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.


PUI prof said...

Thanks for sharing your beautifully written story. Best wishes for a healthful, pain-free Holiday season.

Genomic Repairman said...

Best wishes for you. You have overcome your obstacles and give hope to many others. Thanks for you writing.

Comrade PhysioProf said...

You kick ass for having the courage to post about this! Happy New Year, JP!

Unbalanced Reaction said...

Wow, amazing. You are a rock star!

Anonymous said...

Your story has been always an inspiration for me. I admire your straightforwardness, courage and passion. Thank you very much.

Another assistant female professor

ScienceGirl said...

Thank you for sharing this! Your courage and ability to enjoy life gives hope to those dealing with little understood health problems.

Anonymous said...

Thank you for sharing this. When I first got sick, I thought my dream of a tenure track job was over. But your frank, matter of factness about how you've been dealing with it has really helped me realize that I can do this.