This Sunday, February 2 is Super Bowl Sunday, as we all know. The Denver Bronco’s (Go Denver!) are taking on the Seattle Seahawks in the main event. There is also a sideshow where billions upon billions of dollars will be spent on food, beer, and advertising despite being “just a game”. With all the hype little attention will be paid to anything else for the next week or so that is not game related. Unfortunately, this includes ignoring the over 1.3 million Americans currently suffering from an incurable disease called Rheumatoid Arthritis.
What you might not know is Sunday is also Rheumatoid Awareness Day. Not enough people know that actually! Now a traditional awareness game plan post would include handing out educational material, asking everyone to include a ribbon at their Super Bowl Party, or make some sort of a plea for a donation (I like the good people at curearthritis.org) in order to help people with a Rheumatic Disease. However, since my individual diagnosis got changed recently (seronegative arthritis with characteristics of RA-basically RA without the traditional blood markers), this post is a lot more personal for me than my “usual awareness” post. Therefore, I’m not going to follow the normal traditional awareness game plan.
What is Rheumatoid Arthritis?
Rheumatoid Arthritis (RA) is an autoimmune disease where the body is actually attacking “self tissue”. It usually begins in the thin tissue membrane that lines our joints. Basically, a patient’s immune system is literally “fighting” itself. This causes fluid to build in the joints, often-creating swelling, inflammation, and significant pain throughout the body of the individual. This horrible disease produces chronic symptoms which means most patients can feel just fine for several days, weeks or even months, and then experience an “flare” with little to no warning what so ever. While some people feel the disease at work continuously, others can experience a much-deserved “remission” for months or even years.
Symptoms and frequency of a Rheumatic Disease (RD) can vary drastically from person to person. Women are 3 times more likely to have a Rheumatic Disease than men. Arthritis research currently points to a combination of environmental and genetic factors that create a probability of Rheumatoid Arthritis symptom onset. However, there are many people in the same environment with the same genetic markers that are not affected at all with symptoms. To put it another way, researchers still don’t know the specific causes behind RA.
There are a number of medications that aid in both the reduction of inflammation and help modify the disease. Disease-Modify Antirheumatic Drugs (DMARDs) are the primary treatment for RA. Plaquenil, which is one of the most common DMARD’s, is what my Rheumatologist added to my medication regimen. Another common DMARD used is Methotrexate. Methotrexate has serious side effects however that can require immediate medical attention.
If DMARD’s are not successful for a patient, a Rheumatologist can prescribe a Biological Agent. Biologics are generally only used if Methotrexate or Plaquenil are not successful for example after a trial period determined by the doctor and patient working together. A popular example of a Biologic Agent is Enbrel, which is what pro golfer Phil Mickelson advertises for.
What most people don’t know or realize is that kids can get arthritis too! In fact, more than 50,000 kids have been diagnosed with Juvenile Rheumatoid Arthritis (JRA) in the U.S. alone. When JRA symptoms first appear in a child, it is common for parents to write it off as a flu bug or believe that a sudden rash might have occurred from an allergic reaction for example. The symptoms might even recede slightly before showing up again. This can cause diagnosis to be delayed for some time. After all, no parent or doctor expects a small child to have arthritis right?
A child’s immune system is not fully formed until about age 18 to 25 depending on whose research you want to use. This means an “autoimmune” form of arthritis is especially dangerous in children. It compromises their ability fight normal diseases leaving them open to complications. JRA is an autoimmune disease that has the body warring with itself in its efforts to recover. While similar to Rheumatoid Arthritis, recent arthritis research shows that JRA stands alone in how it actually attacks and affects a child’s body.
JRA can appear in children as young as 6 months. Joint pain, reddened joints, and swelling that refuses to dissipate are the key symptoms. Doctors are currently finding that the number of joints affected has a parallel connection to the severity of the disease. The number of joints affected also has a connection to the likelihood of achieving total remission.
Pain is an Invisible Illness.
Simply put, having an invisible, chronic illness sucks the big one! Not only does it make my life more difficult, people can’t see my pain so they automatically make a snap judgment about the seriousness of my illness. Questions like are you faking it, is that illness as serious as you say, how could someone so young possibility be in that much pain are common amongst people that don’t get it. In fairness, it is hard to prove to someone that I have had 9 spinal epidurals since September due to pain for example unless I show them the stack of medical bills on my kitchen table. However, that does not excuse ones ignorance for not believing a chronic patient. No chronic patient should ever have to justify his or her pain to anyone.
The question remains though, why due RA or Rheumatoid Disease patients have to constantly justify their lives through the lens of chronic illness? Why does the general public (aka healthy people) not accept chronic illness on the same level they accept acute illness? Why must chronic patients have to suffer through “gender grief” on a daily basis?
As a male, society has taught me that I’m not supposed to show pain. In fact, I would argue society has taught me that being in pain is just apart of being male. However, being an empowered Stanford University Epatient Scholar I know that this is completely and utterly wrong! Society needs to quickly adapt a more fluid definition of gender roles and how it defines the value of a person. Without this change, chronic patients do not have a lot of hope for the future.
A New Diagnosis Means New Opportunities for me!
Every day presents a new challenge for me when fighting pain.
I’ve been incredibly lucky! Not only are my symptoms still moderate despite my 7 surgeries, I found an online patient community that listens when I need it most, but will also push me to earn a better quality of life for myself when I need it. I’ve learned ‘Motion is Lotion’ when dealing with arthritis. I’m skiing again and I even started to run again thanks to the support of this patient community. With some luck, I’m hoping to even start racing for the Arthritis National Research Foundation (curearthritis.org) next summer. I strongly believe that every patient should look into finding other patients for support and inspiration online!
Since my first symptom of arthritis, I’ve earned a second bachelor’s degree in accounting, bought my first house, started working full-time again in government as a tax accountant, and started this website. I’m also a Stanford University MedX Scholar and Honor Role recipient — my biggest accomplishment thus far I believe. I’m bragging because my diagnosis and chronic pain aren’t excuses to give up on my life. In fact, they’re just the opposite. They’re excuses to enjoy life while appreciating and learning from everyone who crosses my path along the way.
The new friendships I’ve formed because of this diagnosis have been amazing. I don’t wish arthritis or chronic pain on anyone, but if you do experience them then take advantage of this opportunity to meet new patients and advocate for others who are less fortunate than you.
Resources and Blogs I like and read.
Curearthritis.org-Great information on various types of arthritis and they have some very cool donation opportunities. Check them out!
www.thehurtblogger.com-Britt is as knowledge as she is inspirational.
www.angeladurazo.com-Angela is a professional Triathlete and actress with Rheumatoid Arthritis.
Chroniccurve.com-Emily is a fellow ePatient scholar and advocate who knows everything about everything I believe.
710.9.tumblr.com-Melissa is also a fellow ePatient scholar and advocate.
Fitaimee.blogspot.com-Aimee is an RA Warrior who keeps on smiling no matter what her pain levels are.
Notstandingstillsdisease.com-Kirsten is a fellow liberal hippie Buddhist how is constantly fighting for awareness.
www.afreshchapter.com-Terri is a cancer survivor changing the world who takes amazing photographs.
www.lifeaccordingtokenzblog.com-Kenz is another autoimmune arthritis sufferer who smiles constantly.