Thursday, June 24, 2010

My LAST Law School Class

Today was my very last law school class! Ever! Now there is only one 3-hour law exam standing between me and my J.D!!! And when I pass that exam next Friday, I will have earned my J.D. despite the fact that I got diagnosed with RA right in the middle of law school.

Because I'm a dual degree student I won't technically receive my J.D. until I also finish my Masters next December. But one thing is for sure:

I never have to go to a law school class again!!!!

Wednesday, June 23, 2010

Pharmacy FAIL!!

Remember that saga where I was forced to learn how to use a syringe against my will because the pharmacy screwed up and gave me syringes accidentally? Well, today the pharmacy has totally outdone itself in unprofessional stupidity. 

When I first started using the syringes, I actually thought that they hurt less than the auto-injectors, so once I got started I was pretty happy using them. But then I started having trouble with giving myself the injection. I don't know if I became too nervous or not nervous enough, but the injections really started to hurt. And I was having a hard time pushing the plunger all the way down. And more than once I ended up with big red welts at the injection site. I don't think it helps that I am feeling less enthused about ENBREL in general these days either. In any event, more than 8 weeks ago, I decided it would be best to go back to the auto-injectors. 

So I called the pharmacy to order refills. I specifically told the pharmacist that I wanted to go back to using the auto-injectors. For starters, they had no record of me even having syringes. All of their records (including my actual prescription!) said that they had actually given me the auto-injectors. So they had no idea that they had even given me syringes in the first place, despite the complaint I had submitted by email and the long discussion I had with the pharmacist about their error. I don't know what on earth kind of records system that is!! But I confirmed that I would be given the auto-injectors this time and asked when it would be ready.

I was still in California when it came time to pick up the prescription, so APL went and picked it up on his lunchbreak. It wasn't until he got home and put it in the fridge that he noticed that they had mistakenly given me the syringes AGAIN. APL sent an email complaint and I called the pharmacy to complain. First they said that APL should bring the syringes back and they would switch them, which, if you recall, they were totally unwilling to do the first time they gave me the syringes by accident.  But APL had already used his lunchbreak so I just stuck with the syringes, which I've still been having trouble with. 

I also spent at least half an hour on the phone with the pharmacist, making sure all my records were marked properly and talking about what precautions they could take so that this would never happen again. I mean (a) they essentially gave me the wrong prescription, which is really dangerous, and (b) they had done it more than once, which is really unprofessional and (c) they gave me my medicine in a form I specifically told them I wasn't comfortable with, which is just not cool.

This past Monday, I called again for my ENBREL refill. Again I requested the auto-injectors and again was assured that my prescription called for auto-injectors and that's what they would prepare for me. The pharmacist on the phone even claimed to check to make sure they actually had auto-injectors before she hung up with me. I was feeling pretty optimistic.

Alas, I was seriously mistaken in my optimism. Today I went to pick up the ENBREL and they tried to give me syringes again!! This is the THIRD time they have given me something OTHER than what my prescription calls for and OTHER than what I have specifically requested. Despite two email complaints and multiple conversations with the pharmacist specifically about this issue!! What. The. Hell!! Isn't the pharmacy supposed to be helping me deal with my RA instead of making my life significantly more frustrating??

And the moral of the story is: I'm getting a new pharmacy.

Her Diamonds

This morning my cousin sent me this article about the song "Her Diamonds" by Rob Thomas (from Matchbox 20). The song is about his wife, Marisol Maldonado, and her battle with a rare autoimmune disease.

Here are some of the lyrics:

And I don't know what I'm supposed to do
But if she feels bad then I do too
So I let her be
 And she says ooh I can't take no more
Her tears like diamonds on the floor
And her diamonds bring me down
Cause I can't help her now
Since autoimmune diseases, like RA, are pretty much invisible, it can be really hard to tell when someone is suffering from one. But I think it's even more difficult to tell when someone is suffering because a person they love has an autoimmune disease. In our situation, the RA may have physically happened to my body, but it has affected APL's life just as much as it has affected mine. It has significantly changed his future too.

