Thursday, March 24, 2011

Tools of My Trade?

I am a professional Research Fellow - I have ten chapters of a textbook to edit and update, 2 grant proposals to complete, and 150 emails to send and respond to...and those are just the things at the top of my list!!

But I also have RA in my hands, De Quervain's tenosynovitis in my right hand, and extra pain in my left hand for the slack it has been picking up by trying to rest my right hand.

Even though my hands seem to become more useless by the day, almost my entire job depends on my ability to use the computer. And, even though I am only half time (meaning I ought to have plenty of time to rest my hands) my leisure activities - like updating this blog and oh, say, planning my wedding from out of state - also require the use of the computer. 

The computer is quickly becoming my biggest hurdle.

So today I came to work prepared with an armory of "tools" to try to help my hands get through the day - compression gloves, a thumb brace, a wrist brace, and cut-off gloves for extra warmth. None of these tools make a very good fashion statement (or look particularly professional, for that matter). In my purse I also have aleve, prednisone, vicodin, and topical anti-inflammatory. 

But I'm still not accomplishing as much as I would like to.  Which is frustrating.

I feel like I've really worked hard on adjusting what I expect from myself since my RA diagnosis, but sometimes it's still really hard for me. Not to mention that resting your hands is basically equivalent to literally doing nothing. And, as anyone who knows me personally will tell you, I am not good at doing nothing - I always like to be productive.

However, the more I use my hands, the less productive I become - even with all the support tools I can think of. Somehow I have to convince myself that it is actually productive to spend some time laying on the couch and watching TV so that I don't go crazy while I rest my hands, even if it results in be getting behind in my work. 

But I haven't yet figured out how to convince myself.

Wednesday, March 23, 2011

Arthritis, pregnancy and the path to parenthood

With our wedding just over two months away (66 days, to be exact!!) APL and I have recently been spending some time talking about what our lives might look like after the big event. Seeing as APL has been there every step of the way since my diagnosis, we already know how to make our relationship work within the confines of my RA. So when it comes to talking about "life after marriage" and my RA, the topic of conversation is almost always starting a family. 

Once time APL and I got stranded in Mississippi because the wheel practically fell off the tent trailer we were towing (this is related, I promise!). Repair of our broken wheel required the mechanic to use a blowtorch to cut through the wheel's lugnuts and then he had to solder on new nuts and bolts in such a way that the wheel would still turn. When the mechanic finally returned the trailer to us and we asked him how it went, he replied: "it weren't no easy task!" 

This sentiment basically sums up how I feel about contemplating pregnancy and RA at the same time. No matter when we decide to try it, it is certainly not going to be an easy task. In order to safely conceive a child, I will have to spend months and months without drugs that I have become totally dependent on to function - drugs that protect my joints from damage (methotrexate, as far as I can tell, is the nastiest in this regard because it takes forever to get it out of your system). How am I supposed to go without my treatment?!? I remember how unpleasant that was!! And then, back in that unpleasant, untreated state, how am I supposed to feel well enough to, ahem, make a baby in the first place?!? And then there's the possibility of a post-birth flare when you have an infant to care for!!! And the need to continue to stay off your treatments if you want to breast feed. All in all, a lot of things to consider.

So, considering we have started to discuss these topics, it was really interesting to get a newsletter from the Arthritis Foundation the other day with a link to this article. It was an interview of an Australian woman named Suzie May who wrote a book entitled Arthritis, pregnancy and the path to parenthood. The article led me to Suzie May's website, where I found myself engrossed in the Why This Book section. Her reasoning behind writing the book seemed to echo my concerns that it is easier said than done to just "stop taking RA drugs and get pregnant." The more I read about the book, the more I decided it was something I wanted to have on my bookshelf for the day APL and I decide to start a family.

