath and do it now:

My name is Mariah. I have RA. It doesn't have me.

Rheumatoid Arthritis Warrior

I'm still loving the NYT Article on RA for exposing me to so many wonderful RA resources. Rheumatoid Arthritis Warrior is another really great blog about living with RA and staying optimistic. The author of the blog has had RA for three years and has what I think is a really great outlook. The blog is based around humor, inspiration, networking, and teaching. I will certainly be following it from this point forward. ~;o)

Saturday, November 21, 2009

Autoimmune Portriat Project

I know I've said countless times on this blog that one of the most frustrating things about RA is its invisibility. On the outside, I look like a perfectly healthy 26-year-old, which can make life pretty tricky on bad days when I need to ask for help.

Though reading The Single Gal's Guide to RA, I just found an amazing photography project that addresses this very issue! Photographer Jodi McKee (who has RA herself) is creating a photo blog with portraits of people with RA and other autoimmune diseases. I think this is really interesting because it highlights the invisibility of these diseases. I also like her idea that newly diagnosed patients could look at her photos of beautiful, smiling people and know that they are not alone. While I would never wish RA or any autoimmune disease on anyone, somehow it does help to think that I am not alone, even though I'm not exactly newly diagnosed anymore!

I will certainly be following this photo blog from this point forward (HA!) and I recommend you check it out too!

The Single Gal's Guide to RA

One of the women interviewed in the New York Times RA Feature has her own blog: The Single Gal's Guide to RA. Even if you're not single, this blog has some really awesome (and optimistic!) content about living with RA. I plan to follow her blog from this point forward. (Ha!) Check it out!

Friday, November 20, 2009

The Voices of Rheumatoid Arthritis

Today, my sister sent me a link to a feature about RA in the New York Times. It featured short interviews from six different people with RA. I thought it was really interesting to see the different perspectives of the disease from different ages and situations. But while the six perspectives were quite different, I still found that I could identify with what all of them were saying.

I think it's really great that the New York Times featured this piece about RA. Since RA can often be an "invisible disease" (i.e. "you don't look sick"), I think it's really important that people try to understand how difficult it can still be to deal with RA even when you appear to be perfectly healthy. One of the things I still struggle with is people not understanding why a 26 year old who looks perfectly healthy might be too tired to hang out anymore at 8:15pm. ~;o)

Thanks for sharing this article, little sister!

Thursday, November 19, 2009

Mouse Ouch!!

Today my right wrist is killing me.

Unfortunately, this pain is not conducive to the hours I need to spend in front of the computer outlining administrative law.

But at least this little mouse ouch .gif is cute.

Wednesday, November 18, 2009


This has nothing to do with RA.

It is just plain awesome.

Thursday, November 12, 2009

Thanksgiving Challenge

If you are internet-savvy enough to be reading this blog, I'm guessing you probably know what Facebook is. In case you don't, Facebook is a social networking site where you can have a profile about yourself and connect to with your friends. Facebook also lets you post a short "status" to tell your friends how you are or what you've been thinking about.

When I signed on to Facebook this morning (not gonna lie, during my administrative law class...oops) I saw the following in my cousin JP's status:

Thanksgiving Challenge: Every day until Thanksgiving, think of one thing that you are thankful for and post it as your status. "Today I am thankful for." If you think you can do it, then re-post this message as your status to invite others to take the challenge, then post what YOU are thankful for today.

It really made me think. Despite what I thought were my best efforts to be positive, I know I have been focusing a lot on the negative lately. Even though I've had some reminders that I ought to focus on what I have to be thankful for, I've had a bit of a hard time doing it lately for some reason.

But I know there is always something to be thankful for. And I'm pretty sure, despite my negativeness these days, I can think of at least one thing to be thankful for every day for two weeks. So I am going to take my cousin's Thanksgiving Challenge and post one thing I am thankful for in my Facebook status each day. And, for those of you who are not Facebook friends with me, I'm planning to re-post them here as well.

Thanksgiving Challenge:

Thursday, November 12th:
I am thankful for my cousin, JP, who has been my friend all my life.

Friday, November 13th:
I am thankful that River snuggles with me on the couch when I am feeling icky. Snuggle puppy can always make me feel better.

Saturday, November 14th:
I am thankful that APL surprises me with breakfast when he knows I'm not feeling that well.

Sunday, November 15th:
I am thankful for six inches of fluffy snow and a squeaky toy. It made River ridiculously happy, which was so much fun to watch.

Monday, November 16th:I am thankful for cameras. Looking at pictures always makes me happy.

Tuesday, November 17th:
Today I am thankful for my dad and his crazy ideas - looks like APL and I are going to Australia for Christmas!!

Wednesday, November 18th:
I am thankful for the interwebs, which allow me to stay connected with friends and family scattered all over the country.

Thursday, November 19th:
Today I am thankful for airplanes. They let me visit my family for Thanksgiving, SCUBA dive on the Great Barrier Reef, and they bring RK home for a visit!!!