Nevertheless, he has been there with me every step of the way. And, on bad days, I know exactly how lucky I am. When I feel really bad or have acted really grumpy towards APL, I can't help thinking that while I don't have a choice about having RA in my life, APL does. But, no matter how rude I've just been to him, he always tells me that he loves me and wants to be with me.

Which is why these lyrics, from another song Thomas wrote for his wife, "Ever The Same," struck me too:
You may need me there
To carry all your weight
But you're no burden I assure
You tide me over
With a warmth I'll not forget
But I can only give you love
I love you, APL.  I am so very lucky to have you!!

Monday, June 21, 2010


Before RA, I never worried about exercise or weight loss. I played water polo and was generally an extremely active person - swimming, hiking, playing outside, running around with River. Because I was so active, I was lucky enough to never really have to worry about my weight. 

But since the RA started, I've had a lot of trouble exercising. Either I'm too tired and achy to get myself to do anything at all, or I try to exercise just like I used to and I end up hurting myself or overdoing it. Due to this lack of exercise (and thanks in large part to taking prednisone for a year straight) I've gained a lot of weight. I know I'm not obese or anything, and I know that some amount of weight gain is totally reasonable given my situation, but I just don't feel good in my body anymore. I don't care what the number on the scale is - I just want to feel good about myself (and possibly fit into my clothes if that's not too much to ask).

So last weekend APL and I did some research and ended up going to talk to Boulder Bodyworks, a studio that offers private yoga, pilates, and physical therapy. We figured, with that basis of knowledge, that they would probably be able to help me figure out what I can do with my body within my limitations. We showed up there, unannounced, and I basically spilled my guts about my problems to the people who happened to be at the front desk. I told them about my RA and the trouble I've been having being active at all. I said I really needed help. It was not easy for me. At all. 

But I was rewarded for my trouble with a call from the owner, who said she wanted to meet with me. We sat down and talked in more depth about my issues, and she even showed me some of the exercises I would do in a private pilates lesson.  It was super nice of her to take the time to meet with me in person (it was Sunday and she was supposed to be on maternity leave) so she could match me up with an instructor who would be able to understand where I was coming from. I ended up signing up for 10 private lessons to see if I can get myself being a bit more active again.

Pilates, for the record, isn't really what I thought it was at all. I guess I thought it was some sort of aerobics, but in reality it is really more like slow and precise movements and exercises. Sort of like physical therapy, but with a focus on the whole body rather than just one part of it. It can also be done with the help of a lot of equipment. The equipment really looks like torture devices (springs and straps and bars) but I have found it to be really very useful in making the exercises low impact on my joints.

So far, I have been to three lessons. I honestly didn't want to go to any of them, because I've been feeling tired and achy lately, but making the commitment of paying for the lessons  actually got me to go. And, although the lessons themselves make me a bit tired and achy, I'm glad that I went. Actually, I've found that I can do more with my body than I thought I could. With a little help, at least.

Friday, June 11, 2010

Rheumatologist Appointment

On Tuesday morning I broke down and called the rheumatologist to ask if there was any way to fit me in before next week because I just felt so gross. They got me in on Wednesday afternoon, which was awesome. I have to give my rheumatologist (and his awesome nurse) credit for always responding to me quickly when I finally work up the nerve to let them know I'm struggling.

APL also left work early to go with me, which was also awesome. Sometimes I get really overwhelmed at the doctor's office and forget to tell or ask the doctor things I meant to. Generally, APL and I sit down the night before an appointment and make a list of things to ask about, but sometimes I forget things even when I have a list, so having APL there is really helpful. Plus, sometimes he remembers stuff that I forget or that wouldn't occur to me to say. And just having him there makes me feel better. So I'm really grateful when he comes with me.

