Thursday, December 31, 2009

Changing My Working Environment

RA completely threw for a loop, which meant that my career was a big question mark. At the end of maternity leave, I was still unable to dress myself or hold chalk. Teaching for the Spring term seemed unrealistic, but I found ways to adapt.

I approached my chair and my dean separately to deliver the news and to seek help. They were very understanding, and connected me with our office of disability. My case was documented, along with doctors' notes, so that my reduced capacity would not be held against me for tenure and promotion. The office explained the family and medical leave act to me. Since I was documented in the university system as having RA, I could miss more work than usual and still be protected by law. I was already missing quite a bit of work because I was constantly sick and felt awful. As my medications began to work, I missed school less.

Teaching was another obstacle. I couldn't use a chalkboard, so I wrote my lectures on overhead transparencies the night before. Lecturing was pretty dry, but I survived. I told my class that I had problems with my hands and couldn't use the chalkboard. This year, I'm feeling much better and will use chalk!

Between teaching, proposal writing, resting, and taking care of Sparky, I had no time for myself. I was going to bed at 8 pm just to survive. It was very hard on us as a family. Again, as the medications started to work, it got a whole lot better.

I am steady state now, and I list here the adaptations I have used at work to "survive":

1. Ergonomic everything.
2. No labwork - hire an awesome postdoc.
3. Less conferences. This makes me sad because I think I'm missing out, but traveling kills.
4. Less proposal writing. This could be detrimental to my funding situation, so I carefully select which solicitations to answer. Why waste time on something that has a 1% funding rate?
5. Plan ahead. I don't know how I will feel day to day, so I must complete everything far ahead of time in case I have a bad week.
6. Stop when it hurts. If I feel increased pain at the end of the day, I must stop working. If I push on, then my body will not cooperate the next day.
7. Ask for help. Ask ask ask. If you can't open a door, open a soda, or lift a bag, then ask for help. There is no shame in protecting your body.
8. Ditch the laptop - its just going to hurt if you insist on using it.

My university is above and beyond understanding. Not all places are so pleasant. I'm lucky to be where I am, to work at my own pace, and to be successful on my own terms.

Wednesday, December 23, 2009

One Year Since

It has been one year since my diagnosis. I write this to bring inspiration and hope to any other scientist afflicted with rheumatoid arthritis. I'm still here, my career is fine, and I'm enjoying life.

The RA first appeared in May 2007, but it wasn't successfully diagnosed until December 2008. While writing my thesis, my fingers swelled up to where they wouldn't bend. I thought it was carpal tunnel syndrome. I started wearing hand and wrist braces, but the pain later migrated to every joint of my body. During my post-doc, my symptoms progressed and I was barely able to perform my laboratory work. I couldn't hold tweezers. My shoulders were killing me and the doctor sent me to rehab without trying to find a root cause for my pain. I finally improved after becoming pregnant in Jan 2008. In fact, I never felt better!

I moved to my job as an assistant professor while six months pregnant. Six weeks after Sparky's birth, the symptoms came back quickly, but they were far worse this time. I was unable to walk, to dress myself, brush my teeth, hold utensils, hold my child. I went to the bathroom with the door open because I was afraid that I would not be able to turn the door knob to let myself out of the stall or bathroom. My maternity leave was hell. I was terrified that it would be like this forever, and I had no idea what was wrong with me. My new doctor recognized my remission during pregnancy, which pointed to a correct diagnosis of RA. It was a scary time, because my RA numbers were off the chart. I felt a mixture of emotions, much like the stages of grief. I was relieved that it wasn't life-threatening. I was terrified because RA has no cure. I was angry because my body had betrayed me. I was lonely because no one else understood what it felt like. And I eventually accepted my diagnosis.

The doctor gave me methotrexate. He said that it worked for about a third of his patients, and others had to take expensive biologics like Enbrel. He also said that it might take months to work. I started to feel better in two weeks, and now, I am at 90%. I have no immune system, so I miss a lot of work from illness. Sometimes I wake up, and one limb is stiff and sore unexplainably. I just push forward and go. Staying in bed only increases the pain. Just get up and go.

Seven months later, I was diagnosed with a second autoimmune disease, Sjogren's. RA is an autoimmune response to tissue lining the joints. Sjogren's is an autoimmune response to glands that produce moisture. For instance, I have dry eyes all of the time so I look stoned. My second diagnosis pissed me off for a day, but I moved on. What's two AI diseases compared to one? It's all inconvenient!

I am still unable to work in the lab, but I can type to high-heaven thanks to all the ergonomics available. My life is steady-state now, and I like how things are given the circumstances. Most importantly, I can pick up my 25-lb not-so-baby boy and swing him around.

In later posts, I will describe how RA has effected my career and family. I emphasize that RA has changed my life significantly, but it hasn't stopped my life. With significant lifestyle changes, I have found happiness in my own way. By writing this, I give up a piece of anonymity because anyone who knows me and who reads the blogs will connect the dots.