Friday, November 20th:
I am thankful for a week break from law school. Being a 4L is exhausting.

Saturday, November 21st:
I am thankful for our friend MS for watching River for us while we are in California next week.
Sunday, November 22nd:I am thankful for Game Night with friends tonight!

Monday, November 23rd:
I am thankful that I get to see my mama today!!

Tuesday, November 24th:
I am thankful for my Great Uncle (and godfather)!!

Wednesday, November 25th:
I am thankful for mommy & me day at The Getty with APL and CC and all of our mamas!!

Thursday, November 26th:
I am thankful for our family, mine and APL's, here and far away. I love you all.

Happy Thanksgiving!!!

Tuesday, November 10, 2009

Please Knock on Every Piece of Wood Ever

Before reading this post I would really like you to please knock on every piece of wood ever. No, really. Please do it.

Did you? Ok.

Can please you cross your fingers too?

Ok. You may proceed to read:

Plumber Damage Update:
After who knows how many cubic feet of dirt, rock, mud, and water were removed from the hole in our front yard, the sewer line in question was finally uncovered. It was then determined that the pipe had been destroyed by a tree root. And the HOA is responsible for trees and their roots. looks like the HOA will have to cover the costs of "Sewerpocalypse 2009." Which means that technically APL & I are still paying for it, but we'll get to split the costs with the other 100 owners in our complex. Which makes it much more affordable and less horrible.

I'm afraid to even feel happy about it, lest I do something to pop this small luck bubble.

"Servicio de agua!"

Plumber Damage Update:
The backhoe arrived bright and early this morning and set up shop in our front yard, which is a common area of our townhouse complex. Since the collapsed sewer line is nine feet underground, there was a lot of digging to be done. They started digging, making a huge pile of dirt on the lawn, which I'm sure all the neighbors will love. They were digging, digging, digging until one of the guys yelled "Servicio de agua!" and the digging stopped immediately.

Don't speak Spanish? Let me translate for you: they hit a water line!! The hole, about 3 feet in diameter and 7 feet deep at the time, was filling up with water!!! Muddy nasty water had to be drained out of the hole, and digging had to be stopped until they could figure out where the water was coming from and how to shut it off.

Unfortunately, the fun doesn't end there. Once the hole was drained, they dug another two feet but didn't find the problem. So, it was determined that the hole needed to be widened. How to widen it? Chop up the sidewalk. Did I mention that this was brand new sidewalk that the HOA had just had replaced? Yeah, well it's gone now. And they are still digging. And, as far as I know, they still haven't found the problem.

Ha? Ha? Ha?

P.S. The picture is of the backhoe in my front yard!

Laughter is the Best Medicine

A few months ago, a stranger emailed me out of the blue to tell me about the impact my blog has had on her. It was just the push I needed to start blogging again after a few months of blog silence. And I was really grateful to her for that.

This morning she emailed me again to offer her support through the tough time APL & I have been having lately. She told me how strong I was and encouraged me to look at the positives in life, which, despite my recent complaining, I am honestly always trying to do. She helped me find the right perspective to keep moving forward. So I am very grateful to her again.

However, she also made me realize that the words in some of my blog posts, like the last one, could come across quite differently to readers who don't know me personally. When I started this blog over a year ago, the only people reading it were my friends and family. I found it to be a good way of keeping everybody posted about my health developments without me having to go through the exhausting process of repeating myself over and over again.

Today, I know I have some readers who don't know me outside of the interwebs. So while friends and family reading a post may find it obvious that I am joking my way through a problem, I guess the words themselves can sound more serious than I meant them to. For example (and for the record!) I don't really have a drinking problem. In fact, I honestly hardly drink at all. That was just APL and me joking our way through the crappy couple of days we have had, and my friends and family know that about me. So now I hope all my readers know it too.

Because laughter really is the best medicine when everything seems to be going wrong. Sometimes it's all we have. APL and I do our best to laugh all the time, in every situation. (Speaking of which, a plumber damage update is on its way!!) I know that I am really lucky to have APL, because he keeps me laughing whenever I feel like giving up. And that is worth all the medicine in the world.

I really do always try to look at the bright side of the situation. I know that I am very lucky and that there are many people in the world who are worse off than I am. I know that it could always be worse. But I also know that it could certainly be better. And I have to do what I can to work towards making it better. And, sometimes, the only way for me to start feeling better is to vent about what's making me feel bad. Since APL and I have talked about this stuff until we're blue in the face, sometimes it seems to help me to vent into cyberspace.

To everyone who is reading this (friends, family, and strangers): Thank you for listening. It helps.

Monday, November 9, 2009

Vodka O'Clock

Plumber Damage Update: After an expensive camera operation, it has been determined that the collapse is in the sewer pipe "somewhere near" where our line attaches to the main line. If the problem turns out to be with the main line itself, the HOA will cover at least some of the costs. If the problem turns out to be fully on our line, looks like we'll be responsible for the whole cost. The only way to find out is to dig. Did I mention that the problem is nine feet underground?

