A Dedication to Diane Cappelli — Team: Kick AS Striders

Diane Cappelli was born in August of 1960 in NJ. It wasn’t until she was about 16 years old that she started to experience lower back pain. At that time, doctors were unsure why she was experiencing this pain but decided since they didn’t know why they would prescribed pain medications for her to deal with the pain.

Her diagnosis stayed status quo until about 15 years ago when one doctor who was familiar with AS, investigated her back pain. The results showed that while she was negative for HLA-B27, her SI joint started bi-lateral fusion. He recommended her to see a rheumatoid arthritis specialist. Her new doctor tried different treatments before settling on Humira. Even on Humira treatments, her SI joint fully fused and C2-C7 also fused. Her doctor eventually sent her to a pain specialist where they did a procedure that frozen her nerve endings in her neck. It was a painful procedure for her and it took a couple weeks to start feeling positive effects. For a couple of months, she would have less pain on a day to day basis. However, it wasn’t a permanent fix for her pain.

In addition to having AS, Diane was suffering from ulcerative colitis. When talking to her gastroenterologist, he told her that since she is already taking Humira, he could actually prescribe it once a week instead of twice a month treatments with AS. Even with the extra Humira treatments, she still was in a lot of pain on her bad days. She was a proud person and having to admit that she couldn’t do something was hard for her. She would talk about days going to the grocery store and walking to her car would take all the energy she had. Finally she admitted that she couldn’t do it without a lot of pain or needing to rest the remainder of the day so she got a handicap tag.

Diane wanted to keep informed and learn more about AS so she would join discussion boards and Facebook groups. Through one of these groups, she learned of Walk As One. At first she join someone else’s group (Team Maia’s Warriors) and in 2015 she decided to start her own group called Kick AS Striders. For her group, she really wanted to focus on awareness for a couple of reasons. The first reason was it took her years to be told what was actually going on with her. Not many people know about AS and even her doctors for years didn’t know about AS. The second reason was the handicap tag. She would be having lower pain day so she would go to Walmart and knowing she would be walking around the store, she would use the handicap tag. Well she has come back to notes about handicap spots are for handicap people only. They wouldn’t stick around to talk to her or see how much a simple trip to Walmart took out of her. She has also been vocal about people assuming just because someone has to take pain medications on a regular basis, that does not make always them a drug addict.

In the last couples years, she experienced hearing loss in both ears to the point of needing hearing aids. While it wasn’t proven, her doctor believed it could have been her AS. In Feb. of 2016 Diane had a sinus infection. She had to come off Humira and she tried to take antibiotics to clear the infection. The infection seemed to linger and never quite go away. She eventually lost her voice. Since oral antibiotics weren’t working, her doctors then tried IV antibiotics with a picc line. It caused her to have 3 blood clots due to the fact that she had an extra bone growth on her first rib. The doctors removed 2 of the 3 blood clots but she had to go on blood thinners. Her doctors put her on steroids to help her get a little bit of her voice back only to lose it again when she came off the steroids. She eventually had sinus surgery and got her voice back for a couple months. She continued to see ENT specialist and no solution seemed to present itself. She never would know when she would have a voice or not. At the end of 2017, she found a doctor who looked closer at her throat and found that there was something crusted on her vocals or they were starting to fuse due to AS. She was scheduled to have a more intensive sinus surgery in Feb. of 2018. She died in Jan. of 2018 from acute tracheo bronchitis.

Diane’s accomplishments: She got her pharmacy tech certification. She got her Associates in Arts degree in 2015. She would have graduated in 2018 with her bachelors in healthcare management. She had a son, Nick, who had her grandson Nicholas and her granddaughter Kayla, and her daughter Maria.

Diane’s most quoted saying: “One day at a time”

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Ricky was diagnosed with Ankylosing Spondylitis in 2010. Exactly one year later he created Endless Trax, his personal blog about AS, to document his experiences and help inspire others. Living by the motto “your condition may become you life, but that doesn't mean your life has to become your condition”; Ricky has strived to be a positive role model and advocate for people with Ankylosing Spondylitis.

3 Comments

  1. Mary Baer

    on May 1, 2018 at 9:34 am

    Reply

    She was the best friend to alot of people. Always a hard worker. I miss her so much.

  2. Mary-Anne Delaney

    on May 1, 2018 at 11:33 pm

    Reply

    Diane was a beautiful person and this is a beautiful, well written tribute. She is missed. ️️

  3. Christina Williams

    on May 4, 2018 at 6:48 pm

    Reply

    She was a very sweet lady I knew her through my ex in New Jersey .she was a proud person she never completed about being sick I was so happy to know her

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