11.25.2013

Let the Arthritis Foundation help with homework

When I first found out I had end stage osteoarthritis in both hips, I was told I had two options: live with the pain, or have total hip replacement (THR) surgery. But if I had THR surgery, because of my young age, I would eventually need a revision.

I spent countless hours doing research, and discovered I had another option; something called hip resurfacing. Instead of cutting off the top of your femur and installing metal, ceramic, or plastic parts, doctors reshape the femoral head and cap it with a metal prosthesis. The socket is also reshaped, and fitted with a metal cup, which your bone grows into. For younger patients, it allows them to continue to be active; to run, to jump and to play with your kids. This was very important to me.

But after jumping down the rabbit hole that is researching medical devices, I discovered that sorting fact from fiction can be a troublesome task. How as a patient are you supposed to wade through it all? One doctor says, “Use only this kind of device.” Another says, “that device could hazardous to your health.” It’s very frustrating.

This is not a unique situation. I am sure there are many of you who've faced similar conundrums. This is why the work that the Arthritis Foundation does is so important. They are a tremendous resource of practical, unbiased information for people who have just been diagnosed with arthritis and those who’ve been living with it for years.
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Rob Piercy
2013 Jingle Bell Run/Walk Grand Marshal
Anchor, KING 5/NWCN

11.13.2013

A Note From Michelle, Your Honoree "I've found another way to help"

My name is Michelle and I am one of your honoree’s for this year’s Jingle Bell Walk and Run that is taking place at Westlake Center on December 8th. I have been living with a lesser known type of Arthritis called, Mixed Connective Tissue Disease for the last 10 years.

 I’ve often wondered how researchers study a disease like arthritis, but honestly, I’m often so consumed with managing my own care that thinking about it is as far as I have gotten. That was until last week. I had the opportunity to meet Kay and Denna from Plasma Lab International at our Jingle Bell Run and Walk Kick-Off Breakfast and they invited me up to tour the facility and learn more about what they do there. Plasma Lab specializes in collecting plasma from clients that have allergies and very specific auto immune diseases, like Rheumatoid Arthritis, Lupus and Scleroderma.

The plasma goes to many different countries for research that will hopefully one day soon find that breakthrough that so many of us are desperately hoping for. I’ve always had the misconception that people who donate plasma are down on their luck and in the need of a couple bucks. Plasma Lab changed my mistaken belief. The facilities are very nice and the staff is kind and compassionate. First, they screen your blood to make sure you have the very specific antibodies they need. If so, they schedule you for an appointment and the entire process takes no more than one hour and fifteen minutes. Your red blood cells are put back into your body so the process isn’t as hard on the body as giving blood. You get to crash out on a couch and have snacks afterward. I was so impressed that I had the lab take a sample to see if I could donate plasma too.

For me, it’s a good feeling to know that I could have another way besides fundraising and advocating that could aid in finding a cure.

9.27.2013

A note from Rob Piercy, Grand Marshal of the 2013 Jingle Bell Run/Walk


When I tell people I have artificial hips, the most frequent reply I hear is, “But you’re too young for that!”

I only wish that were true.

The fact of the matter is; I’ve lived with osteoarthritis and the conditions that precipitated it for most of my life. As early as third grade, I remember having pain in my hips. When I got into high school and became very active in football, track, and weight training, the pain only increased. By the time I was a junior, the stabbing sensation I felt in the hip joints had gotten so bad, I went to see a specialist.

Four doctors, three x-rays sessions, two MRI’s and a bone scan later, I still didn’t have any solid answers. The best guess of the last orthopedic doctor I saw, was that I had slight hip dysplasia that was causing swelling and pain. “Take some Advil,” he told me.

So for the next 20 years, pain became a part of my daily life. If I was really active one day, I’d be really sore the next. Year by year, my hips became less and less mobile. Still, at age 35, I decided to take up jogging as a way to keep fit. It would hurt afterward, but I loved the runners high from pushing myself. I started training for half marathons and completed three of them.

In time, the pain became different. I was experiencing constant dull aching; the kind of pain that would keep me up half the night. I decided it was time to go back to the doctor.

It only took one x-ray to get a diagnosis this time. The doctor told it to me bluntly. “You have end stage osteoarthritis.”

