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Steve’s Rheumatoid Arthritis story
Tish B’s Rheumatoid Arthritis story
Sarah A’s Rheumatoid Arthritis story
This is Steve’s onset of Rheumatoid disease story, in his own words.
It all started right after I celebrated my 25th birthday. Just a few months later, I began having trouble walking and picking up things like a coffee cup or a pen. I was falling and tripping all the time and the pain was ungodly! It felt like someone was trying to pull my hips right out of their sockets and my fingers would swell so bad I couldn’t bend them. I had just moved across the state to be closer to my family and begin a new job. As soon as my health insurance benefits started, I went to see my family doctor. He suggested the possibility of my symptoms being of many different diseases and disorders. Up to this point I had been perfectly healthy. I’d never had a surgery or a “health condition.”
I finally went to a rheumatologist who diagnosed me with a progressive form of Rheumatoid Arthritis which began in my hips and legs and fingers and progressed shortly after my diagnosis to my back, neck, hands, fingers, shoulders, hips, legs, toes and feet. I was also diagnosed with Fibromyalgia as well as Bursitis in both knees.
When I was first diagnosed, I was well undereducated about the disease. Even though I’m a healthcare professional, I’d never encountered anyone under the age of 60 with any form of arthritis – much less a man with it. I remember coming home from the rheumatologist the day of my diagnosis in tears. I sat down on my bed and just let it all out. I threw things against the wall. I screamed at the top of my lungs. I cried until I couldn’t cry anymore. I felt like my entire world had been turned upside down.
I’d always been a independent and self-sufficient person… so learning to understand and respect my physical limitations as well as ask for help when the disease prevents me from doing ordinary every day tasks – well… it was going to be an obstacle. I kept thinking in my head that no one could understand what I go through. Who would want to date/love someone with this disease? How long before I can’t work anymore and I end up in a wheelchair? This was a very dark moment in my life.
My doctor explained her plan of treatment and asked me to make 3 goals every year of something I couldn’t do now because of the disease but would like to be able to do in a year’s time. She explained how the medications work hand in hand with moderate exercise and a healthy diet. She also assured me that I was not fighting this alone.
I started on prednisone 40mg a day as well as methotrexate and painkillers. After a few months, I began taking Biological medications like Enbrel and Humira (which I still take with the methotrexate). Although the thought of injecting a needle into my abdomen scared me… I overcame my fear. I made it 5 years before I had to go to Pain Management and I’ve done an extensive amount of research on the disease to better understand it as well as educate others.
Even though this is a disease I wouldn’t wish on anyone, in a way it’s been a blessing in disguise. I was always a person in a hurry and RA has taught me to slow down and pace myself, and allow myself extra time to get things done. It’s taught me to know my limits and listen. It’s taught me to never take things like being able to walk or run for granted. It’s taught me to not be afraid to ask for help when I need it. It’s taught me to know my legal rights and not be afraid to say “I can’t do this” when I’m in pain.
I’m almost 31 years old now and I still continue to fight! My toes and fingers have begun deforming. I sometimes have to walk with a cane. Some days I have to stay in bed and plan activities like social engagements and work for another day. But I’m still the person I was before the disease, only wiser and dedicated. This disease may have altered how I live my life – but it will never stop me from living my life the way I want!
This is Tish B’s onset of Rheumatoid disease story, in her own words.
I was born in France to a military dad and traveled many areas of the USA, and (spent) three years in the Philippine Islands, finally settling in California for the duration of my teen years. I had a healthy childhood with four other siblings. My sister was born with a birth defect of the hip for which she wore a boot and a brace, but otherwise we were healthy kids.
I had big dreams of going into the Peace Corps, but that didn’t happen since I became married and had my first child at 21. I am not college educated, but have always been a hard worker and enjoyed the outdoors immensely with my three little ones and would camp and loved gardening. I had one bout of hospitalization when I was 28 with a kidney stone, but otherwise never got the flu or even colds.
Fast forward to my late forties and I was still strong and capable of doing anything I set my mind too. I came to the Midwest and married a wonderful farmer/rancher whom I could help drive the trucks and work the cattle. I also held a job in an ag lab for eleven years testing feed, soils, and plants for producers. I adored this work and moved onto another lab job involving seed viability and traveling to other areas for the company at harvest.
