Welcome to the October edition of Patient For a Moment Blog Carinval hosted by Lorna at Life with RA is a Pain.
Change Came with my Diagnosis of
Psoriatic Arthritis and Fibromyalgia
 |
| Me at 29 before the diagnosis that changed my life. |
My health journey of change began when I was 32-years-old in 1999. On my knees for hours tiling the kitchen, I slowly tried to get up. Pain and tightness met me. My joints felt like rubber bands had been tied around them.
Days passed, and they did not seem to get any better. I struggled at work as a school librarian, wondering what I did to my knees. I hated getting up and down on the ladder to put away magazine boxes in my periodical room. I even dumped one those boxes out when I lost my grasp of it and almost fell off the ladder.
Finally, I went to my doctor. I didn’t go often in those days. I was young and life seemed good. I loved camping, fishing, and walking in my neighborhood. I loved working with my students trying to entice them to read. I had only one dark cloud hanging over me and that was an abusive husband, but another dark cloud was coming into my life that day in the doctor’s office. She took a look at my x-rays and said with a sad voice, “I am so sorry, but you have the knees of a 60-year-old.”
Those words seemed to floor me. How was that possible? How could I have damaged my knees just by laying some tile on a Saturday afternoon? I remember thinking maybe I shouldn’t have stayed at it so long, taken more frequent breaks.
She asked me if my knees bothered me much in my life. My answer was yes. They seemed to hurt, but the hurt I thought was from growing pains in my younger years as the doctor’s called it and then from activity and over exertion as I got older. She told me that I had arthritis, and mine was her worst case she had ever seen in anyone my age.
She sent me to my first rheumatologist who prescribed therapy and exercise to keep the muscles in my legs strong to prevent further joint damage. That rheumatologist diagnosed my arthritis as osteoarthritis or arthritis caused by wear and tear. They ran tests for rheumatoid conditions that came back negative, but no one connected all the dots until years later when NSAIDS and therapy failed to keep the joint damage from spreading to other areas of my body.
Another rheumatologist had a form that asked some very in-depth questions about things like if I had had ever had skin rashes or breakouts. I put down yes; my hands broke out in my teens with welting sores. I had to use corticoid creams to keep the rashes at a minimum. My fingers would burn and hurt with the rashes. I had problems with my scalp breaking out too. I never saw a doctor for these problems until my late 20s when I was a newspaper reporter. I developed pictures in the dark room almost everyday as part of my job, and he felt I was allergic to the dark room chemicals. He gave me cortisone shots ever three to four months to keep the breakouts to a minimum.
The rheumatologist also looked at other issues such as my constant joint and knee pain. I also had severely flat feet and now lots of pain in my ankles. My toes were also swollen and he said looked like sausages. He ran tests which revealed that inflammation levels, although not very high, were elevated, and I had a negative reading for rheumatoid factor. He felt confident enough to diagnose me with psoriatic arthritis. I was put on Embrel, but I developed infections and could not stay on the regime long enough to make much of a difference. I went to other doctors to find help, since that rheumatologist would not prescribe pain medications.
Doctors have never been able to find a cure or treatment to keep the pain at bay or stop the progression of the disease. Another doctor said I just had fibromyalgia and did not agree with PsA diagnoses at all. My current rheumatologist says I have both a systemic arthritis either PsA or ankylosing spondylitis and fibromyalgia. My case doesn’t fit neatly into any category. She has prescribed methotraxate, but chronic bronchitis keeps me from taken it regularly too. The joint damage is there and undeniable in all areas. I have had since had my knees replaced and need surgery on my left ankle and foot.
Now that I have told you the background behind my health journey, I can tell you that my diseases have changed my life dramatically. I can’t hike or garden anymore. I can’t walk for more than 10 to 15 minutes at a time without pain. I hurt everywhere: my hands, my neck, my back, my knees (still) and my ankles and feet. I had to retire as a school librarian. I dropped too many books and even overheads. My feet stayed bruised from dropping encyclopedias on them. I have a new normal as a stay-at-home mom of a beautiful daughter and part-time photographer when I can get out taking pictures with the help of my husband.
What I described before are the physical aspects of the diseases and how they limit me. I try hard not to let the diseases take an emotional toll on me. My emotions and feelings are mine. I will not let the diseases win in that area of my life.
I am not perfect at this everyday. I have plenty of pity parties, but I push myself to be creative and to write. I am so blessed that God gave me a love for words: reading and writing. I think this gift has been my salvation. He knew me from my beginnings. I don’t know why I had to suffer with this disease, but I praise God because He has been with me, loving me, and holding me through the pain.
I have had storms on two fronts in my life: a prior abusive marriage and my health. God, however, is my deliverer and my comforter. He has blessed me. I now have a wonderfully imperfect, stubborn husband, beautiful but typical, tween-aged daughter, three grown step children and three grand kids; a sweet, small manageable home; and great, small hometown with beautiful countryside. He has placed me in a harbor of safety and love.
This is my contribution to the October blog carnival edition of Patients for a Moment. This month’s topic is change. Be sure to go there to check out more personal stories about the impact of arthritis and other chronic diseases. The purpose of this blog carnival is to heighten awareness. Thanks.
I cannot even begin to imagine the type of pain you are feeling. And yet you keep a smile on your face and persevere. Faith works miracles and gives us strength, doesn’t it?
This is an interesting and informative post. I’m sorry you’ve faced so many challenges in your life, but I’m glad you found time to share some of your story on this blog. I’m sure many people will benefit from reading it. Thank you.