Over the next month, my pain and ability to function became progressively worse. It started with one joint at a time, but as time went on, multiple joints would be affected at once. Usually the pain would only last in any given joint for a day or two at most, but I was constantly in pain somewhere in my body. Other than that first couple of days with my left hand, though, none of my joints seemed to be swelling. It also became increasingly clear that what I had assumed was acne on my face was actually a rash, and that was getting worse as well, especially around my eyes. The rash also began to appear under my arms and over my chest, but that didn't bother me much. On my face, however, it bothered me a lot.
When the day of my first rheumatologist appointment arrived, I was terrified of what she was going to tell me. It had taken three weeks before they could fit me into their schedule for an appointment, and that allowed me way too much time to do my own research on WebMD. I was Googling my symptoms compulsively, and the search results were not reassuring at all. Lupus, rheumatoid arthritis, fibromyalgia, dermatomyositis - each possibility was scarier than the last. There was also a type of arthritis that was associated with ulcerative colitis, which I've had since I was about twelve, but the arthritis symptoms typically appeared during a colitis flare up, and my case had been well-controlled by medication for years.
My appointment was at 2 PM, and I had taken the whole day off work, assuming that I would not be able to get through the morning and keep it together in public. I was right - I was a tearful mess the whole day leading up to the appointment.
However, after a two-hour appointment that included an in-depth interview about my pain and functioning, a physical exam, x-rays, and assorted lab work, the rheumatologist tentatively agreed with my primary doctor that I was likely suffering from reactive arthritis, and it would probably clear up on its own in two to three months.
That wasn't a guarantee, though. My rheumatoid factor test had been negative, but that didn't necessarily rule out rheumatoid arthritis. I learned that rheumatology is really a practice of ruling out. If the symptoms went away after a couple months, it was reactive arthritis. If they didn't, or if new symptoms appeared, it would be time to consider something else.
Still, I was relieved. I could get through a couple months. The doctor gave me prescriptions for heavy-duty anti-inflammatories and a non-narcotic painkiller called tramadol, and I left feeling hopeful that once this cleared up, I would be able to get back on track with the baby plan.
What I found, though, over the next several weeks, was that nothing seemed to help the pain, and it kept getting worse. By mid-August, I'd developed pain in my feet that made every step feel like I was walking on a bed of knives. For about two weeks, I was barely able to walk, and was completely unable to work. Just walking from my bed to the bathroom was pure agony. The joint pain continued to migrate from joint to joint, but the pain in my feet was constant. The only way to alleviate it was to stay off my feet. The rheumatologist called in several different types of anti-inflammatories, and I tried some vicodin that I had left over from a dental procedure years ago, but none of the drugs had any effect.
On Wednesday of the second week that I'd been unable to work, I called to make another appointment with the rheumatologist because I could no longer take the pain. They couldn't get me in until Friday. I called my mom at work in tears, because I couldn't think of anything else to do, and the pain was completely unbearable. She ended up asking to leave work early, and she took me to the emergency room.
The ER was a big fat waste of money. I paid $200 to have the bitchiest, most patronizing nurse practitioner I have ever met to take two minutes to glance at my feet and tell me that it was probably plantar fasciitis. She gave me a prescription for vicodin (despite my telling her that vicodin didn't help), and referred me to a podiatrist.
The podiatrist agreed that it was, indeed, plantar fasciitis, but he refused to even consider that it might be related to the joint pain, as I kept insisting it was. (Spoiler alert: as it turned out, I was right - but I didn't know that for sure for many more months.) He gave me exercises to do and recommended that I buy a pair of cross-trainers. I did the exercises, but refused to budge on the shoes - if I was going to spend a ridiculous amount of money on shoes, they would at least be work-appropriate. I ended up buying a pair of Danskos, which several people had recommended to me. When he saw them, he shook his head at me and told me that slip-on shoes were bad for plantar fasciitis, and I told him to fuck himself, but only in my head. The one thing of value that I actually got out of those podiatrist appointments was cortisone shots, but that was a month or so later. I'm getting ahead of myself.
When that Friday appointment in August with my rheumatologist came around, I begged and pleaded for prednisone. I knew the side effects weren't pretty, but thus far, it was the only drug that had even the slightest impact on the pain. I'd already spent literally hundreds of dollars on co-pays for prescriptions that had no effect. The rheumatologist relented. She started me on a 3-month course of 15 mg a day, and gave me instructions to start tapering off the dose after six weeks.
Within two hours of the first dose, I was able to walk without looking (and feeling) like I was 80. Within a day, there were still twinges of pain here and there, but I was able to return to somewhat normal functioning. I was able to go back to work on Monday.
But by that time, I had already fallen seriously behind. My job primarily involved doing home visits with clients, and we were expected to complete approximately 15 home visits per week. We had a bank of days that we could use for when we didn't meet the numbers (whether it was to take sick or vacation leave, or because we'd had excessive client cancellations and no-shows), and by the beginning of September, only two months into the fiscal year, I'd already used all my days, and my numbers were still too low.
In addition, all the medical bills and prescription co-pays had completely decimated my savings.
Still, I kept telling myself that once this reactive arthritis had cleared up for good, I could get things back on track.
But the worst was still to come.
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