Year 14 of Pain

Welcome back to Day 2 of Arthritis Week! Today, I’m telling my story. It’s a doozy, but I need to tell it. It isn’t enough to say, “I have arthritis and my life is difficult.” To understand the full impact arthritis can have, I’m sharing my story.

I 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 (putting a 4 inch screw in), they put a camera in my foot. There, they found that my tarsal coalition surgery hadn’t worked, 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.

Screw used to fuse my ankle

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.

Emily and I before a Red Sox game that resulted in multiple days of recovering on the couch.

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, which included 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?

My incredible friend Virginia who has helped me more times than I can count, including taking me to the ER and letting me crash at her apartment.

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 out of that dorm and into another.

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. I found out months later that I had partially dislocated my hand from the pressure of the inflammation.

What can I say? I’m a winner.

I was extremely lucky in that I was well enough to go to London for a month in 2012 to study abroad. 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. While I had a history of psoriasis and eczema – and there’s a history of it in my family – I hadn’t had any in years. Rheumatoid arthritis better fit my symptoms than psoriatic arthritis did. I changed treatments, as it was pretty clear that I did not respond to TNF or TNF-alpha inhibiting medications (such as Humira and Enbrel).

The fall of 2012 – 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. Then in December 2012, I started infusion treatments of Rituxan (another form of chemotherapy that inhibits B cells instead of TNF), and that treatment was the miracle. Two forms of chemotherapy (Rituxan infusions 4 times a year and Methotrexate injections weekly), daily doses of high levels of naproxen and oral steroids, and more pills for fibromyalgia – that was my miracle.

I was able to complete student teaching and graduate from Vanderbilt on time and with a good GPA thanks to my professors who made accommodations for me and thanks to my rheumatologist who is personal hero. In fact, I even had a job lined up when I graduated: high school English teacher.

Well, I think we all know how that worked out. I spent a year working myself to the bone, pushing my body to its limits, and dislocating my knee an awful lot along the way. Then, in July, I accepted the awful truth: I would not be able to work as a teacher any more.

My current future involves surgery, chemotherapy, resting, applying to graduate school, and figuring out what my life is going to be. Because everything I wanted for my life – to be a teacher and work full time and live independently – is now gone.

As of right now, there are no more treatments for my arthritis available. I’m on the last one. I need the FDA to approve more treatments and for more research to be done. This disease has taken away so much from me: the majority of my independence, my ability to work full time, some of my dreams, and, of course, parts of my body. I might need joint replacements, or even organ transplants, in the future depending on how the disease and the medications I take for it progress. I have to get my blood tested regularly to make sure that my liver and kidneys are 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’ve charged my lifestyle and I’ve changed my entire life because of it. I need a cure.

I have been in pain since the fall of 2001. Remember those ankle surgeries? Well, the first one didn’t work because of arthritis – even though I wasn’t diagnosed until almost a decade later. Last year my dad saw my ankle surgeon and was catching up with him when he mentioned that I have RA, and my surgeon told him that the first surgery would never have worked if I had arthritis in my body. It all comes full circle. I am entering my 14th year of pain, and it has fully taken over my life.

I want to feel better. This treatment is a miracle for me, and I’m so grateful for it, but it isn’t enough any more. I have chemotherapy 4 times a year, take 23 pills daily, do a moderate amount of exercise (as much as possible), and it isn’t enough. I need a cure, and I believe that a cure can be found. If you do nothing else, wear blue on Sunday, October 12, World Arthritis Day, and ask that others do to help raise awareness and show support for those of us with arthritis.