In that moment, I knew my life would never be the same again.

It’s why the work of the Arthritis Foundation is so important to me. I’m incredibly honored to serve as Grand Marshal of the 2013 Jingle Bell Run/Walk and hope you’ll consider forming your own team or joining mine.

9.25.2013

Meet Your 2013 Adult Honoree for the Seattle Jingle Bell Run and Walk

Hi! My name is Michelle and I am very proud and honored to be the adult honoree for this year’s Jingle Bell Run and Walk. I wanted to take some time to tell you my story with auto immune diseases.

I had always been extremely active. I loved running, snowboarding, hiking—any excuse to be outside, really. Very slowly I began to notice that my hands and feet would go numb and turned white when I was stressed or especially when I was cold. I just ignored it because I had never been sick before. Both my mom and grandmother have auto-immune diseases, but it never occurred to me that I would get one too. Then I noticed that I was not recovering from workouts; I was so sore and tired. I thought maybe I was working out too hard. After a month of being so tired I could barely get out of bed I thought it was time to see a doctor. She did blood tests and they could find nothing. I went home and tried to ignore it. After a while longer, I noticed that my joints were swelling and my muscles were very tender and I went back to the doctor again. This time she sent me to a Rheumatologist. After some tests, it was discovered that I had Mixed Connective Tissue Disorder. (MCTD) This is commonly referred to as an overlap disease because symptoms from other diseases such as Lupus, Scleroderma and Polymyositis.

I started down the path of trying to find the right combination of medications that would make me feel ‘normal’—the new ‘normal’ I should say. And my symptoms got a lot worse before they got better. I was so sick from the medications that I couldn’t keep food down. At one point I needed help doing the things we all take for granted. Things like tying my own shoes and zipping my coat. This was an extremely humbling experience. I was once fiercely independent and now I needed help doing stuff like that? It was really hard for me to accept, my new life. Because of the changes my body was (Is) going through I became pretty depressed. I couldn’t garden, go out with my friends, and work on my house. It was difficult for me to say the least.

A few years after I received my MCTD diagnosis, I started having problems breathing. That is when I found out that 80% of those of us with MCTD develop lung issues. The lung walls thicken making Pulmonary Hypertension a huge concern. I was so scared. I just didn’t understand how this could all happen to a healthy person. I felt as though my life now was being spent in a doctor’s office or having lab tests. I am lucky to have insurance because the cost would be astronomical.

Last year I was tired. I was tired of not being able to do the things that I wanted to do. I understood that I would most likely ever be the same, but I still wanted to go do things—watch the Seahawks, cheer my husband on at his events and go on a vacation without being exhausted. I needed to make some major changes—the first one was just getting off my butt and start being active again. I found a couple of workout partners and got back in the gym, very slowly at first. Just a slow walk was good enough! Now I am in the gym 4-5 days a week and just this week I started a conditioning class to start working on my balance and keeping my muscles from deteriorating any more. From research I knew that gluten could pose issues for me too. In the past I had allergy testing and knew that I had sensitivity to wheat. I didn’t want to accept it at the time, but I know my body well enough that if I am sensitive to it, whatever it needs to go. I thought that getting rid of wheat products would be pretty hard, but with the decrease of joint swelling that has occurred, I am sold. I even had to take my wedding ring down an entire size. I found a massage person that understands auto immune and now have a massage once a month. And I finally have cocktail of medications that are working and don’t make me sick or broken out in hives all the time.

It’s been a struggle, but for the first time in over 11 years I feel ‘normal’. My new ‘normal’. And it feels pretty darn good.

7.31.2013

Kids get Arthritis too!


As a parent of a child with Juvenile Arthritis (JA), I know all to well that it is not a small problem. The joint pain, lethargy, change in attitude, and all the negative side effects that come with the disease are very often overlooked and misrepresented or unnoticed by parents and the media. When my daughter Maggie was diagnosed at 18 months old, I was shocked to learn the number of children affected by this disease nationwide. Why had I never heard about this issue if so many are affected by it?

Luckily the Arthritis Foundation has been working for years to foster community for those suffering from this ailment. They continuously contribute to a growing awareness of JA through programs and resources, as well as educate about all of its forms and symptoms, how it can affect a family, and ways to improve quality of life for those affected.

