PACTA

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!!

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.

Click here to join or support Team Z

Bursitis

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.

Daily Challenge

Inspired by Nessy at lipstick, perfume, and too many pills, I've decided to join the Daily Challenge. Everyday they will send me a small, health-based challenge to improve my daily life and overall health. And it's not a big thing to commit to doing one small thing to improve your health every day. So let's see how it goes!

Here is today's challenge:

How to do it

What's your favorite healthy go-to drink? A glass of sparkling water with a slice of lemon or lime? A cup of a delicious herbal tea? A cold glass of low-fat or skim milk? Whatever makes you savor your sips, share it!

Why it matters

Staying hydrated is key! Every system in our bodies needs water, and without enough of it, we can feel sluggish or headachey. Unfortunately, it's all too easy to hydrate ourselves with drinks that are high in sugar and calories. By sharing a healthy drink, it may motivate you to think of other good-for-you drinks to guzzle - and you may get some good ideas from others!

Fun Fact

The average person in the United Kingdom will drink about 80,000 cups of tea during his or her lifetime.

For me, especially since I got pregnant, I have been a whole lot more conscious about what I drink and trying to stay hydrated. However, I have to admit that eliminating sugary (and caffeinated) drinks has not been easy for me. In fact, as far as the caffeine category goes, I will admit to not being entirely successful in that department - every once in a while I can't resist sneaking in a Coke or Dr. Pepper, and, since aspartame gives me a major headache, I don't drink the diet ones either (sorry, kid!!).

But, for the most part, I have replaced soda with wonderful Boulder tap water. When I need a little bit of bubbles I've been drinking Pellegrino with a little lemon or lime juice in it. And, to make sure I get the calcium I need (so the kid doesn't steal what he needs from my bones) I've been drinking a lot more non-fat milk - we get ours from a local dairy! It gets delivered to us every Monday in glass bottles and everything, fresh from the cow and delicious!!

And my friend MK shared this awesome idea: "I love tap water with homemade ice cubes that have blue berries or strawberries frozen in them!" Those ice cubes would be nice in my Pellegrino too!!

So that's Day 1 of the Daily Challenge - and so far so good!

Happy Valentine's Day!!

Check out my Valentine's Day guest post on CreakyJoints.org!

Some News For You!

It's a boy!!

Parker

You all know how much I love and admire the kids with JA - their determination to keep loving life despite their arthritis inspires me every day! Today I've been inspired by Parker, who made a video about what it's like to live a week in his life. I want to share it with you:

Physical Therapy

It's snowing just a little bit in Boulder today. The picture is of the snow that has accumulated on the fence in my back patio since last night - I would say it is almost a foot. And it doesn't look like it is planning to slow down any time soon.

So, after looking out the window, I guess I wasn't too surprised to find a voicemail on my phone letting me know that my physical therapy appointment for today had been cancelled. What did actually surprise me was how that message made me feel: slightly disappointed, actually. Which is a really good thing - because it means I actually like this physical therapist and I actually think it's helping.

After my last less than stellar physical therapy experience, I have to admit I was pretty reluctant to waste my time and effort (and money) trying it again. But the pain in my back wasn't getting a lot better, and my belly certainly isn't getting any smaller, and I can't exactly just take a handful of Advil and hope the pain goes away. So last time I saw my OB I bit the bullet and asked her for a recommendation for PT. 

And I am ever so glad I did. She recommended a rehabilitation center associated with a branch of the same hospital where I will give birth - and they actually have PTs who specialize in prenatal therapy. (And postnatal therapy, which may also turn out to be super useful). SCORE. So I've been seeing this new PT for two weeks now. This morning, when I was actually disappointed that my appointment was canceled, I realized that this PT is actually helping. 

This PT has been focusing more on loosening and strengthening the muscles in my back (as opposed to focusing on the actual SI joint itself). Now that I think about it, the physical manipulation she has been doing and the exercises I have been doing really do seem to be helping the pain in my back - especially since I am now showing a whole lot more than when I was seeing the previous PT. Plus she is super nice and willing to answer all of my questions and she is full of good suggestions. For example, on Wednesday she pointed out that the pregnancy is causing me to stand with my pelvis tipped forward, which is putting extra strain on my back. And, when I thought about how I have been "naturally" standing recently I realized she was right (which is probably how I was standing during the three hour visit to Babies 'R Us last weekend, which explains the extra pain I was in this weekend). So of course she showed me how to correct that.

In any event, though I am disappointed not to have her help today (and a little nervous that I will have to until next Wednesday to see her again) I am really glad I had the realization that it this PT is actually helping. That makes me feel good. Because it did take a lot of effort on my part to start over and try again with a new PT. But, as it turns out, with a trustworthy recommendation and someone who actually specializes in my issues, it was totally worth the effort.

Arthritis Patients Who Rely on Medicare

As part of my Arthritis Ambassador assignment this month, I just emailed my Congressional Representative about physician reimbursement payments and therapy cap exceptions for arthritis patients who rely on Medicare. 

I know, I know, I am only 29 years old - nowhere near the Medicare age of 65. And most of the arthritis patients on Medicare are probably dealing with OA anyhow, rather than RA. So why on earth do I care what happens with Medicare? Here's why:

For one thing, arthritis is unacceptable. Period. Any type of arthritis pain seriously affects your quality of life. And I think anyone who suffers from arthritis is entitled to treatment.

For another thing, if long term solutions for these issues are not reached, patients with arthritis who rely on Medicare might have trouble accessing their doctors when they really need care. Or they may have to stop their arthritis therapy treatments because of the prohibitive cost. That just doesn't seem right to me. 

As for me, more personally, RA is a chronic disease - one that I will literally have to deal with for the rest of my life. Someday I may need Medicare myself to get the arthritis treatment that I need. In the meantime, the structure of Medicare could potentially affect my own health insurance policy.

For this reason - for myself, my family, and other suffering from arthritis - I've asked my Representative to:

1. Extend the therapy caps exception process
2. NOT to cut Medicare physician payments
3. And to find long-term solutions to these issues so arthritis patients who rely on Medicare can have access to the health care they need and deserve.

This is an issue that Congress is working on right now - and they are only working on it until the end of February! So, while they are deciding what to do, it would be really great if members of Congress heard from people who really care about arthritis. 

If you want to take action too, you can send a quick email to your Representative by clicking here.