We told my rheumatologist about how I have been feeling and he did an exam of my joints. None of them were really swollen and of course my knees weren't actually hot while I was there (why would my body cooperate like that?) so he had to trust us on that one. We talked about  the possibility of switching from Enbrel to Orencia, Rituxan, or Actemra, but he was reluctant to do so because he thinks the RA itself was actually under fair control and that there could be other causes for my current pain and malaise. 

We  took x-rays of my knees (and, while we were at it, of my feet and hands to check for  RA damage) because he thinks that patellofemoral pain may be a contributing factor of my knee pain. This has something to do with how the patella tracks along the groove of the femur. Considering that I have definately already had trouble with my patella, this seems pretty reasonable to me. As I understand it, a possible cause of this pain can be weakening of the muscles that work your knees, which also seems reasonable considering I've been much less active over the past two years. Apparently he will be able to tell whether this is likely from the x-rays, and if it is then I will need physical therapy to help with that pain. If it isn't, well we'll cross that bridge when we come to it.

He also ordered blood tests to check for other causes of the fatigue. But, if those turn up negative, he seems to think my "malaise" is caused by depression. I honestly don't like this idea because I do feel like I'm doing a lot better and feeling a lot happier, and I certainly have less stress since the semester ended. But I'm sure my rheumatologist is more experienced with watching patients adjust to an RA diagnosis. 

As much as I would really like to take fewer drugs instead of more drugs, I mostly just want to feel better. My rheumatologist says that there are some anti-depressants that have been shown to help with pain as well, so I guess that sounds pretty good. So we're trying Cymbalta, which is prescribed for depression and general anxiety disorder but also for diabetic nerve pain and fibromyalgia (which, as far as I understand it, is major pain with  a pretty much unknown cause). 

Even if I actually need the drug for depression, I have to admit that it somehow makes me feel better that it is also used to treat pain. I guess that's because I don't want depression. I want to be able to say "it must have helped with the pain" if the drug makes me feel better. I don't want to think of myself as depressed. I want to be happy. I want to be healthy. I want to be doing a good job handling everything that is happening to me and my body. But I guess I am actually doing a good job handling everything that is happening to me and my body. Asking for and accepting help is part of doing a good job.

However, I also have to admit that I really had mixed feelings about putting this depression treatment in this blog. It somehow feels more personal than the bloody belly-button (though I'm sure some of you will disagree!) But these struggles are certainly part of my RA journey, even if I don't completely understand them myself. And the purpose of this blog is to help me figure myself out and to be an honest record of my RA journey. I'm trying to accept the fact that it's ok for me to struggle. I want to be ok with needing help and asking for it. I'm not there yet, but I'm trying. And if putting my own struggle on this blog helps someone else with theirs, even a little bit, it's worth it.

Sunday, June 6, 2010

Bubble Wrap

Well, I really hate to admit it, but I think it's official: something is not right with my joints and the medicine doesn't seem to be helping.  I just did an Enbrel injection yesterday, but I don't feel any better today. Actually, I feel worse.


In particular, my toes, ankles, elbows, and knees have been aching a lot. Oh, also my wrists and fingers. And shoulders. And hips. (Do I have any joints left that don't ache? Hmmm...knock on wood)

None of these joints are particularly swollen, which seems a little weird to me, but they all hurt. My knees are also hot to the touch most of the time. And my joints have also been cracking whenever I move. When I walk downstairs, it sounds like the stairs are covered in bubble wrap - which is a pretty hilarious thought until you actually think about it.

I also spent all day on Friday, laying on the couch feeling...icky. I can't really think of a better way to describe it. I just felt gross all over. In every, single way. I couldn't really get up or accomplish anything. Even watching TV felt like a little too much effort. I thought I might have had a fever. I believe this is the delightful feeling that doctors term "malaise." APL calls it "feeling like balls." Excuse the language, but at least it makes me smile.

