Brenda Ready’s Journey
Here is my story- thanks and kudos to you for such a great site. Your blog has become so much more. It is a source of inspiration to many. Your FB page is also a great avenue for those who suffer from RA – what a great service you have provided and created. Truly as a former forum on RA I understand the challenges you face. You have done a superb job.
Self-diagnosing RA issues
Last week after my Orencia infusion, where it took over an hour to find a vein that would give blood in addition to IV therapy.
I took to the internet to try and diagnose myself. I have done this numerous times in the past 7 years. In addition to the bloodless veins, I have been having a tough time with my neck.
You may be familiar with some of my symptoms, knife stabbing eyeball pain radiating from the rib cage upwards through the shoulder to the neck -a masseuse’s nightmare- muscles and tendons so tight they feel like a rock, alternating from the right to the left side for the past 3 months. After 40 minutes of research, it dawned on me that my Reynaud’s disease was active again. Sadly years later there still is limited information.
Finding online support for rheumatoid arthritis
I was, however, very excited to find the RA Warrior site. What a delightful informative site. You see, in 2007 I started my own RA Forum, after having had bad experiences on several other forums that seemed to attract trouble.
It was a great place, we had only 25 members. We shared daily events, new information. Mostly it was a place to connect, knowing the other members could relate to the insanity we all were thrown into once being diagnosed for RA and other autoimmune diseases.
One day my best RA friend who helped me run the forum died. Laurie was a wonderful woman, who was unable to use most RA drugs and suffered complications from prednisone and died suddenly. Everyone on the site was affected by her passing and gradually the board disappeared.
Living with juvenile idiopathic arthritis
I was born with a birth defect, leaving me deaf in my left ear and with what is called a rye neck (similar to torticolis). I have had a lifetime of neck and back problems accompanied by severe headaches. I was also diagnosed with juvenile arthritis.
I was able to combat these problems with chiropractic, aspirin and ibuprofen. In 2001 while on vacation my husband had a heart attack. We were in a small town in Colorado and he had to be medivaced out. In 2004 my son was diagnosed with Hodgkin’s. When they say trauma often leads to full-blown RA, well for me they weren’t joking.
I opened an Internet Cafe and espresso shop in May of 2004, and in late October my foot felt as if it was broken. Several days later I went to the ER. The doctor there said I had fluid in my toe joints. He recommended I see a specialist- a rheumatologist. My heart sank. My GP had just done a third blood test. The initial results indicated Lupus. My father and grandmother both battled RA. Within a week both my feet and hands were “broken.”
Within 2 weeks I was seen by a RA doctor, who confirmed, along with my last blood tests that indeed I had RA. He said my Rheumatoid factor and CCP results were off the chart. He noted that X-rays confirmed RA activity. He wanted to put me on Enbrel as soon as possible. My insurance company disagreed. He put me on steroids and MTX, several weeks later I thought I was having diarrhea, only to discover the toilet full of blood. The first of many allergy reactions I would experience over the years to numerous NSAIDs, and RA drugs.
Battling with insurance companies
Over the next 2 years, my doctor and insurance company argued. My doctor finally beat the insurance company, but he had to turn me over to a different doctor. The University Hospital agreed to administer my Enbrel shot twice a week. It was crazy, but it was better than being bed-ridden.
I spent 4 months unable to care for myself. I was so embarrassed, humiliated, despondent during that time of my life. Because I looked “great” it was hard to explain why I was no longer able to work, to accomplish even simple tasks. I began to think maybe it was in my head. Maybe I was wanting sympathy because my husband and son were ill. I applied for Social Security Disability and closed my business.
In 2007 with the help of an attorney I was finally approved. I did not know whether to laugh or cry when the letter arrived. My attorney had requested a special hearing. The letter was an inch thick. There was one paragraph that sticks in my mind – the judge gave the most credence to my GP who had spent 10 years trying to figure out what was wrong with me. She said she could not believe that I continued trying to work, continued to have a positive attitude, despite the debilitation that had occurred over the years from RA, Fibromyalgia, Reynauds.
Coming to acceptance with RA
It took 5 years for me to begin to feel like I might just be able to live with this disease. In 2010 I was diagnosed with psoriatic arthritis (just another pain in the - well you know). With the help of biologics, numerous doctors, my husband and son I am able to walk today. I do not think I will ever be able to resume the life I had. I will never regain that sharp mind, the quick wit, the never-ending energy to work 16 hours a day, 7 days a week. That Brenda is gone.
But the new Brenda is going to be okay. I tell myself that every day. At night I lie in bed and thank God for giving me another day, and ask him to find a cure for all who suffer from auto-immune diseases. I know there is no going back.
I know that we all would change things in our lives if we could. But somehow there is a larger part of me that realizes that this too, this insane disease was given to me for a reason I will never know. That it too is a part of my journey. So I just keep on trudging, keep on keeping on and each day I find something else to be grateful for amidst the RA insanity.
Right now, what RA tips would most be helpful for you?