Estimated cost to start this operation? $5,000.

I think APL sumed it up best when he said: "Pursuant to how this day has turned out, I may have vodka for dinner."

While I know it's less than healthy to solve your problems by drinking, I can't help feeling like APL is right. I mean, at least that glass will be half full.


I know I am doing better. I know things are better than they were a year ago. Actually, more like a year and a half at this point. I know all this.


But, no matter how positive I try to be, some days it feels like things will never stop going wrong. Some days it feels like if there is ever an option for something to turn out good or to turn out bad, it always turns out bad. This isn't my favorite feeling, but I don't quite no how to shake it on days when it feels like everything is going wrong.

Take today, for example. This morning I went to the eye doctor because my contacts have been a bit blurry lately. Though that prescription was supposed to be good until January, it turns out my eyes have already gotten worse. My prescription needs to be strengthened. This would be no big deal except that, for some reason, my right eye doesn't seem to be focusing properly. Which means that even with the strengthened prescription, my right eye is still blurry. Which I suspect contributes greatly to the headache I have had for about a week and a half now. The doctor said he can't see anything wrong with the eye, which is good, but that also means he can't fix the problem. He gave me some contacts to try and said my eyes might adjust to them. Might? Oh, good. I'm going back in a week to get checked out again. In the meantime, I still have a wicked headache.

Today APL is also at home waiting for the plumber to deal with more bad news. Extremely bad news. Why is it that with our house when something goes wrong, it really goes wrong? Here's how it started:

On Friday I noticed some water on the floor in the laundry room. No good. So we called a plumber, who said that our water heater was 20 years old, leaking, and needed to be replaced. Which is true. So there's several hundred dollars on that. However, the next day we noticed that when we turned the shower on, water was coming up through the drain in the laundry room floor. Sewage water. Gross. We poured some draino down there. No help.

So then we call roto-rooter to unblock the pipe. Three hours and lots of equipment later, including some equipment getting broken from whatever was blocking our pipe, roto-rooter determines that we have a collapsed sewage pipe that will need to be excavated. Really? Excavated? Awesome.

The slightly good news is that, depending on the exact location of of the collapse (where it is physically located, whether it is a shared line) our HOA may be at least partially responsible for the cost. But, the extra bad news is that our HOA is a complete disaster and every time we deal with them we end up with a much bigger headache than we originally started with. So, no matter where the break turns out to be located, dealing with it probably won't be pretty.

I'm also feeling sort of discouraged about how things are going at school. My dad had this crazy idea of taking an intersession law class in Australia over the winter intersession. His idea was that it would be a good way to earn some credits towards finishing my degrees, reduce the stress I will be under next semester, and give APL and me a little mini vacation that might lift our spirits up. APL and I love to travel, so a vacation like this could be like pressing the reset button for the new year. It was also the first idea to make things better that I've felt excited about in a long time.

The problem is that I have to get the credits approved by the Dean's office before I can sign up for the program. Though I turned in the paperwork for the class last Tuesday, and though there is another student form my law school who already has approval for the second session of this program, for some reason the Dean's office really seems to be dragging their feet on approving the session that I want to attend. And, since this traveling would take place over the holidays, the longer we wait to book our travel the more expensive it will be. How long can we wait before it becomes totally out of our price range? Especially since we have so little money coming in these days?

So I am anxious to know, one way or the other, whether the credits will be approved. On Friday, I politely asked the Dean's secretary when I might have a decision. This morning I got a message that the Dean wanted to meet with me. I thought I would find out, one way or the other, whether I could go to Australia this winter. But the Dean only wanted to tell me that she would make a decision by the end of the week. And she seemed sort of annoyed that I had asked at all about when I would hear at all.

I know she still could decide yes at the end of the week, and a week will probably only change the cost of things a little, which hopefully we can still afford, but somehow it just felt really discouraging that the Dean's office wasn't being more helpful and encouraging. And the little pessimist inside of me seems to have already decided that the only plan I've been excited about in a while isn't going to work.

And my hands hurt.

Today is not my favorite day.

But I'm also sick of being pessimistic. I'm sick of being discouraged. When is our luck going to change?

Saturday, November 7, 2009

Autoimmune Support Group

Several months ago, I saw a flier on the wall of my rheumatologist's office offering a women's support group for athletes with chronic illness. Since one of the things I continue to struggle with is how to be active while my body feels so awful, it sounded like a group that could potentially be really helpful for me. I missed the first meeting because of the chaos with the conference, but I am happy to report that I finally met with the group this morning.

The group has turned into a small, informal autoimmune support group. There were four of us who met at a local coffee shop this morning. One woman also has RA, and the other two have different autoimmune issues. All three were older than me and had been dealing with their conditions for at least five or ten years - pretty much since they were my age. But, despite these differences, we all had in common that our illnesses can make it difficult to stay active - or even keep up with others sometimes.

