My Hips Are Made of Fire

I've been playing this iPhone game with my friends called "Draw Something." It's basically the Pictionary version of Words With Friends, only much more hilarious because neither I, nor any of my friends, are particularly good artists (especially with our big fat fingers on our tiny iPhone screens). So we've had a lot of good laughs at the expense of our lack of drawing expertise. 

So, in honor of my newly developing Skills of an Artist, I have drawn you this picture of myself and how my hips are feeling today. 

My hips are made of fire.

They are literally hot to the touch and man do they hurt. Tylenol, the approved pregnancy pain killer, isn't doing jack to help. And I just can't seem to find a comfortable position to put them in. Standing or walking around seems to exhaust me and make my hips ache more. Sitting (like I'm doing right now at my desk) is the worst (hence, I won't be doing it for much longer.) The best option seems to be laying down with an ice pack on each hip, but that, of course, is not particularly conducive to getting anything at all done. 

It seems like it would feel good to lay on my belly and push up, bending the hips back in the opposite direction - like that yoga pose - but the baby in my belly most certainly gets in the way of that option. And other efforts to stretch my hips on my own have only resulted in uncomfortable pulling on my belly. I'm going to force myself out the door to pilates this afternoon with the hope that my instructor can help me stretch my hips without aggravating my belly and find me at least a little bit of relief (but my regular instructor, who I've worked with for almost two years now, is out of town - so I'll be working with a new person this week and I'm not holding my breath about the results.)

In the meantime, I guess I'll have to count laying on the couch and watching crappy TV while growing a human as a productive activity - cause I'm not sure my hips are up for much else today. And, while I do that, I'm going to try not to be too hard on myself about how unproductive I feel. Ru Paul's Drag Race here I come! And, as Ru Paul says: If you can't love yourself, how in the hell you gonna love somebody else? Amen, Ru Paul. Amen.

Today's Award For The Best Person On The Planet

First of all, I hope everyone had a very Merry Christmas, a very Happy Hanukkah, and, in general, a wonderful and relaxing holiday season. Check out the present I got this year - the beginning of my baby bump!! ~:o)

Today I went back to pilates for the first time in about a month. I stopped going several weeks ago to make time in my schedule (and in my limited energy) to go to physical therapy multiple times a week to attempt to fix the problem with my SI joint. Unfortunately, as I explained in my last post, that physical therapy experience didn't turn out to be successful. At all. And, as expected, the increased dose of Tylenol my rheumatologist put me on isn't helping significantly either. So I sent a message to my rheumatologist to find out what options I have for the next step, because the pain isn't really getting any better - but my belly is getting bigger! - and I'm worried about the pain increasing as my pregnancy progresses.

In the meantime, I went back to pilates. I am so very happy that I went. My pilates instructor totally wins today's award for best person on the planet! For one thing, after an hour stretching and bending and moving under the careful direction of my pilates instructor, I think my back is actually feeling a tiny bit better. And that is seriously awesome.

But, even more important than that, is how my pilates instructor makes me feel about my body. No matter what kind of crazy combination of problems I bring her, she always manages to find something that I actually can do. And it's never something simple - it's always a challenge. I find myself thinking and breathing hard and actually exercising, but all without much pain because of how precise she is with the movements she asks me to make and how much she thinks about it before she asks me to do it. Instead of giving up on me, my pilates instructor seems to deal with the complicated set of issues I bring to the table as a challenge that she is excited to face and figure out. Granted, she has had a year and a half to get to know the crazy that is my body, but she has been up to the challenge since day one. She makes me feel empowered that I can actually take control and do something about the issues my body throws at me - and that is worth more than anything else.

And I am so, so, so grateful.

Third RA Anniversary

I have so many posts to write about the wedding and the honeymoon - and I will get to those soon, I promise! But, before I do, I need to write this post! Because somewhere in the middle of all the wedding madness, my third RA diagnosis anniversary passed without me even noticing. It seems hard to believe, but I am now 28 years old and it has been three years since I was first diagnosed with RA.