I ordered the book directly from Suzie May in Australia - and it even arrived with a handwritten note from Suzie herself thanking me for my purchase. I wasn't originally planning to read it right away - I was going to put it on the shelf until such a time that it seemed more relevant. But I found myself engrossed when I started flipping through the first chapter, which explains Suzie's diagnosis story. She was diagnosed at age 27 (hey - that's not far from how old I was!), she was in law school at the time (so was I!), the pain started in her feet (so did mine!), and she spent a lot of time adjusting her career aspirations to the realities of her disease (just like I am doing right now). By the time I reached the end of the first chapter I was literally in tears over how much I felt like this stranger - literally halfway around the world from me - would be able to understand my life.

So I read the whole book, cover to cover. The book confirmed my suspicions that it won't be an easy task to deal with RA and pregnancy/motherhood - Suzie takes pains not to sugar-coat any of the difficult parts. Still, the book also confirmed my suspicions that, when we're ready, it will be a process that will be totally worth it. And, just the way I know APL will always be right there with me when the time comes for us to start a family, now I also know I'll have Suzie on my bookshelf, ready and waiting with advice and support when I need it.

Tuesday, March 22, 2011

Kids Get Arthritis Too

Regardless of the outcome of my somewhat awkward telephone interview to work as a counselor at Camp JRA in Pennsylvania, I know I would still really like a chance to work with kids dealing with JRA and other arthritis-related chronic diseases. I can't say I know what it is like to be a kid with arthritis, but I do know what it is like to deal with joint pain and fatigue every single day. And, seeing as I know how to stay positive and I haven't let RA stop me from accomplishing my goals, I think I would make a really great role model for kids living with arthritis. On a more personal level, I also think I could learn a lot from a chance to know and connect with such brave and amazing kids. I think I could help them, and I think they could help me. 

After my phone interview, I got an email from the director of Camp JRA recommending that I look into volunteer options at the Rocky Mountain Chapter of the Arthritis Foundation. So I did just that. Though not as obviously advertised as Camp JRA, it turns out that the Rocky Mountain Chapter also hosts a camp for kids with arthritis related diseases in Estes Park, which is only about an hour from my house!!

So I sent off an email to the Director of Programs to ask about volunteer opportunities, and I was super delighted when she invited me to meet her for coffee!! I met her today and I was even more delighted to discover that it looks like there are several opportunities for met to get involved with JRA kids and the Arthritis Foundation right here in Colorado. I can't wait to hear more from her about how I can help!

The more I learn about kids dealing with arthritis, the more I want to meet them and learn their stories and find positive ways to help. Here are just a couple of amazing kids that inspire me:

The Siren Song of Prednisone

I sincerely dislike prednisone.

I really hate the side effects: high blood pressure, insomnia, tooth decay (!?!?!), weight gain, and, perhaps worst of all, fat face (NOTE: most people call fat face "moon face," which I suppose sounds a lot nicer. But I'm calling it like it is! Or, at least, how it made me feel. See the picture on this post for an example - the left is me after a year on prednisone, the right is me after a year off prednisone.) I really hated that a drug that was supposed to be making me feel better actually ended up making me feel worse about myself and my already over-complicated body. 

Which is ultimately why I decided to stop taking taking prednisone over a year ago. And I'm really proud to have been off it for more than a year, because I feel like I've proved to myself that I can control my RA without the use of prednisone. Which also means I can have RA and be happy with my body too. 

But, even more than the unpleasant side effects, I think what I absolutely hate most about prednisone is that it works. And while you would think finding something that works for the pain would be a good thing, it really isn't because of how awful I felt while I was on it. But unfortunately I have encountered nothing else, not even vicodin, that helps with the joint pain and associated inflammation of RA as much as prednisone does.

Which is why, after a full year without it, I've given in to the siren song of prednisone once again. The pain from the De Quervain's tenosynovitis is absolutely killing me. It hurts all day long. As Nessie commented on my last post about this problem, it hurts to button my shirt and pull on my pants and open doors and type and use a mouse and...the list is seemingly endless. It's getting to the point where I have almost completely lost the use of my right hand, and the pain is really impacting my ability to be productive at work. Unfortunately, the high dose of anti-inflammatory drugs I've been on since last week doesn't seem to be helping at all. And my rhematologist's next suggestion? Prednisone.