It was really amazing to talk to these women. While I love APL and RK with all my heart, and I never would have made it through the past two years without them, there is just no way for them to completely understand what I've been going through. And though I can email with my cousin who has RA, and I've met a few people online who have RA, I don't think I've ever really had the chance to sit down and talk face to face with someone who really understood me. I mean, these women were complete strangers to me this morning, but, on a certain level, they understood more than anyone I've talked to since I got diagnosed.

One of the women made a really interesting point about autoimmune issues and people who are really high-achievers in their lives. I'm not sure I'm going to be able to communicate it properly here, but it really struck me as true, so I'm going to try. She said, in a way, it makes sense that people who are really driven end up with autoimmune issues. Driven people tend to be really hard on themselves, and, metaphorically, that's exactly what an autoimmune condition is - the body being really hard on itself. I think this makes a lot of sense. I've never really thought about how being an overachiever - in school, in sports, etc - was another way of being hard on my body. I've been hard on my body all my life - it didn't start with the RA. So it makes sense that part of dealing with an autoimmune disease is finding ways to ease up on yourself, give yourself a break, and finding ways to love yourself as you are. I'm hoping this group can give me some advice on how to do that!

I have to admit that it is a little bit scary that these women have been dealing with autoimmune issues for five or ten or twenty years, but still haven't found all the answers. But, somehow, it was also really comforting to know that I am not all alone. I'm not the only one struggling with my messed up body and immune system. It was reassuring to hear that I can get the disease under control and get my life back on track from people who have actually done it themselves - or have at least made more progress than I have! And it was also really good to realize that there are resources for me to find support.

The group is hoping to meet every other week or so to talk about these issues. We also talked about getting together to do some moderately active things - like a bike ride or a hike - where we all know we'll be going at a more moderate pace than the rest of the super-active Boulder people! And that sounds pretty good to me too, since I've been having so much trouble getting started being active lately. I think this group could be a very good thing for me, and I am already looking forward to the next meeting. And I'm glad I responded to a flier I saw on the wall.

Wednesday, November 4, 2009

Wild Thing, I Think I Love You

After my exam on Wednesday, I literally slept for two days straight. It didn't even occur to me to try to go to class on Thursday morning. I was completely beat and there was nothing to do but sleep. So I slept.

But, after all that sleeping, I was feeling much better by Friday and I ended up having a very happy Halloween! My friend CC came all the way from Los Angeles to visit us for the weekend. CC and I used to play water polo together in high school, so we go way back. It was really fun to have her around this weekend for some much needed girl time. She also made everything we did this weekend, from special events to just sitting around in the living room, a lot more fun.

On Friday APL and I held our 4th Annual Pumpkin Carving Party! Although it snowed and made everything muddy and ruined the corn maze, we still picked up our pumpkins at the farm this year. Last year, I didn't feel up to carving a pumpkin. I decided that achy hands + slippery pumpkin guts + knives = not such a good idea. But, despite the trouble I have been having with my hands lately, and despite how exhausted the conference and the exam made me, for some reason I felt really good on Friday. Maybe the acupuncture is working, maybe it was just the lifting of all the stress I have been under lately, maybe it was the two days of sleeping. Whatever it was, I'm not going to question it! I carved a pumpkin and had an amazing time at our party!! (Though I must admit that I did have a little help scraping the guts out of the pumpkin when my hands got tired. But, hey! It still an improvement over last year so I'll take it!)

On Saturday, CC, APL & I put on our costumes and went out on the town. We had a wonderful time. CC dressed as a geisha in a kimono I brought back from Japan with me. We had a lot of fun trying to give her the equivalent of crazy geisha hair and makeup with the limited supplies I had around the house. I dressed up Max from Where The Wild Things Are and APL was my Wild Thing (in the movie his character was called Carol). We were all disappointed in the disappearance of the Naked Pumpkin Run, but we had an awesome time hanging around the Pearl Street Mall and checking out all the creative costumes. I even climbed on APL's back and we ran around the mall, just like Max rides the Wild Things in the book and movie. Honestly it is the first time in a long time that I can remember really enjoying myself and not worrying about how I felt. I just felt so happy to be there with CC and APL.

Especially my Wild Thing. He makes my heart sing.

Wednesday, October 28, 2009

Thank You, Body

Dear Body,

Thank you. The conference is over and the exam is completed. And, thanks to the snow, class this afternoon is canceled. You may crash now.


Dear Body

Dear Body,

I know I have more than just a little unfair to you over the past few days. I know you are extremely close to reaching your breaking point. But if you could just hold out another couple of hours through my oil and gas law exam I would truly appreciate it. Because it really would not do to have my hands stop working halfway through.

Thank you.


Sunday, October 25, 2009

2009 Energy Justice Conference

I haven't posted on this blog in a while because I have been a COMPLETE CRAZY PERSON over the last few weeks getting ready for the CEES Energy Justice Conference this weekend. The conference was Friday and Saturday and luckily all the hard work paid off and it went extremely well.