This was in 2004, this is when I believe my RA set in, I had participated in a free flu vaccine clinic, my first one ever, and then suddenly things began to change for me. I don’t blame the flu vaccine, but odd things began to happen. My hand was always numb and hurt. Awakened at night by the pain I just figured it was carpal tunnel, so I stopped the activity and it would go away. My blood pressure was out of control, but resolved itself when I was put on HBP meds, the arm and shoulder pain was due to my persistence of getting any job done! Also during all this I had an episode of weakness in my arms, then unusual spikes of blood pressure. I came home one evening from work and felt so odd it was frightening. I was tingling everywhere on my body and the fatigue was unbelievable, my husband rushed me to the ER and they couldn’t understand what was wrong. I had an MRI, did a Lyme’s disease test, which was negative, had a renal Doppler artery test and heart stress test, nothing. The only thing the internist could say was it appeared to be environmental. Huh?
So I moved on and the blood pressure was stabilized and things seemed fine, however I had flu like symptoms for the following years, my hand pain went away but the nagging shoulder pain stayed on, when I persevered at something too long. My co-workers at the vet clinic I worked in were getting the flu, but never me. I always felt like “that flu bug is trying to get me too,” but I never got the usual goodies that come with that.
I felt lucky and proud at fifty that I could help with the cattle and work 50 hrs a week at my job without any sick days. 2008 I started a job at an animal shelter as their manager and executive director. It was a huge undertaking since the past eighteen years of their operation, or lack of management, it was a total mess. I was so proud after a year of putting things in order there, we won the shelter of the year award for the state!
I thought the fatigue I was experiencing was due to the many 60 hour weeks and possible burnout. In December 2010 I noticed a nodule growing on my finger, and it kept growing, this is the same hand I thought I had carpal tunnel syndrome, I saw my primary care giver and he just said it was a cyst. By April 2011 I was totally fatigued and the nodule kept getting bigger. I went to my GP, a new one, and thank heaven for her, she looked at that nodule and said I needed a RF test: WaLa!!!! Positive. I had to leave my job, due to burnout, but also I could no longer handle the way I was feeling, and the onset of horrendous pain.
It has been a long haul figuring this out, but am glad to have an answer. I am seeing a rheumatologist and a therapist. My therapist saved my sanity, as this disease has progressed to an everyday reality, I thought I was going to lose my mind. I love good physical working; I prided myself I could do anything that someone half my age could do. I could always handle pain; I had my three babies au naturale, but with help from other warriors and my therapist I “will” find new avenues to help me be proud of who I am with this awful disease. I don’t want this disease to define who I really am.
This is Sarah A’s onset of Rheumatoid disease story, in her own words.
My name is Sarah and I am 22 years old. I have just recently been diagnosed with RA. At a very young age I was diagnosed with JRA (mainly affecting my knees), which I am fortunate to be able to say was mild, but still a presence in my life. In high school the pain and symptoms of JRA completely disappeared even into the first 2 years of college. Slowly I began to feel the familiar joint pain I had grown up with again. At first the pain usually corresponded with poor weather. If it was a rainy day, it was a bad joint day.
The 3 months before my diagnosis was a different story, joint pain went from mild to severe, from sporadic to chronic and constant pain. The affected joints included not just my knees, but hips, ankles and wrists. My knees especially felt hot and appeared swollen and puffed up. My ankles and wrists, even my fingers were the same. My body felt so weak. Like a lot of people will say, the pain was terrible, but it’s the fatigue that brought me to my knees… sometimes literally. Before being put on the steroid, prednisone, I was sleeping at least 10-13 hours a day, never missing an afternoon nap.
My rheumatologist decided to first put me on Plaquenil, in addition to Mobic and tramadol for pain. Along with other issues and symptoms, which I now think stem from RA I am on 8 prescriptions.
I recently celebrated my 22nd birthday, sadly it wasn’t a “good joint day,” a shopping day out with my mom was cut short and the only celebration I really wanted was a quiet dinner out and an early bed. I would never have imagined that this would be the way I would want to celebrate my 22nd birthday.
RA has brought a lot of issues into my life that I can’t control, my mom constantly reminds me that the one thing I can control is my attitude. There are days when I cry to her on the phone telling her how worthless I feel. Combating these issues is so much harder than living with physical pain.
I don’t want to be on drugs. I don’t want to feel high or buzzed the way tramadol makes me feel. I don’t want to lose my appetite the way prednisone does. I’m taking steps towards a more holistic approach towards my health such as seeing an acupuncturist, a kinesiologist and adopting a different/better diet for those with RA.
I’ve joined a yoga studio, both to relieve pain and to get myself moving. This has given me so much hope and actually relieved pain. My yoga teachers are so kind and sympathetic towards my condition and work and encourage me through my good and bad days. Walking out of yoga I feel like I have actively done something for my health, not just swallowed a pill or taken a nap, but physically contributed towards conquering my RA. I am more than this disease, I will not let this overcome my life, my conversations and my attitude.
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