Talk To The Other Guy

Over the past few weeks, I've really been getting the feeling that the remission I experienced in my second trimester just isn't going to last through my third. I feel like the pain in my hips and hands is only getting worse, and I'm just feeling so stiff and sore and fatigued all of the time. I know that at least some of this discomfort must be due to the pregnancy itself, but the ache is just so familiar that I can't help but feel like my RA is making a comeback.

Since I still have a few weeks of pregnancy to survive and I feel like things are only getting worse, I figured it was time to talk to my doctors. So I shared my concerns with my OB and with my rheumatologist, and I asked them both what my options are.

Unfortunately, neither was a particularly useful conversation. Both vaguely mentioned the possibility of prednisone, but I expressed my general dislike of that option and asked if there were any others. And, in response, both basically said this: talk to the other guy.

Awesome. That's right! My OB said to ask my rheumatologist. My rheumatologist said to ask my OB.

So.....exactly what is it that I'm supposed to do now?

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.

2012 Arthritis Advocacy Summit

In case you didn't know, the 2012 Arthritis Advocacy Summit is happening right now in Washington D.C!!

Honestly? I'm a little bit bummed that I'm not there myself. I was offered a stipend from the Denver Chapter of the Arthritis Foundation to attend the Summit, but seeing as I'm in the eighth month of my pregnancy (eighth?!?! How on earth did that happen?!?!) and some of my RA symptoms have returned, traveling is pretty much out of the question right now. Which is a bummer.

Luckily, there are some ways to check in online to see what is going on with the conference. The Arthritis Foundation has a Livestream of some of the events. I watched a few speeches this morning - and when I checked in just now they were showing a JA slideshow set to Katy Perry's "Firework" (which really made me smile because it was a lot like the one I made for JA Camp last year!!)

There are even some things you can do to contribute to the efforts remotely. So far, the Arthritis Foundation has posted three actions you can easily take from home:

Action #1: The heavy toll arthritis takes is unacceptable and those suffering deserve access to care. Write a letter to your Members of Congress urging them to End Discrimination Against Specialty Tier Medications. Click here to take action!!

Action #2: Write a letter to your Members of Congress urging them to Increase Access to Pediatric Rheumatologists. Click here to take action!!

Action #3: Research holds the key to preventing, controlling and curing arthritis, the nation's leading cause of disability. Send a letter to your Members of Congress requesting their support to Fund Arthritis Research at the Department of the Defense. Click here to take action!!

It's best if you make these letters personal by including your own story, but even if you don't have time to do that you can still help the advocacy efforts by sending the form letter in just a few clicks. And, if you "like" the Arthritis Foundation Facebook page, additional action alerts will show up in your Facebook newsfeed during the Summit.

Next year, I'm really hoping to be able to attend the Summit in person - I'd love it even more if APL and the baby could be there with me. But, since I'm stuck at home for the time being, I'm really glad there are still ways that I can easily contribute. And so can you!!

Morning Stiffness

For the past three(ish) weeks, I've been waking up every single morning feeling like I have absolutely been run over by a truck. Multiple times. Or maybe like my body is filled with rocks. Or possibly both. It's a very frustrating way to start the day.

I'm sure the extra weight and my big belly and the tiny person taking over my insides all play a role in this soreness. Pregnancy, as I have discovered, takes more of a toll on your body than I ever expected.

But, try as I might, I just can't help thinking about how eerily familiar all morning stiffness feels, especially combined with the last few weeks of hip and hand pain. I can't help thinking about days before my diagnosis, when I could barely drag myself out of bed and I had no idea why. Or about all those days after my diagnosis, when I could barely drag myself out of bed and it didn't make it any easier to know why.

I'm really trying not think about the fact that it seems very much like my RA is on its way back - and may already be here. But, honestly, that is so much easier said than done. Especially in the morning when I wake up feeling totally beat up instead of at all rested. When I wonder how on earth I will get through the day and the tiniest tasks - like deciding what to make for dinner - seem almost impossible.

I'm also trying to ignore my worries about how I will ever care for a small human if I feel anything like this after he arrives, but that is also easier said than done.

I'm certain that I will get through all this - and I am so grateful to have APL always by my side to help me when I need it. And I'm positive this will all be worth it in the end. It's just that....some days everything seems a whole lot harder than it ought to be.

Shelly Baer

This morning I read a very inspirational article about Shelly Baer, who was diagnosed with juvenile rheumatoid arthritis at age 3. Unfortunately, her arthritis was extremely aggressive, and she eventually ended up with physical deformities and several joint replacements.

The article explains Shelly's difficult transformation from child to teen to adult - while she attempted to come to terms with what the arthritis did to her body. She eventually learned to see her own beauty and transformed her disability into a platform for helping others and changing how we view disability. It's a really amazing story.

But, better than letting the article explain it to you, let Shelly explain it to you herself - in her amazing TED Talk in Miami:

How Many Weeks Did You Say Were Left?

