I don’t have a whole lot of time to write – my uncle is getting married this weekend so I’m about to get off the computer for a while – but I want to share with you something special about tomorrow, October 12. Tomorrow is World Arthritis Day, the day where millions of people across the globe work together to raise awareness of the realities of the over 100 kinds of arthritis. When more people are aware of arthritis, governments might pay more attention, research facilities might focus more effort on arthritis medications and on finding a cure, and employers might be more understanding of their employees’ conditions. If you understand what living with arthritis is like, then you might be able to make life easier for someone with arthritis at some point.
I’m going to tell my story, which I tell in honor of World Arthritis Day every year. In July 2010 I was diagnosed with arthritis, but I had been in pain for a long time before that.
– arthritis is the most common cause of disability in the United States
– arthritis and rheumatic conditions cost the US economy $128 billion annually and result in 44 million outpatient visits and 9,367 deaths each year
– there are over 100 forms of arthritis, including Kawasaki disease, Rheumatoid Arthritis, Sweet’s Syndrom, Ankylosing Spondylitis, and more
– nearly 300,000 children in the US live with juvenile arthritis
– 1 in 5 adults living in the US have doctor-diagnosed arthritis
– Half of Americans afflicted with arthritis don’t think anything can be done to help them
How You Can Help1) Wear blue tomorrow, and explain why you are wearing blue.
2) Donate to the Arthritis Foundation (www.arthritis.org). I already do that, as $1 from every purchase of Aureole is donated to them.
3) Sign up for the Jingle Bell Run/Walk, the annual 5K put on by the Arthritis Foundation.
My StoryI began experiencing regular pain in the fifth grade. I was 10 years old, and what began as after-exercise pain quickly became all-day-every-day pain. X-rays showed that I was born with a tarsal coalition in both ankles (basically, my ankles didn’t form correctly). I had two surgeries to fix my ankle, on November 22, 2004 and March 1, 2006. I was 13 and 14, respectively.
Although I healed from these surgeries, the pain remained. Then began the years that I call the Dark Ages. I traveled to doctor after doctor, all across New England from my home in Maine. I tried medication, acupuncture, yoga, pain clinics, and therapy. Eventually, a doctor at Massachusetts General Hospital believed in me and did something that helped. On January 14, 2009, I had my third surgery on my left ankle. Along with fusing it, they put a camera in my foot. There, they found bone that shouldn’t be there, scar tissue, extreme cartilage damage, and arthritis. I was 17.
At that point, we didn’t think much of the arthritis. My foot had been opened up twice before then, which could cause it, and arthritis can also be found in tarsal coalition patients. Besides, our attention was on the fusion part of the surgery. On June 25, 2009, I had my fourth surgery, where they removed the screw that had fused my ankle. I was 18, and two months later I was a student at Vanderbilt. I thought I was home free, and looked forward to a life without constant pain.
But the pain never ended. Spring 2010 came around and once the school year was over I was back at Massachusetts General Hospital. My orthopedic surgeon didn’t know what to do other than schedule a cortisone injection (my third one) and try to get me in with a rheumatologist. However, the rheumatology department was backed up for months.
And then everything spun into action. I woke up one morning in July 2010 and couldn’t open my mouth more than 8mm. My dentist sent me to an oral-facial pain specialist, who took one look at an x-ray of my jaw and told me I had arthritis. My joint was supposed to be a round ball but instead was flat from damage. This got me in with a rheumatologist at Mass Gen, and within 10 minutes of examination I had a diagnosis: psoriatic arthritis.
We thought having the diagnosis meant the pain would get easier. Unfortunately, it only meant the beginning of the fight.
See, I have an inflammatory autoimmune disease. This means that my immune system fights my body, which is demonstrated by inflammation. Inflammation in affected joints is a sign that the immune system is actually attacking those joints. This can include the bones and/or the cartilage, and can result in permanent damage. Case in point, my jaw and my ankle. The number of joints deemed affected and demonstrating inflammation when I was diagnosed? 56.
August 2010 saw me beginning my sophomore year, my job as an RA for first-year students, and my first arthritis treatment: oral chemo. As the months went on, though, the pain got worse. Soon, I was unable to sit in chairs for more than 20 minutes because of back pain, and everything hurt. My joints were swollen all the time. I got sick every 5 weeks or so because the treatment suppressed my immune system. I regularly missed class because of pain. And the pain just kept getting worse. We upped my chemo dose, but I wasn’t reacting. I regularly had to go on oral steroids to help with flares. Nothing helped.
