Good morning y’all! For World Arthritis Day, the IAAM is asking us bloggers to tell our Onset Story. I know I’ve already talked about that some here and here, but maybe I ought to start from the beginning and give it a bit more context.
Nebraska. We lived there until I was 10. As a child I loved to swim and to run around with the other kids in my neighborhood. I also took French & piano lessons, ballet & tap lessons, and was active in Girl Scouts and 4-H. I started having bad headaches & nose bleeds when I was 4 or 5; they were eventually diagnosed as migraines. By the time I was 9 I had started to develop a more womanly body than most 9-year-olds have. I started wearing a real bra, not just a “training” one.
When I was 10 we moved twice in one year. The first time to Pennsylvania, where my dad (a math professor) was on sabbatical & doing research. While there I kept up with my dancing, in the form of Irish Dance lessons. The second move was a more permanent one: College Station, TX.
In the small town we moved to in Texas, I had to give up dance lessons for a while. The waiting lists were a year long at the shortest, so I spent my first year there pretty sedentary. I had a lot of back pain, but the doctor told my mom it was just from “growing so fast.” Our second year there, my parents put in an in-ground swimming pool, so I got to swim any time I wanted from March through October year in and year out. I joined the local swim team and swam competitively for a few years while keeping up with my 4-H group and music lessons (while in Pennsylvania I added clarinet lessons to my list of activities).
In 9th grade I joined marching band in high school. I dropped out of swimming and 4-H; there just wasn’t time for them anymore. I marched from July until December every year, as our football team made it to state playoffs every year. I still had a lot of back pain and eventually had physical therapy for it. I started medicine for my migraines, too. My junior year in high school I started having trouble breathing, something that was eventually diagnosed as “costrocondiasis” (otherwise known as inflammation of the lining of the lungs). I took steroids and was miraculously cured of both my breathing problems and my back pain. But that couldn’t last forever and by my senior year in high school I was ready to have breast reduction surgery, but was told to wait until my growing process was complete (around age 21).
I went to college close to home. I continued to stay active by walking a lot on campus, ballet, swimming, and fencing. My migraines ramped up and I started having trouble focusing because of all the pain. I was diagnosed with cyclothymia my junior year and went on medication for that. I started having bouts of “carpal tunnel” in both wrists and “bursitis” in both ankles while working in the computer lab. I met my future husband that year and set a wedding date for the summer after my 22nd birthday. Before the wedding I went ahead and had my breast reduction surgery, thinking that my time of pain would soon be over.
The back pain relief lasted two and a half years. By that time we had moved to Dallas and I had had my first baby. During pregnancy so much about my body changed, including my migraine process, which I’d had under control for the last few years. Pregnancy changed other things, too, like my ability to exercise. Plus we lived in an apartment far from anywhere good to walk and the pool at the complex was not really for swimming (more for lounging). Still, I resumed taking long walks after my baby was born. A couple months later I started having a lot of pain in the middle of my tummy and didn’t know what was going on. I threw up until I couldn’t any more. A trip to the ER told me that I had gallstones and I had my gallbladder removed laprascopically. A few months later I was rear-ended on a dark rainy night. I damaged my left shoulder and neck and had 8 weeks of physical therapy.
Time moved on and so did we. Three times in one year. First we moved into our little dream house. It was a lovely little house. I kept active taking care of the little yard and walking everywhere there was to walk in town. When my car was totaled, we hadn’t replaced it and my husband’s car was a stick-shift, which I didn’t know how to drive. So we walked: to the park, the library, the grocery, and to church, friends houses, swim lessons, and playgroup. It was great living in a little tiny town. 🙂 Six months later my husband was laid off. While he was laid off, we traveled around a lot while he looked for work. I started having anxiety attacks again and gave myself whiplash one night waking up from a sound sleep. I went to chiropractors in three towns working on that issue. Nick eventually got another job in another town and a two week window from job offer to job start. We moved to a rental house in the town we now live. While the chiropractors had helped with my whiplash, I was having another problem: numbness & tingling in my arms. I was assured over and over that this was not caused by the whiplash, nor the car accident. I went through months of testing (nerves, bloodwork, a sleep study) and nothing was found.
A couple years later we were living in yet another house (the 3rd move), having another baby, and life was settling down a bit. We’d down a lot of work getting the house ready to move in to and had finally made some friends in the area. I found all the good parks and walking trails. I had my second baby and all seemed to be moving along all right. Then one day about 4 weeks after having boy #2, I started having severe pain like I had only felt a few times in my life (childbirth, gallbladder attack). It wasn’t just my arms or my legs, it was also my back and my fingers and shoulders and elbows. Everywhere, all at once. I checked back in with my doctors to see what they thought was going on. I went through nerve testing, blood testing three different times, and was referred to a rheumatologist. My doctor said “I’m pretty sure you have rheumatoid arthritis, but I want a second opinion.” The rheumatologist agreed after he read my history of duel carpal tunnel issues and duel bursitis’ and where all the pain was. He checked my range of motion and took xrays of my hands and feet. I was started on my first dmard that day, along with steroids to take during the 6 weeks it took for it to kick in. In the last 7.5 years I’ve taken a lot of different medicines and tried a lot of different therapies. I’ve had trouble finding any that give consistent pain relief that don’t involve multiple infections per shot. But I’ve written all about that already in other posts.
Now you might be wondering: why all that lead up? Why not just say: oh, I got RA when I was 27 right after I had my second baby. Three reasons. 1) I wanted you to have a portrait of me that was before. The one that was active and awesome and did cool stuff. 2) I know there’s a lot going round and round the last few weeks about the link between childhood obesity and RA. As you can see, I was not an obese child…and yet I have RA. I am still reading all those links and looking at the research, but am a little more than skeptical. 3) I wanted you to see that I had a background with pain in it. It wasn’t something new. It wasn’t just me whining about a little twinge. I know what pain is and isn’t. It isn’t that twinge in my left shoulder from having sat here and typed all this. It is my back and my neck and knees and has been all week long. But enough about that.
Thanks for reading this very long, rambly post. I didn’t mean to go on and on. In fact, I left out a whole lot, like working sci-fi conventions and at a book store and temping in a giant warehouse. I left out family and holidays and personal beliefs. I only left in the parts that I thought were important.
If you’re reading this post and have an autoimmune condition, I’d like to invite you to share your onset story with us in the comments here. Or at least include your numbers. Weight at onset/ Age at onset / Age now. My numbers look like this: 125/21/35