It's a short-course dose - only 10 days - so hopefully I won't experience any extreme or extended side effects in that short time period. And I actually have every confidence that it will help control the pain - like I said, prednisone actually works.

But I have to admit that my confidence in myself is a little bit shaken. More than a year ago I made the difficult decision that the negative effects of prednisone outweighed the positive ones. This was a decision that was based on months of thinking and suffering and hating my body. But I've now thrown that decision right out of the window because of just one painful hand. 

I only accepted this dose of prednisone because it is short and I think it will work, but what if it doesn't? Will I try more? Will I go back down a path I already decided I didn't want? 

I really hope not.

Friday, March 18, 2011

I Really Heart Pilates! (An Extremely Overdue Post!)

In the 2+ years since getting diagnosed with RA, I have tried a ton of different things to help me adjust and accept RA as a permanent part of my life - both physically and mentally. I've been through a lengthy process of trial and error to find the right meds to keep my disease physically under control. I've spent a lot of time reading blogs and learning from others dealing with RA. I've invested in tools to help make particular tasks easier. I've experimented with nutrition and even tried being gluten-free for six months.

I took a seminar on methods of Mindfulness Stress Reduction. I tried seeing a therapist. I tried seeing a psychiatrist. I tried joining an autoimmune support group. I experimented with physical therapy and acupuncture and massage therapy. I've tried gentle swimming and slow hiking and riding a stationary bike. And no matter what I'm trying, I always try to remember to keep laughing.

But, after 2+ years of experimentation, if someone asked me to pick the one thing that most helps me deal with my RA - both physically and mentally - I would say, without any hesitation: pilates.

While I think any type of pilates could potentially benefit someone with RA, more specifically I would recommend one-on-one pilates with the same instructor who can then learn how to work within the specific limitations of your body. Private pilates lessons can be a  real splurge, but in my experience it has been 110% worth it!

About nine months ago, I took a deep breath, walked into Boulder Bodyworks, and blurted out that I had RA and needed help staying active within the confines of my achy joints. Even though taking that first step was extremely difficult, I couldn't be happier that I did. I have been going to pilates once or twice a week ever since!!

Physically, pilates has really helped me build strength. My instructor helps me do slow and precise movements, with the help of a lot of springs and straps and bars, which make the exercises as low impact as possible on my achy joints. Once or twice I have felt a little bit extra achy afterwards, but when that happens I just talk to my instructor so she can can figure out where to draw the line of what is too much for me. For the most part, pilates makes me feel energized and much stronger. And when my muscles are stronger my joints hurt less! 

While I expected pilates to have the potential to help me physically, I had no idea how much it could help me mentally. For one thing, even though most of the exercises are slow and done laying down and with lots of support, I've lost a lot of weight since I started. Believe it or not, my prednisone weight is gone!! So it has made me feel a lot better about the way my body looks.

But even though pilates has given me strength and better body image, I think the most important thing it has done is to restore some trust in my body. My pilates instructor has helped me learn that, though my body may be limited in certain places, there are lots of things that I still can do. Some days I go in there and I feel like a rubik's cube - I have to tell my instructor that my right hand and left foot hurts and my neck is sore - and I wonder what on earth she will come up with that I will actually be able to do. But you know what? She always comes up with something I can do. No matter how sore and painful and complicated I am, she has taught me that there is still always something I can do to improve my situation. She's helped me discover and strengthen muscles I didn't even know I had. And even on days when we can only do very small movements, I always leave pilates feeling like I have accomplished something positive with my body - and I honestly can't remember the last time I felt so positive about the things my body can do.

I can't thank my pilates instructor enough. And I can't wait to see her again next week!

Thursday, March 17, 2011

De Quervain's Tensosynovitis

De Quervain's tensosynovitis. I can't say it three times fast. In fact, to be honest, I can hardly manage to say it at all. And yet, apparently, I have it.