TMI Warning: This post contains some details about pregnancy that you may consider to be too much information. I'm going to use some female anatomy words and everything!! Don't say I didn't warn you!

When I first found out that I was pregnant, 40 weeks seemed like an eternity. And there were some days before I hit week 13 (when my morning sickness finally died down) that I literally thought I would never survive this ordeal.

But now I've reached a point in my pregnancy where the weeks remaining number in the single digits. It turns out this baby thing is actually happening - and soon!! These days he kicks me vigorously enough that sometimes I expect that scene from Alien (or Spaceballs, preferably).  They even gave me my hospital admission forms at my last prenatal appointment. It's really hard to believe.

There's good news and there's bad news about how I have been feeling lately.

The bad news is that my hands have not improved at all since they started hurting almost two weeks ago. In fact, I honestly think they may be getting worse. I have a couple of finger joints that are consistently visibly swollen, and it's getting increasingly difficult to get things done with my hands without a lot of pain. To make matters worse, my hips have really started acting up as well. And all the stretching, resting, soaking, and Tylenol in the world doesn't really seem to do anything to help either of these problems.

It actually isn't clear whether all this joint pain is RA-related or pregnancy-related (or both?) I mean, throughout this pregnancy I have discovered that just being pregnant does extremely weird things to your body. And, for example, another pregnant friend tells me she's having swelling in her hands too (though no pain). It also seems to make sense that my hips would hurt since the baby is growing so fast - and, consequently, so is my belly and the amount of weight my hips are being forced to support. (In fact, the OB told me on Thursday that he will grow half a pound per week from now on!!! What?!?!?). 

But... I also have to admit that all this joint pain and soreness and stiffness is eerily familiar. If I could forget for a minute that I am pregnant I wouldn't hesitate to call this an RA flare. Sometimes it makes me wonder whether my "remission" is actually going to last through these last few weeks - maybe it's already over - and that thought can make even the few weeks remaining feel like an eternity. And, of course, the way I have been feeling lately makes me feel a little anxious about the potential severity of the inevitable post-birth flare. I mean, if I'm this achy while I'm still pregnant, what will happen when I don't have the "benefit" of pregnancy and I still haven't re-started my RA meds?

It can get a little overwhelming to think about, so I am honestly trying not to. If I'm going to have a bad RA flare now - or after the birth for that matter - there's literally nothing I can do to stop it, so there's no sense getting upset about it. I'm just trying to take it easy, go slow, and focus on the good things that are happening.

And there is good news too!! At our last prenatal appointment we discovered that, with the crazy growth spurt our little one has recently gone through, my placenta has moved far enough away from my cervix that there is no more risk of placenta previa! And this is great news! While it doesn't completely rule out the possibility of needing a C-section, it does really reduce the likelihood. And it also means that we won't have to rush the baby and bring him out early at 37 weeks - now he can take his sweet time and come out when he feels good and ready. And that makes me really happy.

So, while I wait out these last few weeks, I'll just do what I can to reduce my pain and/or distract myself. I'm planning to focus on taking care of myself - I even booked myself a prenatal massage for tomorrow - because I know that I won't have that luxury for very much longer!!

An Unpleasant Surprise

This morning I woke up to a very familiar, yet very surprising, sensation: pain and stiffness in my hands. (So, needless to say, this will be a pretty short post).

Today my finger joints are all stiff - and some of them are visibly swollen. My hands ache whenever I use them, which, of course, is all the time in order to do anything at all. It's a totally familiar feeling, because hand pain has been one of my biggest battles since before I was even diagnosed with RA. I have an arsenal of gloves and braces and soaks and heat packs to try to help me manage hand pain. I'm no stranger to achy hands.

But this morning the hand pain surprised me for two reasons. First, I can't think of anything I might have done yesterday to cause sudden and massive pain in my hands - and usually hand pain of this magnitude follows some kind of overuse. Yesterday morning I did a glucose tolerance test, where you have to drink this nasty sugar syrup and then get your blood drawn to see if you have developed gestational diabetes. The test went fine, but the massive dose of sugar gave me a headache that left me in bed reading a book for the majority of the afternoon. Can this hand pain be from...holding a book? That seems lame.

The second reason the hand pain surprised me is that my joints have been (mercifully) well behaved and quiet through the first two trimesters of my pregnancy (with the exception of that one stupid hip). I've hardly had any trouble with any of my joints in the past few weeks (even the hip hasn't been that bad). But this hand pain feels like the same old RA pain come back again. 

Where did it come from? And is it an indication that my remission isn't going to last through the third trimester? I really hope not.

A Rap About Rheumatoid Arthritis?

Yeah, you read that right. It turns out D.O.P.E. Music has a song/rap called "Strong" that is about living with rheumatoid arthritis. You can hear the song here. Here are a few of the lyrics:

Wakin' up feeling doomed
Thinking to myself I don't have enough spoons

People in my family don't believe my joints are damaged
You know I can't stand it how they take their life for granted

Sometimes I feel it's torture but still I gotta fight it
Can't let my life be controlled by arthritis 

To be honest, I'm not exactly positive how this song made me feel. The message is mostly positive - about being strong enough to overcome all the negative aspects of RA - but something about the music and mood made me feel a little bit sad. 