There were 40+ speakers from all over the world, 200+ attendees, a musical prelude, a keynote address, 11 sessions, 2 interactive theatrical sessions, two breakfasts, two lunches, four coffee breaks, two receptions, and a speaker's dinner!!! I was the "conference coordinator" so I was in charge of making sure the ENTIRE THING went well.

Honestly it was WAY more work than I should have taken on, considering I am also a full time student and this was my first semester back to school and I still don't have the RA completely under control. But the conference was like another Great Wall for me - I didn't think I had any realistic chance of actually doing it, but somehow I did. Despite the limitations of my body, I can still do a lot. But, to be fair, I also had a lot of help from a fantastic group of my classmates! And I couldn't have done it without them!

I think I may still be running on adrenaline at this point - because I still feel pretty good and the crash I was expecting has yet to occur. This is a very good thing because I also have a final exam on Wednesday morning!! I will most likely crash hard after that, but if I make it through the exam that will be good enough for me.

Take that, RA!!

Saturday, October 10, 2009

I Am Not Typing This Blog Post

I am not typing this blog post. Instead, I'm using a program called MacSpeech Dictate. I'm wearing a microphone headset, like Madonna or something, and I'm speaking into it what I wanted to type.

I just started using this program last night, and so far it's going pretty well. APL decided it would be a good idea to try out one of these dictation program so that I could use my hands a little bit less. I'm not certain that this program is going to work for formal things, as you have to say the punctuation marks that you want to use out loud. It's a little bit awkward and I think it will take some getting used to. It also wasn't exactly cheap, I think it cost about $200. But if I can take my law school reading notes this way, it'll save me hours of typing which will hopefully help my hands hurt a little bit less.

The program isn't perfect. Sometimes it misunderstands what you want to say. For example, last night when I said APL's name out loud, it typed "awesomely cheap." Also, since you have to say the punctuation marks you want to use out loud, I have no idea how you actually get it to type those words...

As you can see by those three periods above, every time I said the word. It used a punctuation mark but I couldn't get it to write the word. It this making no sense? I can get it to type the word by saying something like "there was a period in my life when" but otherwise if I say the word. It puts a. I know this paragraph made no sense whatsoever. I'm still learning how to use all of this.

But, for the most part I'm really happy with the software so far. I think all work especially well for taking notes when I'm reading as that essentially consists of copying things out of the book anyways. Although, I have to admit I feel a little bit strange sitting alone in my room talking to my computer. Especially since I have to say all the punctuation marks I want to use out loud. But, I think once I get used to it, the hours of typing that I save using this software will probably have my hands hurting a lot less.

And that's a very good thing.

Friday, October 9, 2009

Today's Lesson

Laying on your back + 46 needles stuck in various parts of your body + hacking cough = a very bad plan

Thursday, October 8, 2009

Does Not Compute

RA = massive amounts of joint pain

Sucks a lot, but at least makes sense

Massive amounts of joint pain = complicated treatment

Fair enough.

Complicated treatment = Methotrexate (six or eight pills a week for over a year) + Remicade (infusions tried for six months) + ENBREL (currently once a week injection) + Prednisone (to help with pain while we figure out the rest of it)

Wow. That's a lot of drugs. Not to mention the ones I am on to help with the emotional aspects of all this. Oy.

Prednisone = Inflammation reduction + fat face + 30 pound weight gain


Prednisone + Reduced ability to exercise + 30 pound weight gain = High blood pressure at age 26


High blood pressure at age 26 = Need to take meds to control blood pressure

Like I needed some more meds to add to my crazy cocktail!! But I understand the need.

Meds to control blood pressure = hacking cough

Wait....what? My blood pressure meds are giving me a....hacking cough??


Wednesday, October 7, 2009

Thank You to an Optimistic Stranger

Upon the conclusion that my support system in Boulder could be improved, I've started trying to brainstorm how I might be able meet some new people. My sister suggested joining a book club, but I think that extra reading probably isn't a good option simultaneously with law school, because I'm not even getting my assigned reading done. I really don't need help procrastinating. So I'm still having trouble coming up with ways to make new friends when I feel so icky.

Then I started looking into RA support groups, thinking it might be good to meet some people who would be more understanding about what I've been going through. I found a support group on facebook, which doesn't exactly serve my needs to meet people in Boulder. But I thought that at least I might be able to find someone to talk to a little bit.

There was a post on the group's wall from a member who had just gotten some bad news related to her RA, so I sent her a message telling her that I understood how she felt and I hoped things would look up for her soon. Considering that I was a complete and total stranger emailing her totally out of the blue, I was delighted when she wrote me back the same night!

