Dorothy’s Story: Life with RA

February 15, 2015 in Uncategorized

RPF believes that sharing our own personal stories about living with rheumatoid disease is a great way to provide support for others. Knowing we are not alone in our experiences can be one of the most encouraging things.  We thank our supporters who are willing to share their stories and help others who are going through similar situations. Let's learn from one another! Email us if you'd like to share your story.

dorothy2Hi, my name is Dorothy. I was diagnosed 14 years ago this month. While I was pregnant with my last child, I noticed feet and hand swelling. I was pregnant, so it was normal. She was born in May. Two weeks after her birth was when I started with headaches. Non-stop headaches that felt like if I bent over to tie my shoes my head was going to explode! These lasted every day, all day and night. No pain medication would help. I finally went to the doctor about a month into the headaches. He referred me to a Neurologist. I was diagnosed with cluster headaches and was put on beta blockers and anti-depressants. The medication left me in such a cloud. I told him I didn’t want the anti-depressants anymore and he told me (and I quote), “you need them and you need to go to bed when you’re tired and wake up when you are not.” Mind you, my daughter was about 3 months old, my son was 7, and I worked full-time. By this time I was giving up on help. It took me an hour to get moving in the morning. My head still hurt and my hands were so very swollen.

My father suggested a rheumatologist. He had RA later in life and thought it would be a good place to start. I went to see one and all I remember is sitting in his office while he spoke to me about the pain/symptoms I had and bursting into tears! I wasn’t crazy! He did some lab work, x-rays and started me on Prednisone and MTX. Once the lab work came back positive, I was started on Humira, too. I was starting to feel normal again. The headaches finally went away and I could walk again. Then, came the liver problems and cough. I had to stop the MTX.

Since then, I have been on so many different “cocktails” of drugs. Flare-ups come and go and I have weakness in my upper leg muscle. Pain is something that I have come to live with and the swelling is now “normal” for me. My “fat hands” used to bother me so much. One day I was at the mall and decided I was going to buy myself something to take my mind off it. I bought myself a diamond ring. I call it” my fat finger ring” and look at it instead of my “fat fingers”. I also started making goals for myself. My first goal was set when my daughter started kindergarten. I swore I would be her softball coach once she reached 4th grade. I coached her softball for 4 years. My next goal was to play softball again myself. I did that 2 years ago. I fell on my face once when my leg muscle gave out, but dusted myself off and made it through the season. Last year was bowling. I am currently on a league and bowl every other Friday. I do have some friends who will back me up if I have a flare-up, but so far I haven’t used them.

dorothy1

My family at The Color Run last year. It was my "goal" to finish..and I did it!

One of the oddest moments for me was about 3 years ago. I have a lot of friends that I cherish in my life. Five of us were at lunch together (something we did monthly) and one girl noticed I was looking tired. I told her I had a treatment (as I called them) this week and wasn’t feeling 100% yet. She asked me what I get for treatments and I told her Rituxan. It’s a form of chemo. All the other girls at the table stopped talking amongst themselves, jaws dropped and looked at me like I was “crazy.” They never knew what I got for treatments. It’s funny now when I look back at that day, but at that moment I think that is when I realized I had a disease. I was sick. All the trips to the doctor, all the pokes and probes and all the nausea and fatigue...I never thought of myself as sick. It took 5 looks from my closest friends to trigger something inside me.

18 years later, a divorce, going back to school, graduating, a new job, losing my father to cancer and all the other stresses of normal life have taught me so much. Living with RA sucks, but it isn’t going to get me down. If I have to get up an hour or two earlier than most to sit in my chair and wait for my pain meds to kick in….so be it. I am not going to sit here and be scared or let RA ruin the one life I have. I am probably the most stubborn person you will come across, just like my Dad. He was told he wouldn’t walk past the age of 50 and proved them wrong. I am going to fight this with aggressive drugs, fight through the pain and live every “good day” to the fullest. I am not crazy…I have RA.