The Faces Of Ankylosing Spondylitis

First of all – this group has been so inspiring to me.  I have read almost all of the stories, because before a year ago – I had never heard of Ankylosing Spondylitis. It is amazing to me how far reaching it is – with patients from all around the world on this page.

I am now 50 years old. I have had an official Ankylosing Spondylitis diagnosis for almost one year – but I have had back problems since I was 15.  I was treated for years with muscle relaxants and painkillers, and in the early days I was told to sleep on the floor.

During the last ten years things progressed aggressively.  I had more problems with pain in my lower back, couldn’t get out of chairs, ended up crawling on the floor at home when I couldn’t walk. I ended up with an ulcer because I had taken so much naproxen and ibuprofen. I had a number of cortisone epidurals in my s.i. joints over the years, along with in my shoulders and my hip.  I ended up having back fusion surgery in 2012 – fusing S1-L5.  Nothing healed properly.  I went through a much extended period of physical therapy – and when that didn’t work – they gave me a tens unit – which did help in the short term.  I still wasn’t healing properly – and I had a lot of pain 9 months after surgery.

In March of 2013 (after many absences from work because of back problems), I took advantage of FMLA and decided to find out what was wrong with me. I went back to my surgeon and I had more MRI’s. I went back to my Pain Management doctor as well, and both concluded that I should see a Rheumatologist immediately.  I saw the Rheumatologist within a week.  At first the Rheumatologist claimed that Orthopedic Surgeons and Pain Management doctors usually send their patients to him – when they can’t figure out what is going on.  Essentially, a last ditch effort before the end of the road.  He ordered what seemed to be a million blood tests: Lyme disease, Hepatitis, and Vitamin Levels etc.… It came back with the results that I was shocked by – I carry the HLA-B27 gene. Then he said that I have full-blown Ankylosing Spondylitis.   He also said that I was about 10 years late in my diagnosis and I was extremely inflamed.  The x-rays he took also indicated that I have damage in my feet and in my hands.  He prescribed Methotrexate immediately, and we filled out the paperwork for Remicade infusions with my insurance company. I have been on Remicade infusions every 6 weeks since October 2013.  We are in the process of moving that up to every 4 weeks. I am also on Neurontin, Cymbalta, Metaxalone, Prednisone (only for flares), Percocet (for uncontrollable pain), and still taking Methotrexate, and folic acid to counteract the Methotrexate side effects.  Because I live in Wisconsin- where it is winter with no sun almost 6 months a year– we also found that I had a severe Vitamin D deficiency, which can cause some added pain.  It took a very long time to get that level to normal.

I was able to go on Income Continuation and Long Term Disability last year.  My doctors all agreed that I had to get my health under control, and that going back to work in advertising – was not going to help my physical situation. I think I slept my first two weeks off.  I am working on my Social Security Disability claim – and I finally hired a lawyer to take over my case.

My life has changed enormously.  I was used to going out to all of the concerts and events, staying out late, attending film festivals, and all of museum openings.  Now I am happy to stay up to watch the 10pm news.  I also used to wear high heels every day of my life…because I am 4’9” tall.  I now wear comfortable shoes – and have found that Alegria shoes provide enough support – and they have some funky styles to make up for their sensibility. And I can shop for them online!

I have taken advantage of my time by working on my creative talents.  I’ve taken up knitting, sewing, and painting.  I am attending a therapeutic water aerobics class with a bunch of women who are many years my senior and they can kick my butt! I have attended a yoga class for backs that is taught by a physical therapist.  My favorite physical activity is biking – which sounds strange – but it works.  I can’t walk 5 miles without pain but I can bike 30 miles!  I have a hybrid bike with touring handlebars – and a big cushiony seat.  I can’t wait for my first bike ride this season.

I have to say that my awesome friends and family have come to my rescue many times.  My boyfriend of 6 years is very patient with me and very encouraging.  My friends have been there for me to help with cleaning, and yard work etc. Always with a joke and a smile. My 71-year-old mother shoveled my driveway out this winter and she was able to clean my windows as well.  Mom calls daily to check in on me – and to find out the “scoop”. My sisters have both come forward to help me with different projects – and encouragement. And my 14-year-old nephew has mowed my lawn and helped me with lifting, and even getting out of a chair, when I have been down and out.  I can’t imagine what it would be like not to have a support network.   Other friends check in on me to go out to lunch and shopping.  I haven’t been forgotten – which was my big fear.

My boyfriend and I love to travel. We usually go to Europe every fall on some type of adventure.  Last fall in France, Germany and London – we rented bicycles, and used public transportation to see the sites.  Some mornings we would get a later start out – because I need more rest – other days we come back to the hotel early.  The airlines have been great with letting us board early, and understanding my complications.  I always check in with my doctors before I leave to find out what they want me to do in case of a flare etc.  I have had to learn to pack lightly – and not to carry a large purse (and practical shoes!).  It is just as easy to lie in bed and take a rest in London as it is in Wisconsin – and you get to look out the window and see Big Ben!  What I have found is that being polite and explaining that you have a health problem and you need help goes a long way in any country.

Thanks –

Laurie

Milwaukee, Wisconsin United States of America

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