In March 2011 I was all set to go on tour with my university choir. Then, the Wednesday before, I walked into choir rehearsal … and passed out. My pain had spiked too high too fast, and my body couldn’t take it. It resulted in my first hospital visit for pain, and I spent most of tour lying in the back of the bus or missing out because of pain and the bronchitis I developed as a result of my inability to fight bacteria and viruses. Within weeks, I was on my third arthritis treatment, which included injectable doses of chemo and another injection, both of them once a week.
Everything just kept getting worse. My pain was out of control. In April 2011, my kneecap started visibly moving out of the socket. When I went home over the summer, I started going to the chiropractor to help my back. As a part of trying to manage the disease, I went on a full anti-inflammatory diet: no gluten, no dairy, no hydrogenated oils. I switched treatments again, but I was still on 2 injections a week, which I did myself.
August 2011, I returned to campus excited for my junior year and to be an RA in another first-year dorm, even though my health was not good. Then, I was diagnosed with fibromyalgia, too. Fibro is characterized by long-lasting widespread pain and tenderness at certain points in the body, mostly muscles, ligaments, and tendons, although there are also other symptoms associated with it, like “fibro fog” and chronic fatigue. About 40% of people with arthritis develop fibro, and it is actually considered to be arthritis-related, although, unlike arthritis, it is not a progressive disease. However, when I was diagnosed, it was almost too much for me to bear. I couldn’t believe that there was something else wrong with me. At 10 years of pain, didn’t I deserve a break?
Apparently, I didn’t. September 2011 involved the worst flare I have ever had. The Sunday before I was supposed to go away for the weekend with a bunch of my friends, three of them had to take me to the hospital. Two days later, another one did as well, and she also let me basically stay at her apartment for 4 days. Needless to say, I couldn’t go on that trip. In October 2011, I changed treatments. But it was more than just that. My health was so poor that I had to make a decision: leave Vanderbilt, or leave my job as an RA. I loved my job so much, but my body could not handle school work and a job. I was barely managing existing, so I chose to resign. Halloween weekend 2011, 8 or so of my wonderful friends helped me move.
Between October 2011 and April 2012, my health fluctuated. The treatments seemed to be working, but I was still in so much pain. On top of that, I experienced massive chest pains that occasionally made me collapse. Most of the time, I was unable to do anything other than go to class, and that’s if I was well enough. Then, on April 1st 2012 (I’m not making this up I swear) I was brushing my hair when I heard cracking and crumbling in my hand. I ended up in a removable cast for 8 weeks – the inflammation had built up in my hand and put too much pressure on the tendons and bones for them to bear. It turned out that I had partially dislocated my hand from the pressure of the inflammation.
I was extremely lucky in that I was well enough to go to London for a month in 2012 to study. However, while I was there I had a hospital visit – my fourth in 15 months. I gave myself a flare from all of the activity, so the rest of the summer was spent resting. Around this time, my doctor actually changed my label to Rheumatoid Arthritis.
Last fall (my senior year of college) I was unable to move myself in, so two more of my wonderful friends helped my dad move all of my things. I’m took 3 classes, as well as an independent study, because my body couldn’t handle more than that. I got handicapped parking, and I drove to class because I couldn’t walk there. The arthritis created a Baker’s cyst in my knee, and I needed another cortisone injection to make it go away. I started infusion treatments, and that was the miracle.
My health future doesn’t look good. After this treatment that I’m on right now, there’s only one other possible treatment I could try. I need the FDA to approve more treatments and for more research to be done. If the disease isn’t stopped or slowed down, it could affect my future in more ways than just pain. If it keeps getting worse, I might not be able to student teach in the spring, or work in general. I might need joint replacements, or even organ transplants. I have to get my blood tested regulsrly to make sure that my liver is still functioning given all of the medications I’ve taken. On top of that, if this disease isn’t slowed down it might spread to my organs. I need more research, more treatments, and a cure. I cut down my coursework, I’ve cut out a large amount of food so that I can help my body, and I’ve cut out a lot of activity.
I want to feel better. This treatment is a miracle for me, and I’m so grateful for it. But it isn’t a cure, and even with it I still have bad days. I need a cure, and I believe in a cure.
Thank you so much for reading this. Even if you don’t do anything, I’d like to think that you’re more aware now of what living with arthritis is like, and you’ll be more equipped to make life easier for someone with arthritis. If you ever have any questions, I’d be happy to answer them.