She thanked me for my note and told me that she had also been diagnosed at age 25 - which was 12 years ago. While she admitted to feeling a little bit hopeless sometimes when new flares developed, she went on to say that she just didn't let the RA rule her life. Instead, she said she runs her own life and thinks of RA as a tag-a-long. While RA wasn't the life she would have chosen, she said she has had a blessed life for the past 12 years.

Her email was scary and uplifting at the same time. Scary because she is still dealing with new trials and tribulations from her RA diagnosis 12 years later. And I have to admit that it is a little bit overwhelming to think about being in a position similar to where I am right now for the rest of my life. But, on the other hand, her message was also really uplifting. Even after dealing with RA for 12 years she was still able to be really optimistic and supportive to a complete stranger who emailed her totally out of the blue. And that is inspirational to me.

That's something I am going to try to remember next time I feel like giving up. If she can love her life after 12 years with RA, I can find a way to love my life today.

Thank you for your help.

Tuesday, October 6, 2009

The Spoon Theory

I found a story called "The Spoon Theory" that does a really good job of explaining what it's like to live with chronic illness. Technically, the story is about Lupus, which is a different autoimmune disease than RA. But the analogy is still quite good. If you ever wonder what it's like to fight through pain and fatigue every single day, I recommend reading this story.

Needed: Bachelorette Party, Stat

When I have a bad day, it really gets me thinking about my support system. Unfortunately, the conclusion that I have come to is that my support system here in Boulder just isn't enough. Poor APL and River have done everything they can think of cheer me up and get me feeling better, but sometimes I think they both need a break from me. Or at least some help.

I honestly wish I had some more friends - particularly girlfriends - here in Boulder. But what they don't tell you about being a grown-up is that making friends is actually really hard. Especially when you can't quite do things people your age consider fun - concerts, bars, parties - without feeling like a grandma who is too tired and achy and wants to go to bed at 8:15pm. To make friends you have to be a fun person that people want to be around. No one wants to hang out with 26-year-old grandma on the weekends.

Don't get me wrong - I have girlfriends who I know love and support me. The problem is that they are scattered all over the country and I hardly ever get to see them. Or even talk to them, for that matter. I wish I could just have one weekend with them to recharge my spirits - some ice cream, girly movies, pedicures, time to talk...

This leads me to the conclusion that it's pretty stupid that you only get to have all your girlfriends together for a big fun weekend after you get engaged. I mean, to be fair, I am a bachelorette RIGHT NOW! So why can't I have a girls' weekend now?

I could really use it.

Bad Days

I never give up.

But some days I wish I could.

Monday, October 5, 2009

Probably Not a Sustainable Treatment Method

Last night I discovered that vodka is just as effective for pain management as most of my RA drugs. Maybe more effective. And certainly much cheaper.

Friday, October 2, 2009

46 Needles & Me

Much to my displeasure, I spend a fair amount of time getting friendly with needles. I stab myself once a week with ENBREL and I am considering the option of taking my methotrexate by injection too. I also have to get blood drawn for my rheumatologist once a month to make sure the methotrexate isn’t destroying my liver.

Those monthly blood tests, in addition to other tests occasionally ordered by my primary care doctor, have had me in and out of the University Lab at least once a month for more than a year now. Since it is usually the same guy drawing my blood, as I’ve mentioned before we’ve gotten to know each other and become pretty good friends (which is a big improvement from how I used to treat lab techs in my childhood!) Favorite Lab Man always does a pain-free job of drawing my blood, hardly ever leaves a bruise, and is super-sweet to me.

When I went to visit Favorite Lab Man for blood tests last week he asked me how I was doing and I told him honestly about the trouble I have been having with my hands. He asked me if I had ever considered acupuncture. I told him I had thought about it, but never really done it. Then he recommended an acupuncturist to me that had treated him and also used to be a nurse at Student Health. He swore by her treatment and said she really knew what she was doing. He said didn’t know if acupuncture could help me, but if it could she would be the one to see.

So I took Favorite Lab Man’s advice and I had my first acupuncture appointment this morning. The acupuncturist was a super-nice lady and seemed very knowledgeable. She told me that she actually treats another patient, an elderly woman, who has RA and that the acupuncture really seems to help the patient. Apparently this patient used to take ENBREL every 10 days but now she only needs it every 15. She said she has also treated other patients with autoimmune issues, so she said it was worth a try to see if it would help me.

And was it ever weird!!! It was a really strange combination of modern and ancient medicines. In total she stuck about 46 tiny, single-use needles into my body. The needles themselves didn’t really hurt, but sometimes they caused this weird, zinging sensation. She stuck most of the needles in the backs of my hands and my fingers to help with my hand pain. Then she hooked a couple of the needles in my hands to this little machine that sent a small electric current between the needles, which felt really weird. (Not going to lie, it reminded me of the theaton thingy in the Scientology episode of South Park) But, on other needles on my hands, she stuck little balls of herbs at the top and lit them on fire like incense. So there I was, with 20 needles in my hands, some hooked up to electricity and some smoking some ancient herbs.