I also did something this morning that I generally try to keep myself from doing, especially when I'm feeling unwell: googling RA. Through the magic of the interwebs, you can convince yourself you have any disease or syndrome in the world if you google it enough. Particularly since there are so many blogs and websites offering health advice - generally with all the best intentions in the world but without medical degrees. 

This blog, of course, is not intended for use as a source of health advice. This blog is nothing more than a record of my personal experiences after being diagnosed with RA two years ago and my own, personal thoughts about my RA experience. I hope it comes through in my writing that these are my experiences, and I recognize that others with RA will undoubtedly have different ones.

But if I can offer some advice?  If you have RA (or any illness, for that matter) don't google it. Particularly on a day when you're already feeling icky (or dealing with "malaise" or "feeling like balls.") I promise google won't make you feel better.

Friday, June 4, 2010

Second RA Anniversary

It's June again. I honestly have no idea how that happened. Where on earth does the time go? But I am now 27 years old and it has officially been two years since I was first diagnosed with rheumatoid arthritis. 

The first year of my RA diagnosis was hard. Really hard. All at once I was forced to figure out how to go from being a ridiculously overachieving dual degree graduate student (who also worked two jobs and played on a water polo team) to being a more reasonable dual degree graduate student who was also figuring out how to deal with a chronic and painful illness. This transition hasn't been easy. It's something I still work on every single day.

The second year of my RA diagnosis has had its major ups and downs too. We ultimately gave up on Remicade and moved on to Enbrel. I've dealt with a lot of physical pain, including hand pain, wrist pain, stabbing pain in my hips, more hand pain, more hip pain, and major troubles with my knees. I've had skin rashes, split lips that refused to heal, strep throat, and, my personal favorite, the bloody belly button. I've struggled a lot with fatigue and insomnia

All this pain resulted in high doses of prednisone and a lot of vicodin. High doses of prednisone led to weight gain and feeling really fat. Weight gain led to high blood pressure. Blood pressure medication lead to a hacking cough. Eventually, I decided to stop taking prednisone because of its negative side effects, but stopping had some nasty side effects of its own and ultimately resulted in me having to deal with more pain on a daily basis. 

Over the past year I've been extremely grumpy about silly things.  I feel like I'm always dealing with too many doctors and too many needles. I still haven't figured out what my boundaries are and how much work I can handle without making myself crash. As a result, I had to drop a class because I overestimated what I was capable of. I've had some had some really difficult and depressing days where I just wanted to give up. At one point, I felt like I had completely lost my focus in school and life. I even had my psychiatrist chastise me and tell me it was my own fault that my body was falling apart. And I've often taken out this frustration on poor APL, who spent almost the entire year unemployed after he lost his job last May.

But, despite all these difficulties, a lot of good things have happened in the past year too. More good than bad, I think!! I got to see the joy of my dear friend AJ getting married and I even officiated my friends PN & AN's wedding! My sister came to visit. I survived my first semester back at law school after taking last spring off, and I even organized and managed a huge international law conference with 40+ speakers and 200+ attendees. I learned how to use an autoinjector and eventually managed to use a syringe all by myself. I've really tried to work on being positive even when things suck, and finding reasons to feel happy even when I feel crummy. 

Despite dealing with RA, I've gotten to do a lot of traveling in the past year, which is something that I really, really enjoy. We traveled a lot in the U.S. this year. We went to the Great Sand Dunes with friends, and APL and I took a spontaneous southwestern roadtrip and also had another adventure in Utah. I visited my family in Florida (which was fun except for the scorpion!) and got to spend thanksgiving in California. I got to spend time in Yosemite and Groveland with my brother, sister, and best friend, and another friend's four-year old taught me an important lesson.

I've also done some amazing international travel in the past year. I carried my Enbrel with me to China, and my mom helped me hike the Great Wall of China!! Austin and I got to spend two days relaxing in Fiji and then had an amazing vacation in Australia and celebrated Christmas Down Under.