At the beginning of this year I had some doubts about whether the Enbrel was working for me - but ultimately I ended up staying on it. I was on cymbalta for a while too, to cope with depression and frustration over my limitations. This year I have dealt with bad knee days, hand pain, even more hand pain, until eventually I was diagnosed with De Quervain's tenosynovitis in my right hand. The first flare was the most painful, but I still have trouble with that tendon from time to time. For example, I now mouse primarily with my left hand to avoid flaring that tendon.

This year I've continued to deal with fatigue and also still had trouble sleeping, two problems that don't seem to go together but apparently do. I became anemic again and dealt with nasty bruises and hair falling out. I suffered from fevers, common colds (that seemed not so common to my poor immune system), and one mysterious illness the doctors couldn't quite figure out despite many unpleasant tests. And, as probably anyone with a chronic illness can tell you, this year I spent way more than my fair share of time fighting with the pharmacy and battling with insurance, over and over again, to try to reduce the massive amounts of money we spend on medication for my condition.  However, on the good side of health things, after battling for over a year I finally achieved a normal blood pressure!

A lot of other good things happened this year too!! I started pilates and stuck with it - once or twice a week - for the entire year (though I have to admit I haven't been back since the honeymoon. Next week, I swear!) We did our first first Arthritis Walk in December, and raised more than $4,000 for arthritis research with the help of more than 70 friends and family members. I finally graduated from law and graduate school and earned my JD and MS (a task that seemed nearly impossible when I was first diagnosed with RA). We celebrated APL's 30th birthday and, despite being wrapped up in wedding planning, did another Arthritis Walk in May.

As per usual, I also did my fair share of traveling - something I am delighted I haven't let my RA stop me from doing! We visited my sister and her boyfriend in Seattle and I visited my cousin and her family in Ohio. I traveled to Groveland several times for wedding planning and also spent some time in Los Angeles with my family. In April I went back to Los Angeles again for my bridal shower, and then to Seattle again for my bachelorette weekend. And in May we went back to Groveland for the wedding and then went to Spain on our honeymoon (posts about this soon, I promise!)

So what have I learned in the three years since I was first diagnosed with RA? The first year was obviously the hardest, but the second year wasn't a whole lot easier and had major ups and downs as well. Slowing my life down to the pace necessary to live comfortably with my RA has been a difficult process for me. Though I know I have made enormous progress, it is still something that I have to work on every single day. 

I know everyone would still like to hear me say that I am feeling a lot better three years later - but unfortunately RA just doesn't work like that. For the most part, I often feel physically the same as I did in the first two years of my illness - fatigued and seriously achy.

However, despite these same physical feelings of pain and exhaustion, I can confidently say that today my life with RA is a lot better than it was three years ago. This is because I have had time to learn about my RA and adjust my life to suit it. And I don't just mean learning about RA in general, I mean learning about my RA - the quirks of my joints, the little signals my body gives me before a crash, what works for pain and what isn't worth bothering with, how to relax and slow down when I need to, which advice to follow and which advice to ignore, etc. 

Physically, I often feel the same, but mentally I know I have come a long, long way since that day I got diagnosed three years ago. And that's pretty darn great. So, once again...From This Point. Forward!!

Feverish

I think I have a low grade fever - I've been both freezing and overheating all afternoon and all evening. I don't think I feel quite as horrible as the cartoon fish pictured here, but I'm worried that I might be headed in that direction.

The situation really doesn't thrill me - especially considering all the work work and honeymoon packing and wedding project finishing I have to do before I leave next week to drive to California for my wedding.

So, despite the fact that my achy joints clearly need some help as well, I've cancelled pilates for tomorrow so that I can try to get some extra sleep and I've emailed the office to let them know I won't be coming in.

I know exactly how important it is right now to slow down.

Still sucks though.

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!

Februcrazy!

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!!

Pilates

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.