She also stuck some needles in my knees, shins, and into my feet. She told me that while Western medicine sees RA as an autoimmune disease, Chinese medicine views it as a “dampness” in my body that needs to be pushed out. So the needles in my legs and feet were supposed to work on that. She also asked me how I slept and I told her honestly never very well. So then she even stuck a few needles in my scalp and in my ears that she said would help me sleep.

I can’t honestly say whether or not the acupuncture treatment worked. For one thing, she told me that sometimes you don’t see results until after two or three treatments. And I still have some pain in my hands – but obviously I am typing this post and I am not crying so maybe that is some sort of improvement. Who knows. For now I am keeping an open mind about acupuncture and going to see her again next Friday. We’ll see what happens.

Thursday, October 1, 2009

Dear Hands

Dear Hands,

Please stop hurting.

It hurts me to do everything.

It hurts me to do anything.

You almost made me cry in class this morning while trying to type notes.

I don't think I can take much more.


Monday, September 28, 2009

Trying to Un-bite What It Turns Out I Couldn’t Chew

--> Although I’ve spent practically a year non-stop thinking about this problem, I still struggle almost daily with the limitations – physical, emotional, and mental – that RA puts on my life.
At the beginning of the semester I was doing really well. I was only experiencing relatively small amounts of pain on a daily basis. I had more energy than in the past year. I was exercising every day and even loosing some of my prednisone weight-gain. And, as my ridiculously over-organized Type A personality had basically been on hold all spring during my semester off , I can’t even begin to explain how good it actually felt to get back to work and school. I have to admit that I felt more like me than I had in a long, long time.

Unfortunately, I’ve had some trouble since then. For one thing, the conference I am planning for work has turned out to be WAY more work than I really intended to sign up for. And though I have delegated everywhere I possibly could, it still takes a lot of effort to keep track of what everyone else is doing. So I am spending a lot more time on the conference than I originally intended to. However, I do think the networking and resume material will be worth it in the end. Plus, for the most part, I really enjoy the work.

Not to mention the conference will be over in October. I thought I had planned well enough because I knew the beginning of the semester would be a little crazy with the conference. But what I didn’t plan for was all this hand pain. I’m still assuming the pain started with overuse at the wedding about two weeks ago, but that’s mostly because I don’t like the alternative explanation: that my treatment isn’t working as well as we thought it was. I'm not ready to start the trial-and-error drug trials again. Either way, when is this hand pain going to let up? It is really causing me trouble in getting anything done. Consequently, I am behind in all of my classes. And if the semester keeps up this way, I'll have trouble keeping up even when the conference is over.

So: I am forced to admit: I have bitten off more than I can chew this semester.

Solution: I dropped a class. A “W” will appear on my transcript, but I guess with a whole semester missing one “W” is not that big of a deal. I am trying to take some solace in having the strength to admit that I took on too much, and having the courage to cut back on my commitments before it is too late. But I still feel pretty bummed about it.

Plus, my hands are still killing me.

I've had better days.

Thursday, September 24, 2009

Bad Hand Day

The Good: Being awarded $27,000 in law school scholarships.

The Bad: Having to attend a scholarship recognition ceremony on a very bad hand pain day. Did you know that there is literally NO polite way to meet people without shaking hands? And of course it is considered good manners to have a firm handshake....

That networking hurt. Literally.

Tuesday, September 22, 2009


This morning, for some reason, I was crying before I even managed to get out of bed. I honestly don’t know why. Guess I was feeling pretty tired and overwhelmed even though it was only 7:30am, which sucks. But, with some kisses from River and a promise to buy me a latte from APL, I managed to get out of bed and get myself to class. But, unfortunately, the trouble didn’t end there.

Dilemma #1: My hands are still hurting so note taking was difficult in class this morning. Luckily, my rheumatologist has given me vicodin for just such situations – where I need the pain to stop rightnow so I can get something done. So I took a vicodin. But, I guess since my stomach was pretty empty and I was already exhausted and sort of out of it to begin with, the vicodin made me a tiny bit loopy. So then I couldn’t seem to pay attention to what my professor was saying, which defeated my ability to take notes anyways.

Dilemma #2: My hands are still killing me. They have been hurting pretty badly since the wedding where I helped with the flowers. I felt great that day and helping with the flowers was a lot of fun. It was also really rewarding to see the wedding come together so beautifully with my help. But I guess I learned a lesson: Even if I’m feeling pretty good, I simply cannot spend all day trimming flowers, using scissors, taping, gluing, and tying ribbon. It’s just too much for my hands. I have to find some other way to help instead. You’d think I would have figured that out by now, but I guess not. So I made a mistake.

So, the dilemma becomes, now what? What do I do now to get my hands to stop hurting? Vicodin only helps the pain a little bit, and has side effects. APL and I have tried some “joint rubs” but all they have seemed to do is make my hands smell funny. So I guess what I need now is rest. But how do you rest your hands?