It's been a big year for me and APL too!! APL finally got a new job and we celebrated our 7th dating anniversary. Most importantly, of course, we got engaged!! I have a gorgeous engagement ring and we were lucky enough to get some amazing engagement photos, despite me not feeling well that day. I already can't wait for the wedding next May!

I think I've also taken some major steps in openly admitting the changes that having RA has brought to my life, especially considering how scared I was to talk about RA when I first got diagnosed. But  I have to admit that sometimes it is still difficult for me to deal with the fact that everyone wants to hear me say that I am feeling a lot better.  The truth is: I'm not. In fact, just this morning I made an appointment with my rheumatologist because I'm not sure the Enbrel is working anymore. Lately I've been dealing with a lot of pain in my knees, ankles, and toes. My knees, though not swollen, are painful almost all the time and are hot to the touch. As much as I hate the thought of it, it might be time to move on to Treatment Round 3. 

However, that realization doesn't devastate me as much as you might think. I guess I've learned some patience with my body and this process. And I know my friends and APL will always be there to support me, no matter what comes next. I also want to thank everyone who has been reading this blog and showing their support - it really means a lot to me.

And if there's one thing I've learned this year, it's to try to stay positive and keep chugging along! From This Point. Forward!!

Thursday, June 3, 2010

Bloody Belly-Button

Warning: This post is exactly as disgusting as the title makes it sound. Here comes the honesty! You might want to skip this post if you're squeamish. Because, yes, that picture is of blood poring out of my belly button yesterday.

When you get diagnosed with RA, all the doctors and articles tell you to expect joint pain. Most of them at least warn you about fatigue. But I don't think anyone I ever talked to or anything I read ever really explained the potentially bizarre consequences of (a) having a compromised/confused immune system plus (b) taking biologics, like Enbrel, which purposely compromise/confuse your immune system even more.

I swear: more bizarre things have happened to my body in the last two years than in the previous 25 years before that combined. Weird stuff happens to me all the time. My lip spontaneously splits and then refuses to heal. I've had bloody noses that gushed for hours when I never had a bloody nose before in my life. Products that I've used for a million years, like sunscreen, give me rashes. Sometimes I get rashes for no apparent reason. And who could forget the random infection in my boob that had to be cut open and drained and resulted in my first stitches ever being in my boob? This stuff is so bizarre and seems to happen so frequently these days that it almost seems normal after two years. Almost.

But yesterday I discovered a totally new and creative form of my body behaving bizarrely. A funny feeling prompted me to lift up my shirt to discover a puddle of blood completly filling my belly button. Excuse the language but: WTF?

Actually, I had known that my belly button had an infection. How this happened, I have no idea. I'm pretty sure belly button infections are something that should happen to a 2 year old who rolls in and eats dirt, not a 27 year old who showers every day. But I can't  begin to explain my body, I just try to deal with what it throws at me. So I had been putting iodine in my belly button and soaking in salt baths to try to kill the infection. I honestly thought it had gone away. Instead, I bled my own blood until my belly button was like a tiny bloody swimming pool.

I am aware that this is totally disgusting and/or disturbing. But this blog is about honesty and my life since getting diagnosed with RA. At least for me, weird (and disgusting and disturbing) infections have been a big part of my journey. So I'm sharing it. I also took a photo of my disgusting belly button. You're welcome. ~;o)

Adventures in Utah

After a very fun month in California (except for the snake, but luckily Sita is doing much better now!) I am finally back in Colorado. I am also (boo!!) back in law school. However (yay!!!) this summer class is my last law class EVER!!!

I had quite an adventure on my way back to Colorado. It took River and me almost two days to drive from Groveland to Salt Lake City, Utah. This was partly because Tioga Pass, the most direct route east from Groveland, was still closed due to snow. So I had to drive quite a ways north to Donner Pass (yes, the one where the pioneers ate each other). 