In any event, I do think music is a really interesting avenue towards awareness that I never thought about before.

Editorial From Arthritis Foundation President and CEO

Arthritis Foundation President and CEO, Dr. John Klippel, has written an really interesting editorial about the high cost of prescription drugs as a barrier to arthritis treatment (you can download the PDF of the full editorial here).

A rheumatologist himself, he says he can remember the days where patients had to give up on their dreams, relationships, and careers in order to cope with failed medications, hospitalizations, and joint replacements because disease-modifying medications just weren't enough to control their RA.

With the advent of biologic drugs, difficult-to-treat cases have become possible-to-treat. When a new class of medications brings significantly improved outcomes, and reduces the likelihood of future pain, surgeries, wheelchairs, and early death, it's a game changer.

But the point of the editorial is not how awesome biologics are - the point is that too many patients are being forced to live in the past because their tiered high-copayment or coinsurance prescription plans leave these life changing medications out of the reach of their budgets.

Biologic medicines are expensive because they are produced with living cells - rather than from synthetic chemicals in a laboratory. Annual costs for these medications can exceed $20,000 per patient - and this for a single medication (and many of us know that it often takes more than one prescription to completely control our disease).

While the Arthritis Foundation and most rheumatologists recommend early diagnosis and aggressive treatment of RA - to prevent long-term joint destruction - high out-of-pocket expenses may delay newly diagnosed patients from starting on biologics, or prevent them entirely. This can lead to lifelong disability.

So, as I said before, if you care about this issue should consider writing to your representative to advocate for increased coverage of these life changing medications. 

I am lucky enough to be able to afford my Enbrel (when I'm not pregnant, obviously), but I know that not everyone out there is so lucky. I truly feel for those who suffer from RA but can't afford the medications that could drastically improve the quality of their lives, particularly because I know exactly how much Enbrel has changed my life - I quite honestly don't think I would be having this baby without the help I had from Enbrel in getting my health back on track. I think legislation that would increase access to these medications is really worth supporting.

Possible Placenta Previa

TMI Warning: This post contains details about pregnancy that you may consider to be too much information. I'm going to use lots of female anatomy words and everything!! Don't say I didn't warn you!

We had another ultrasound yesterday - where we got to take a peek at our growing little boy. Check out his profile and his little button nose!!

The point of the ultrasound, however, wasn't really to look at our baby (though we were delighted to see him again!). The point was to look at the position of my placenta. Four weeks ago, when we found out we were having a boy, we also discovered that my placenta had implanted too low in my uterus - partially covering my cervix. If the placenta ends up covering (or partially covering) the cervix, that's a complication called placenta previa (or partial placenta previa).

Four weeks ago, the OB told us not to worry, there was still plenty of time for the placenta to "migrate" out of the way. That's why I got checked again yesterday - to see if the placenta had moved at all. Unfortunately, it doesn't seem to have moved much yet. It didn't get worse (which is good), but it also didn't get better (which is less good.) I'm not due until mid-June, so there's still potentially time for the placenta to get out of the way. I'll be checked again in another four weeks to see if there has been any progress. 

In the meantime, I've been put on "pelvic rest" (which is pretty much what it sounds like - no sex, no orgasm) and advised not to do any "vigorous activities" like jogging (which I almost laughed in the OB's face about. I couldn't jog before I got pregnant!!). These precautions are to avoid any potential bleeding right now, because if I do start bleeding I may end up needing to be hospitalized.

If my placenta doesn't move out of the way, I'll end up needing a c-section. With complete previa, the placenta physically blocks the baby's way out, so vaginal birth simply isn't possible. And, even if it isn't completely covering the birth canal, if the placenta is too close to the cervix it can cause profuse, life-threatening bleeding, so a c-section is still the safest way to go.

When the c-section occurs depends on how the baby and I are doing - and whether there is any bleeding. If we both do ok, the c-section will be around 37 weeks (happy anniversary to us??) This is still an early delivery, but the point is to do it before there is any chance of natural labor, which could cause the life-threatening bleeding. If I have bleeding when I am less than 34 weeks, I might be giving corticosteroids to speed up baby's lung development and prevent other complications - in case he needs to be delivered even more prematurely. Either way, we'll have to weigh the benefit of giving the baby extra time to mature against the risk of waiting and the possibility of heavy bleeding and other complications.

I'm trying to remind myself that this is all a great big "IF" right now. This is only an issue IF my placenta doesn't move out of the way. So far, I haven't had any bleeding whatsoever - which is a good sign. And there is still theoretically plenty of time for my placenta to migrate out of the way. And my doctors are on top of it and I'm being checked for progress every four weeks. 

I must admit that it's still a little bit scary, though.