De Quervain's tenosynovitis (duh-kare-VAHS ten-oh-sine-oh-VIE-tis) is a painful inflammation of the tendons on the thumb side of the wrist, and if you have it "you're likely to feel discomfort every time you turn your wrist, grasp anything or make a fist." I don't know if you've ever thought about just how many times a day (or even an hour) you "turn your wrist," but trust me - it is A LOT.

I've been dealing with this pain every time I move my right hand for weeks and I've tried everything I can think of to make the pain stop. I've iced my thumb and wrist. I've soaked my hand in cold water and hot water and Epsom salts. I've warmed my hand with paraffin. I've wrapped it, braced it, tried to use it as little as possible, tried to stretch it gently, taken anti-inflammatory and pain-killing drugs...all to pretty much no avail. So I finally caved and called my rheumatologist, and he diagnosed me with de-qu-whatitis-itis.

Also known as "washerwoman's sprain" or "mommy thumb," most people get de Quervain's tenosynovitis from repetitive hand or wrist movement - like washing clothes by hand or constantly picking up and carrying a baby. (Turns out it is also a lot more common in women, hence the sort of sexist nicknames). More recently, the syndrome has been dubbed "Blackberry Thumb" for people who get it from too much texting. (And one of my friends rather rudely suggested calling it "Handjobitis")

But I didn't do any type of repetitive motion to trigger this pain. Apparently (lucky me!) if you have RA, you can get de Quervain's tenosynovitis for absolutely no reason whatsoever!!!

RA you never cease to surprise me. 

Thursday, March 10, 2011

On Guilt

I've been catching up on the blogs that I love and discovered this really thoughtful and interesting post by Helen (of Pens & Needles) on the subject of guilt. She considers whether people with chronic illness contribute (knowingly or unknowingly) to making others feel uncomfortable about our illness. She suggests that the only way to move forward is to explain your illness and "try not to flinch." I think i's a really insightful post.  If you've ever felt guilt or shame from dealing with social attitudes toward sick people, I highly recommend reading this post.

Phone Phobia

I don't like to talk on the phone. 

It's been true all my life. Just ask my friend LK - we've been best friends since kindergarten and now we live in different states, but we hardly ever talk on the phone and we really never did. There's something about being on the phone that feels really awkward to me - like I'm not quite myself. And I seem to have trouble expressing myself over the phone, like I can't think fast enough or make the words come out straight, especially with people I haven't actually met in person.  

Because being on the phone generally makes me feel uncomfortable, I tend to avoid talking on the phone unless absolutely necessary. And, much to the chagrin of my family, I often fail to pick my phone up all together. Just ask my sister - she regularly calls APL's phone when she wants to talk to me. So maybe you can imagine how I felt when I discovered I would be participating in a phone interview yesterday. 

I recently applied to volunteer as a counselor at Camp JRA, a summer camp for kids with arthritis and other rheumatic diseases. The camp is designed to teach kids how to take control of their health conditions, but also gives kids a chance to have fun and participate in activities in an environment where they won't be judged. It looks pretty awesome. I'd really like to get involved because I really enjoyed giving back to the arthritis community during the Jingle Bell Walk. I also feel that my accomplishments and ability to stay optimistic since getting diagnosed with RA would make me a good role model for kids dealing with similar illnesses. From a more personal perspective, considering how much I have learned from an 11-year-old that I've never even met, I think these amazing kids would have a lot to teach me as well. It's something I would really like to be involved in.

So I was a little disappointed with myself after the phone interview yesterday. For starters, I was frazzled before it even started because I almost missed the call due to trouble with my phone. About 10 minutes before, I plugged my phone in to my laptop to make sure the battery would last through the whole interview. But I forgot that I had downloaded the new version of iTunes, so instead of just charging the battery my phone started reformatting, which took several minutes and almost didn't finish in time. So I was nervous from the start.

On top of that, though I actually have considerable experience working with kids (tutoring, teaching swimming, coaching, Girl Scouts), it didn't help that it has been quite a few years since I last had the opportunity to work with kids. Since my recollections of these experiences are less clear, I had a little trouble answering some of the more detailed questions about working with kids. Which, of course, only increased my nervousness - resulting in a semi-horrible feedback loop. 

