My name is Lynne McDonald and I have Ankylosing Spondylitis.
I have had symptoms since I was 19, diagnosed officially when I was 49, and am now 63. It has been a long, trying battle of “me” against my body but I have fought on. I have tried numerous rheumatologists with all the same answer; drugs, see which ones work.
None did. They made me feel worse.
When they brought up the subject of Enbrel, I headed for the door in full fleeting mode due to reported side effects of certain blood cancers, which have a high occurrence in my family.
I was even told by one rheumatologist not to come back because I wouldn’t do the treatment she wanted to “try” on me. All I said was “See ya” and out the door I went and did not look back!
I knew at that time, rheumatologists were not for me.
Over the years I was also involved in a few studies at the National Institute of Health, one of which was a genetic study that included my daughter, son and sister.
They participated by giving a sample of their DNA. My husband and I would drive down to Bethesda, MD twice a year. It was an all day trip for us but was well worth it if it helped the doctors learn more about the cause and treatment of AS.
After having my two children, and a husband that was an active jogger, walking came into my life for a reason. I try to walk 4 miles a day on my treadmill or outside, weather permitting. It makes me feel better inside and out.
My routine is usually 3 miles in the morning and one mile after lunch (mainly to work off the piece of homemade cake I had for dessert).
My Fitbit step counter has become a very important part of my walking regimen. It keeps me on task every day. I also do a full set of stretches before I start my day.
I maintain this routine every day but Saturday. I take that day off to do my other obsessions, quilting, cross stitch, knitting, drawing, digitizing designs for my embroidery machine, sewing, crafting . . . .You must get the picture by now!
At this stage of my life, and AS, my neck is totally fused. As a result, I handed in my car keys about 15 years ago. My spine is also fused and although I have osteoporosis and other diagnosed issues, I can’t say enough to all those afflicted with AS that the best thing one could do is to keep moving.
Get up and dance, walk up a flight of stairs, take a walk around the block, just keep moving! My mom had a saying that nothing can hit a moving target, so I keep on moving and hopefully will for a many more years to come.
This is my abridged version of my 44 years of living with AS. Do I have bad days? You bet I do, just like anyone who suffers with a chronic disease. Does what I do work for me?
Right now it seems to be, as far as I am concerned. Ask any Rheumatologist, they might say something different. Keeping this in mind, I do not encourage anyone to read this story and flush their prescribed meds and do what I have done for most of my life, which is basically not much in the way of prescribed treatment.
I have made my decisions and I have to live with the outcome.
Would the damage to my spine have been less if from the beginning I had done what the doctors wanted me to do? Maybe, but the risk of getting something far worse than AS outweighed the pain I was feeling from AS.
Now with that said, it’s time for me to get up and move, then have some cake!
Lynne McDonald is walking with The Walking Spondies in 2017. Every step we take matters!
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