Hi my name is Rena McDaniel and I write two blogs: The Diary of an Alzheimer’s Caregiver, where I deal with being a caregiver while dealing with my own diagnosis of Felty’s Syndrome. The other is The Million Mile Blog, it is a travel planning, review and tips blog. I live in South Carolina with my husband of 23 years and my mother. I have two children and two grandchildren (with #3 and 4 coming in December when my daughter has twins!). Thanks so much to Jade for hosting me today.
Felty’s syndrome is a complication of patients who have rheumatoid arthritis. It is diagnosed by the presence of three things: rheumatoid arthritis, an enlarged spleen and an abnormally low white blood cell count. Patients with Felty’s syndrome can have more infections than the average person and can develop leg ulcers. Felty’s syndrome is uncommon. It affects less than 1% of people with rheumatoid arthritis.
I was diagnosed three years ago with Rheumatoid arthritis. I was sick for a long time before this diagnosis. At the time I was being treated for a car accident that I had in 2009. At first I was just sore all over, especially my left arm and neck.
I was first diagnosed with a strain. After I went back to work I began to have more problems. One day my feet would be sore and swollen and I would secretly take off my shoes to work. The next day my hand would be swollen or it might be my shoulders. I was then diagnosed with Fibromyalgia. I tried physical therapy, acupuncture, medicines etc. Nothing seemed to work. It got so bad that I was no longer able to work. I couldn’t drive because I couldn’t raise my left arm or look over my shoulder. I kept getting treatment and it seemed I was getting worse. I finally just gave up and for almost a year I was pretty much bed ridden. Things were happening in my life that were stressful: my son was serving in Afghanistan, my husband getting laid off, my daughter graduating and both of my children getting married. Everyone kept telling me I had to fight this and I don’t know how many times I heard that it was all in my head. All I knew was I felt very sick. I couldn’t eat because my stomach was so swollen. I quit having bowel movements. I went on this way for a long time and I honestly felt like I was going to die.
My husband finally talked me into going to the hospital ER. They ran tests and my blood counts had bottomed out. I don’t remember a whole lot of what happened, there was alot going on at once. I remember a doctor telling me I was very sick and that if I had waited another three hours I would have died. I was given three blood transfusions and put into the ICU for about a week and a half while they ran, as they told my husband, every test from A to Z. I had eleven doctors total. This is when I was diagnosed with RA and I first heard the words Felty syndrome, even though it wasn’t explained to me. I admit I was just glad not to hear it was all in my head. At first the doctors didn’t think that I would survive they called my family in. My siblings from SC and FL soon arrived. My son was stationed in Japan at the time and the Red Cross flew him home. I will always be thankful for that.
As you can see I did survive. I spent three and a half weeks in the hospital. When I was released we packed everything we had up and moved to SC to start a new life. My husband had a new job with medical insurance, even though I was preexisting for the first year. That is what started this journey through the ups and downs of Felty’s Syndrome.
Today with the help from a great Rheumatologist and a new infusion drug called Rituxan I am able to live a somewhat normal life. I still have to be careful about infections but I can take care of mom and do most of my house work. I don’t vacuum or mop anymore, I can’t lift things very well and sometimes I just get so tired I can barely stand up. But I am alive and very thankful for all the help and support I get from my husband and family. My husband does the manual work that I am unable to do and between the two of us we have made a great life in South Carolina.
Follow Rena on twitter at: @rm29303
You can read my post on the topic of ‘How has life changed since you’ve had a disability?’ over at Rena’s blog here.