While I really do think I'd make a great camp counselor, especially for kids dealing with rheumatic diseases, I don't know how well I actually managed to express that in the interview. I hung up the phone with a feeling of awkwardness and a certainty that I hadn't really put my best self forward. I hope I still get the opportunity to volunteer, but I'm not sure I'll be selected.

Ultimately, I'm sure the camp staff will make whatever choices they think will bring the best camp situation for the kids - which is really what is most important here. And, even if I don't get selected, I'll feel like I accomplished something by going outside my comfort zone for a really good cause.

Sunday, March 6, 2011


Apparently it has already been March for six days. Which leads me to the following question:

What on earth happened to February?!?!?

February was a crazy month. I have been so very very busy - it's a wonder I haven't crashed completely (knock on every piece of wood ever, please). The month started out with a weekend in Santa Fe, followed immediately by a week of wedding planning in California (thank goodness, the tick bite turned out to be uneventful. Phew!)

But neither of those were even the big event of the month! The big event was APL turning 30 on February 18th, and his 30th Birthday Extravaganza Weekend!! Since it fell over a three day weekend, we were lucky enough to have APL's brother and his girlfriend fly in from DC, my sister and her boyfriend fly in from Seattle, my brother and his girlfriend fly in from LA, and three other friends fly in from California. I had eleven people sleeping in my three bedroom townhouse that weekend!! It was a lot of work to prepare for, feed, and clean up after that many people, but everyone pitched in and it was so worth it because everyone had such a good time.

The weekend started with APL's birthday surprise - a 2 hour snowmobiling tour! APL was extremely excited - it was highly adorable. I specifically picked snowmobiling because I figured it was an activity that I could easily participate in (as opposed to, say, skiing or snowboarding). But I wasn't super confident about having to use my hands to squeeze controls or steer, so I decided to ride on the back of APL's snowmobile. We had perfect weather that day and a ton of fun snowmobiling. However, I have to admit that I wasn't entirely right about it being an activity that was ok for me - there was a lot of gripping to hold on, leaning on the turns, and just general bouncing that left me pretty sore the next day. But it made me feel a bit better that I wasn't the only one who ended up sore!

We also spent a day with our out of town guests beer tasting in Fort Collin's at Odell Brewing Co. and New Belgium. And we had two nights hanging out with our guests and local friends at our house. Unfortunately I ended up having a lot of trouble with my hips that weekend (related to snowmobiling? Possibly.) so I spent the majority of both evenings laying on a mat in the middle of the living room on a heat pad. But, perhaps surprisingly for the amount of pain I was in, I still really enjoyed myself. I mean, it's always entertaining to watch 30-year-olds (who shall remain nameless!) get so silly drunk that they decide it would be a good idea to slide down the stairs on a couch cushion! Certainly a birthday to remember!

After APL's birthday weekend, even though February is such a short month, I fit in another trip to California, this time to help my very good friend CC pick out her wedding dress. We spent all weekend on the task and I am happy to report that we found "The Dress" for her! Plus, I got to spend some more time getting to know her fiance, which I really enjoyed. And on top of all of that, I've been doing a lot of wedding planning myself and adjusting to my new job.

For the most part I'm holding up to all this excitement pretty well. My hips are still giving me a little trouble, and recently some pain in my right thumb joint has extended to pain in my entire wrist on that side, which is not so good for using the mouse at work (I wonder if I'm going to need another prednisoine shot?) I also had a problem with my new pharmacy last week (after I graduated I lost my student insurance but I was lucky enough that APL's company will cover me as his domestic partner even before we are married) and my last Enbrel shot was four days late, which certainly doesn't help. But I've been going to pilates once a week and it has been a godsend for keeping me going and making me feel stronger (I promise a post on pilates soon!)

In the meantime, I'm going to try to take it a bit easier in March or I'll never make it to April!!