You use your hands for EVERYTHING. There isn’t one thing you do all day where you don’t use your hands. I need my hands for note taking in class. My job consists primarily of emailing people and making lists on my computer. I like to read blogs and look at Facebook for leisure, and even that requires clicking and scrolling. Sometimes I like to play video games to relax, which requires hands. You need your hands to cook, to eat, to open doors, to carry things, to hold open the book you’re reading. You even need your hands to zip up your pants! And, as much as I would perhaps like to, I don’t have time to sit around watching movies with my hands on my lap all day! I have too much work to do! But, on the other hand (ha! wish I had some other hands!) how on earth am I supposed to get my work done with this much pain in my hands?

Dilemma. I'll take suggestions if you've got 'em. Because I am all out of ideas.

Monday, September 21, 2009

Hand Hurt

My hands hurt. A lot. Too much to type about it. ~;o(

Saturday, September 19, 2009

Little Z vs. The Vampires

I just talked to my mom on the phone. We were talking about my last blog post, and my mom told me I was brave for even considering dealing with the needles myself. Then she reminded me how I used to deal with needles when I was I kid:

When I was little I had to get blood drawn every once and a while for my original autoimmune problem (hypothyroid disease). My mom said I used to hide in the closet when she tried to take me to the doctor. Then, when she finally got me there, I would call the nurse a vampire and tell them that they only got one bite!

So, yeah, I guess I've made some progress since then.

Friday, September 18, 2009

To Syringe or Not to Syringe?

On Wednesday I had an appointment with my rheumatologist. I think it may have been the first time ever that I have been able to report to him that I am actually doing pretty ok. I mean, my joints still hurt every day, but usually they don’t hurt as much as they did a year ago. I still wish I had more energy, but at least I have enough energy to get myself out of bed and back to class. I still get tired way faster than everyone else my age, but at least I have enough stamina now to do some of the things I enjoy. I know “ok” might not sound like a victory, but it sort of feels like one to me. Compared to the last year of my life (which, let’s face it, sucked a very great deal), I’m actually pretty happy with the way things are going right now.

Don’t get me wrong – I still have pretty bad days once in a while. Yesterday was one of them. On top of me still feeling quite tired and sore from the wedding last weekend, it was a really long day of work and class. There were some really good things about yesterday: I got to see a classmate’s very first ultrasound and meet another classmate’s seven-month-old little girl, which was wonderful. I love babies and I am so happy and excited for both of them. But, considering my current level of exhaustion and soreness, it really got me thinking about how I would ever be able to be a mom myself, feeling like this. Later that evening, I was trying to help APL change the sheets on our bed, but my hands hurt so much I could barely pull the sheet over the corner of the mattress. Combined with my worrying from earlier, the fact that I was having trouble doing such a little thing made me burst into tears. I cried for at least half an hour over how unfair everything felt at that moment.

So, while things are certainly better than they used to be, I have to admit that I still have a lot more trouble with pain and fatigue than I would ultimately like. When I met with the rheumatologist the other day, I told him as much. He said that there are still some changes we can make with my meds that may cause additional improvement. On the one hand, I don’t really want to mess with my meds too much, since for the most part I am doing ok and I am mostly able to get back to my own life. I really wouldn’t want to make a change that might make things worse. But, on the other hand, less pain and more energy would really make a big improvement in my life.

Unfortunately, I’m not sure that I’m all that thrilled with the next step my rhematologist suggested: injections of methotrexate. By syringe.

Methotrexate is basically the RA drug. The way I understand it, if you have RA, you are pretty much on methotrexate. It prevents joint destruction and it usually compliments the other treatments, like Remicade and ENBREL. I have been on it pretty much since I was diagnosed. Currently, I take six pills of methotrexate once a week. But, since people’s bodies absorb pills in different ways, it makes sense that an injection might produce better results. Still…that syringe.

Now, I know I have injected myself with ENBREL 17 times already. But ENBREL comes in an auto-injector, like a big fat pen. I just push it against my thigh and press a big purple button. Then I hold my breath for the 15 seconds it takes for the medicine to be delivered. (Quite honestly, it is the longest 15 seconds of my life every single week!) But all I have to do is push a button. I never even see the needle.

Methotrexate doesn’t come in an auto-injector. You have to use a regular syringe. Which means obvious needles. First you have to stick the needle in the bottle and fill the syringe with the right amount of medicine. Then you have to stick the needle into your leg. Then, as I understand it, you have to pull back on the stopper a tiny bit to make sure you didn’t hit a blood vessel. And then you have to plunge the stopper yourself to dispense the medicine. It’s a pretty different process than simply pressing a big purple button. And much more needle-intensive.

Ultimately, I know that I can handle the syringe (or make myself handle the syringe) if it is really going to make me feel better. But it still gives me the jibblies. For the time being I am sticking with the pills. When I run out of pills, I’m hoping I’ll feel brave enough to try the syringe and that it will be worth the extra trouble.