Wednesday, March 28, 2012

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.

Thursday, March 22, 2012

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.

Friday, March 9, 2012

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.

Thursday, March 8, 2012

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.


The Arthritis Foundation has just announced some great news: U.S. Representative David McKinley, a Republican from West Virginia, has agreed to introduce some legislation that could be very useful to those of us with RA (or other autoimmune diseases): the Patient Access to Critical Therapies Act (PACTA).

We all know that the best medications for RA (and other autoimmune diseases) - the ones that really work - also tend to be the ones that are the most expensive. Their high cost, and the fact that health insurance companies don't want to cover this high cost, can leave those of us who need them paying hundreds of dollars out of pocket per month to get the treatments that enable us to function and not be disabled. Remember that time APL paid $750 to pick up my Enbrel prescription?

Traditionally, health insurance plans have charged fixed co-pays for different tiers of medications. Tier I is generic medications. Tier II is name brand medications. And Tier III is off formulary medications. The higher the tier of the drug you need, the higher your co-pay will be. But at least those co-pays have a maximum. Unfortunately, some health insurance companies have started moving vital medications (mostly biologic medications, like Enbrel) into "specialty tiers." What's so "special" about these tiers? For drugs that fall into these categories, health insurance companies have started charging large co-insurance fees or utilizing high patient cost-sharing methods. This leaves us with no choice but to pay hundreds or even thousands of dollars a month for our treatments - or go with less effective treatments and literally suffer the consequences.

The PACTA legislation will require health insurance companies to impose the same co-pay obligations for "specialty" drugs (i.e. biologics) as they do for Tier III medications. This will make it significantly less expensive for all of us to get access to the drugs we need to get back to living our lives!!

It is super exciting that Representative McKinley has agreed to be the lead sponsor for this legislation - but we still need to get other Members of Congress on board so the legislation will pass. You can click here to send a pre-written letter to your U.S. Representative to ask them to be a co-sponsor of this legislation. If you have a story about dealing with high cost medication, you should share it with your representative!!! It makes a difference!!

Tuesday, March 6, 2012

Hip, Hip.....Not Hooray.

This morning I literally woke up crying over the pain in my hip and how little sleep I got last night because of it. I then proceeded to have a mild panic attack that PT wasn't going to be enough (or fast enough) to control this increasing pain - especially since I'm set to leave for a week in California on Saturday. So I dragged myself out of bed to email my rheumatologist again and see if there are any other options. 

Luckily, my rheumatologist is truly amazing and managed to squeeze me in for an appointment this very afternoon. I am so, so, so lucky to have such an awesome doctor - he always manages to make time for me when I start to feel desperate. I count my blessings every time.

After a physical exam and talking to me about the location of my hip pain, my rheumatologist determined that we're not actually dealing with bursitis, as he thought before examining me. He now thinks that it is either (a) muscle strain in my groin (though we couldn't identify an event or action that would have caused such a strain) or (b) inflammation in my actual hip joint. Awesome. 

Since it is not bursitis, the good news is that no one is going to stick a needle into my hip. But, the bad news is also that no one is going to stick a needle into my hip, and due to the restrictions of my pregnancy there really aren't that many options for dealing with this pain and inflammation. For the time being I'm sticking with tylenol and lidoderm patches - and resting and icing...and hoping. If I'm lucky, this will be enough to encourage the pain to die down, at least a little bit. 

If it doesn't, I've been given a prescription for three days of prednisone (and we all know how I feel about prednisone), but I guess I'm happy to at least have the option if things get really bad while I'm in California. After that, if I get extremely desperate, I will have the option of vicodin - which is a drug that falls into Pregnancy Category B (meaning that animal studies have failed to demonstrate a risk to the baby, but there are no adequate studies in pregnant women). If the pain continues to increase in severity or continues to persist, X-rays are obviously out of the question but apparently we can consider an MRI.

It's good to know the options, but I must admit that none of them are particularly appealing. And I'm feeling pretty grumpy about living in this body today - where if it isn't one thing it always seems to be another. 

But, here's to hoping I can somehow convince this pain to magically die down so that I can avoid having to take any extra drugs. And/or that I can at least figure out a way to sleep better tonight....

California Coast Classic

I am extremely excited to announce that APL has decided to ride in the California Coast Classic this year - a 525 mile bike ride from San Francisco to Los Angeles in support of the Arthritis Foundation!!

Even though it was about 40 degrees and extremely windy in Boulder this weekend, most of the ice and snow was off the roads (and bike paths) so APL got on his bike for his first training ride!! I am super proud of him.