If you don’t already know, please inform yourself by going to the Arthritis Foundation brand new site focused on JA:

Also, you can help fight JA by donating or registering for the Jingle Bell Run/Walk!

6.14.2013

From our friends at All Flared Up




Ten Things You May Not Know About My Experience With RA

1. When I was newly diagnosed, I ‘quit’ my first rheumy in a blaze of glory. He made me cry and his admin was giving me a hard time about releasing my records. I had a moment and called her a name I’m too ashamed to type here.

2. I have permanent erosions on the ball of my left foot. It only bothers me when I stand for a long time in bad shoes.

3. Before I was officially diagnosed, my feet hurt so bad that I really did wear tennis shoes with a business suit. More than once.

4. I have tried every detox diet for arthritis out there including the one where it has you chug saltwater to make you…um…use the bathroom. Which, FYI, doesn’t work. Chugging that saltwater and having NOTHING happen sucks. Waking up the next day 7 lbs heavier due to water retention…also sucks.

5. I can give myself shots, get regular bloodwork, and have had infusions and aspirations. They don’t bother me. But I’m terrified of tetanus shots, TB tests, and the dentist.

6. I didn’t really tell anyone I had RA for the first two years I had it. I’m still very protective over who gets to know the details.

7. The majority of my friends have no idea that this blog exists. Even still, I make a point not to mention specific or identifiable stories.

8. I’ve only ever let one person see me give myself a shot. It just feels too personal for some reason. I’d actually be more comfortable walking around naked.

9. I had weird hormonal things happen in the months before I started having symptoms. Pre menstrual depression so severe that if I thought you had looked at me wrong, I’d burst into tears. Even today, if I start or switch birth control pills, I have strange aches and pains for the first month or two.

10. The first two places I experienced inflammation were the arch of my left foot and my left pointer finger. In both cases, I literally woke up one morning and it felt like I’d been stung by a bee.
And there you go! Do we share any of these? I’d love to hear.

6.03.2013

Arthritis Awareness Month 2013: Faces of Arthritis

There are numerous misconceptions about the disease arthritis. Some think its a condition affecting only older people. Others are under the impression that its more of a nuisance rather than an often debilitating ailment. For as ubiquitous as the term “arthritis” is, there still exists a tangible knowledge gap regarding its prevalence and the effects that it has on those afflicted.

To address these stereotypes and narrow said knowledge gap, The Arthritis Foundation made the theme of last month's Arthritis Awareness Month “Faces of Arthritis.” The goal of the campaign, as the name suggests, was simple: to educate and raise awareness that arthritis does not discriminate and nobody is immune.

The facts are:
  • Arthritis is the nation’s leading cause of disability; a more frequent cause of activity limitations than heart disease, cancer or diabetes.
  • One in every five American adults has doctor-diagnosed arthritis.
  • Kids get arthritis, too with over 300,000 living with the disease.
  • Arthritis costs $128 billion annually in medical care and other costs.
  • There are over 100 types of arthritis.
  • Arthritis destroys joints, bones and other connective tissues.
  • Arthritis robs people of their quality of life.
  • Two-thirds of people with arthritis are under the age of 65

However, to many in the modern fast-paced, data-driven, instant gratification-based world, these statistics simply do not make the impact they should. We need visuals. We need names and faces. Faces such as Margo Deihl, Seamus Mullen, Taylor Lucas, Tabitha Armstrong, Ryland Bristlow, Jennifer Ray, Cole Donelan, Eric Hill, and Abbigale and Jeffrey Wright.

Great strides were made by arthritis advocates last month. In fact, over 1,350 letters were sent to 330 legislators stressing the value of arthritis research funding and the importance of access to pediatric rheumatologists. As a result, several Representatives submitted formal requests for support of the Center for Disease Control and Prevention’s Arthritis Program and letters were submitted to the Appropriations Committee in support of the Pediatric Subspecialty Loan Repayment Program.

The “Faces of Arthritis” campaign was an important milestone in the fight against arthritis, but it was a milestone on a still very long road ahead. We need to maintain the momentum of last month, continue to support research funding, continue to build awareness and not lose sight of the long term goal even as we acknowledge the critical small steps.

Please visit The Arthritis Foundation's Advocacy Page to learn how you too can be a part of this momentum.