I was born a California girl, but here's how I know that I have a little Colorado in my blood after four years: It was snowing a little over Donner Pass, but there wasn't even any snow on the road and it wasn't cold enough to freeze. I put my windshield wipers and defroster on but I didn't even consider putting chains on. There's more snow than that in my driveway on a regular basis! But the Californian drivers were freaking out about the snow. They were backed up going 3mph for probably 2 hours as everyone got in each others' way trying to put chains on. And, after the traffic broke up, I was flying by people at a totally safe speed of 40mph. Everyone else must have been going about 12mph. In any event, I guess I've done enough driving in the snow by now to make it not a big deal to me. But River and I ended up staying the night in Reno because it took so long just to get over the pass.

The next day we finished the drive to Salt Lake City. Then, since APL had Memorial Day off, he flew to SLC and met us there, which turned out to be a really good thing because my knees (particularly my driving knee) have been giving me a lot of trouble. (The stop and go driving over Donner Pass was killer on my bad knee. I probably would have had a hard time making it all the way back to Boulder on my own.) Then, since we had three whole days to get back home, we decided to do some exploring in Utah. We didn't have a plan - just like our spontaneous car trip last year.

So we headed to Capitol Reef National Park, which was extremely beautiful. The weather that day was perfect too. There's a historic Mormon homestead that still makes fresh pie, so we enjoyed  peach pie and vanilla soda and beautiful scenery. Then we kept driving towards Natural Bridges National Monument, which is at least 50 miles from anywhere. It's so remote we figured we'd never just be "in the area" again. But, as the afternoon faded, we discovered that spontaneous car trips with no plan whatsoever are perhaps not the best idea on a holiday weekend. We passed a bunch of motels but they were all full. We arrived at Natural Bridges, which is 50 miles from any civilization, just after dark.

I was afraid that if we drove another 50 miles to the next town there would still be no motel and then we would have driven too far to come back to Natural Bridges in the morning. It was then that I had the brilliant idea of sleeping in the back of our Subaru. Mind you, we had no camping supplies whatsoever. We pulled into overflow camping at the monument (because the campground was also full on the holiday weekend) put the seats down in the back and slept in our clothes under a dog blanket using dirty laundry for pillows and River laying on our legs. There wasn't a lot of room, but the real problem was how hard the back of the seats were. I woke in the middle of the night with so much pain in my hips and shoulders that I thought I was going to vomit. I thought I'd never be able to move again. Perhaps not my best plan ever.

But, when River woke us up at 5:15am as soon as it got light, we both felt surprisingly ok. We were tired and sore, but not as bad as we thought it would be. And we were super happy to get to see Natural Bridges in the light. I guess a good mood can help more than you'd imagine. By 8:15am we had seen all three natural bridges, taken a small hike to see some ruins, seen the first solar panel installation in the country, and stopped by the visitor center to stamp our National Parks Passport. 

Then we drove to Canyonlands National Park. We went to The Needles District this time, which was also really pretty with some crazy rock formations. Utah is a beautiful state. We explored Canyonlands and had some lunch. Next time we want to go back to the Island in the Sky District.

On our way back to the interstate we also drove through Arches National Park. I was fairly exhausted at this point, so I have to admit that we didn't stay very long and we only saw the arches that were visible from the car or a really short walk to a viewpoint. But someday we'd like to go back there and hike up to Delicate Arch, which is the iconic arch that you've probably seen on Utah license plates.

We spent Sunday night in Grand Junction and drove back to Boulder on Monday morning, early enough to beat the evil holiday traffic on I-70. I know I was supposedly resting for a month in California, but now I'm totally exhausted again!! I still haven't quite figured out how to tone down my "adventure instinct" to deal with the amount of energy I actually have. Also, I'm not sure my "roughing it" habits are exactly good for my body these days. But, in any event, we had a really fun impromptu adventure in Utah - even if we did have to sleep one night in the back of our car!