You can learn more about the ride at APL's Fundraising Website. There's even a photo gallery of our life with RA and another photo gallery for the baby (which we will continue to update!) In the meantime, I wanted to let APL tell you, in his own words, why he decided to ride:
Every since my wife, Mariah, was diagnosed with rheumatoid arthritis (RA) in June 2008, I’ve struggled to find ways to help. When she is in pain, I try my best to be supportive. I open jars and carry heavy things. I offer to run her a bath and I try to make her laugh. I go with her to endless doctor’s appointments and give her weekly injections. But it never feels like enough.
Getting involved with the Arthritis Foundation has been a really great way to make a bigger difference. Team Z has now participated in three Arthritis Walks and raised over $5,000 for arthritis research over the past two years. Mariah and I also volunteer at events for kids with juvenile arthritis (JA) and work on advocacy and awareness issues. But I still want to make a bigger impact – which was why I was so excited to learn about the California Coast Classic.
When Mariah first got diagnosed with RA, our lives changed in many unexpected ways. We used to be very active people – hiking and biking, skiing and snowboarding – and I always thought that we would be able to do everything together. But almost overnight Mariah’s ability to participate in these activities was dramatically reduced, and more than three years later I still feel like I’m grieving for my missing athletic partner. But even if I can’t ride with her, I can still ride for her.
I will be riding from San Francisco to Los Angeles – 525 miles over 8 days – not only for Mariah but also for our son, who will be born this June. RA has had a huge impact on our path to parenthood. Most RA medications are not safe for use during pregnancy and can take months to leave the body, so Mariah had to deal with untreated RA for many months before it was safe for us to try to conceive. Though her pregnancy has brought some welcome remission, it is highly likely that her RA will return in full force after the birth. And, since we would like to breastfeed our son, she won’t be able to re-start her RA medications. So, in addition to the difficulties faced by most new parents, we’ll also be dealing with Mariah’s untreated RA. And it has been really hard for me to watch Mariah sacrifice so much of herself to realize our dream of starting a family.
That is why the California Coast Classic is so important to me. Arthritis affects the future of my family in so many ways. Not only does my wife battle her RA every single day, but osteoarthritis (OA) is also something that we will all eventually face in one form or another. By supporting the Arthritis Foundation I’m hoping to make a better life for my wife, my son, and those who come after him.  
I hope to get as many of our friends and family involved in this event as possible. While I would love to have you all ride with me, I realize that the ride itself is a major commitment and won’t be possible for everyone. But if you can’t join me on your bike, I would really love for you to help by making a donation – no matter how small. I’ll take all your love and support with me down the California coast and bring it to Mariah and our little boy when I cross the finish line.

Monday, March 5, 2012


The good news: after more than a few weeks of physical therapy, my back is finally feeling ok again - even though my belly seems to be growing by the day!  Whatever was going on with my muscles and SI joint seems to have calmed down significantly. I feel like the PT has also helped me strengthen the area, so I feel better supported. And, when the pain does hit (like sometimes after a long day on my feet) I have come up with several coping strategies for dealing with it: epsom salt baths, stretching, lidoderm patches, gentle massage from APL. So this is good news.

The bad news: now my hip hurts. A lot! It has been hurting seriously and consistently for at least 3 days now. Unfortunately, there is literally no position I can get in where it doesn't hurt. It just hurts. So. Very. Much. And constantly. It's really been taking a toll on my sleeping the past few nights. And it doesn't feel like muscle pain - it feels like grinding, stabbing pain right in the joint. All too familiar joint pain, in fact...

Rar. What on earth is it with this body of mine? If it's not one thing, it always seems to be another!!!

So I emailed my rheumatologist this morning. He thinks the hip pain is more likely to be related to bursitis, rather than hip arthritis. I didn't know what bursitis was, so I had to look it up. 

Turns out bursitis is inflammation of fluid-filled cavities near joints where tendons or muscles pass over bony projections. It commonly occurs in the shoulder, knee, elbow, and - of course - the hip. It can be caused by chronic overuse, trauma, infection, or it can be caused by rheumatoid arthritis. So it isn't RA, but RA can cause it? Awesome. 

RA, you never cease to amaze me.

So, though I just finished up with PT for my back, it looks like I'll be heading back to physical therapy for my hip. (Assuming, of course, I can get an appointment in the not too distant future.) And what if PT doesn't help? Looks like steroid injection is back on the table again. 

In the meantime, I would kill to be able to take a NSAID right now. Or maybe some vicodin.