My Patient Story
Congressional District: KS03
Chronic Pain, Immune Disease, Rare Disease
Issues and Challenges
Charlene has encountered: Rare / Underserved Disease, Invisible Illness, Job Insecurity / Loss, Step-Therapy / Fail First
Imagine a sunshine filled day at the beach, a cool breeze, scattered white fluffy clouds in the sky, warm sand under your feet, and the sound of gentle waves of the ocean running up and down the shoreline. I enjoy my time and life carefully and happily building my sand castle. Serene, isn’t it? Then suddenly a crash of thunder and a flash of lightning tears across the skies with angry dark clouds engulfing the sun. Heavy rains start pouring while the winds sweep the ocean waves higher and higher to crash upon the beach destroying my sand castle, my life.
Who am I? I am a daughter, a sister, an aunt, a guardian, a patient, an advocate, a scientist, a caretaker, a friend, and so many more things. I wear many faces and hats throughout my life. Most importantly, I am a whole living person seeking to be treated with respect and kindness especially when it comes to my health and well-being.
When I was in my late 20s, I was at work when I suddenly had this sharp pain in my back that went down my leg. I had no idea what had brought it on. It was so painful that I had to limp for the rest of the day at work because I could not leave to go home yet without finishing my duties.
For a couple months, I took over the counter pain medicines, used heat and cold packs, pain creams, and pretty much anything I could find at Wal-Mart to dull the pain enough to get out of bed. There were many days where I could not get out of bed and would have to call in late to work or call in sick all together. On the days I did go to work seemingly walking like “normal”, people would always say to me “you look so good”, while I’m internally wincing with breakthrough pain trying to keep a smiling face.
About 3 months go by, I finally get in to see my doctor who decided to admit me to the hospital to control the pain better and to run tests. After 4 days in the hospital, there were no conclusive answers. I had some form of arthritis but didn’t match up to anything in the medical books. What to do now? The default answer was to take steroids by mouth and direct injections into my back, pain medications, and anti-inflammatory medicines to just control the symptoms. They did not help. Rather I had to face the water retention, dizziness, and stomach pains from these medicines while taking other medicines to counter the side effects. Every day at work or when meeting friends and family, they would ask how I was and would continue to say “but you look so good”. This went on for a year until I switched doctors.
In my early 30s, I switched doctors since my former one just wasn’t doing much to help my pain. By this time, I had gone part time at work because it was painful to walk. I needed to walk with a cane or sometimes have the security guards or colleagues who cared help wheel me in a wheelchair to and from my car at work too. This is something that was not supposed to have happened. By this time though, there was a new medicine on the market, Simponi, which my new doctor recommended that I try since what I was taking did nothing for me. I was all for it until my insurance said no. According to them, I had to try all of these older established medicines on their formularies before I could get any approval for the newer one which my doctor thought would be the best thing for me. Ridiculous!
Let me lay out the parade of medicines I had to take before I could get to Simponi. I tried Humira for 6 months. Next was Enbrel for 1 year. Then Remicade for about 4 months which I ended early because I developed hives from it. All of these failed to relieve my pain and my arthritis continued to progress in addition to taking steroids and other pain relievers at the same time just to get out of bed. Almost 2 years had lapsed before getting approval for Simponi, which failed after 6 months as well. On top of that, these medicines were expensive. Thankfully I had family and financial assistance to help with co-payments. My ability to work had been cut in half to a point where I was considering disability.
I questioned many things during this ordeal. What went wrong? Why is this happening? I felt like my care was dictated by what insurance wanted based on a cookie cutter formulary for certain types of arthritis, not my unusual one, and not what my doctor and I thought was right for me. I am not standard. A lot of people are not standard. With all the waiting and jumping through these loops, my physical health was severely impacted dealing with the long term side effects like osteoporosis, increasing pain, and needing a cane/wheelchair to get around in my 30s.
I struggled with people not understanding or recognizing how debilitating arthritis can be. People would keep saying “you look so normal” when I felt horrible. Someone once said to me that people who are dealt these diseases are stronger and able to handle them better than those who don’t have them. Is that true? I continue to put on my colorful masquerade masks of “happy” and keep on going, but it hurts in more ways than one. To this day, it still hurts to think about it.
In the end, we need to come together as a team to make decisions together treating patients as whole people rather than by cookie cutter regimens of step-therapy and formularies. I hope that we all will find our tribe, our supporters, our healthcare workers who understand us, feel what we feel, and help us find ways for a better life to rebuild the sand castles that were once destroyed by the onslaught of arthritis and other chronic diseases.
My Motivation and Inspiration
My motivation and inspiration come from many places and people but mostly my family, friends (online and offline), hospital family, fellow patient advocates, and people who have given me support throughout my life journey.
I strive to live each day with love, hope, courage, determination, forgiveness, and no regrets. I envision a better future for everyone through community togetherness, kindness, and knowledge that builds upon each other for prosperity and happiness for all to experience.