I've Got A Secret That I've Been Holding For 8-Years - Now It's Time To Fight Back Even Harder
Updated: May 12, 2021
Many people live with an invisible illness, including me. I have been living with Tumor Necrosis Factor Receptor-Associated Periodic Syndrome (TRAPS) since its onset in 2013. This condition is characterized by recurrent episodes of fever. The disease has an estimated prevalence of one per million individuals. More than 1,000 people worldwide have been diagnosed with TRAPS. I also suffer from Adult Still's Disease. Frequently people with rare illnesses suffer in silence, being bounced around the healthcare system for years. Often people give up hope. I was almost there too, but something in me would not let me stop advocating for myself, probably because if I don't press myself to keep seeking help and urging them to test me when doctors are puzzled, I wouldn't have made it this far.
If you look at me, I look fine because it's an "invisible illness" and a solid will to succeed, for my toddler, for my family, but my test results and the pain in my body are frightening. For years, I've hidden the illness from many in fear of missed opportunities, but even with FMLA, my health has frequently defeated me, causing me to miss days of work, leading to the loss of at least 4 jobs and being overlooked for promotions. This is when I learned to hide my illness. Still, I pressed on. I've learned that I have to advocate for myself. Doctors have been stumped on how to help me for years, and some simply refer me back to my specialist at the Mayo Clinic, which is a distance from me and not easy to be seen.
Unfortunately, I've been on prednisone, a short-term medication, since 2013. It is the only medication that has been able to somewhat control my fevers, hives, joint pain, and swelling, which can happen anywhere in my body at any given time. However, the medicine has its side effects, which could include weakening your bones. Recent test results have reviewed that I have developed osteopenia, which is one step before osteoporosis. This can result in fractured bones.
Although I've hidden my illness, my personal struggles have further developed my character. From losing my dad to losing my health and grieving both of those unforeseeable and painful losses, it's all helped me further empathize with others and serve as an award-winning public servant over eight years.
Now, out of necessity, I am opening up about my up and down battle with these cruel diseases. My family has encouraged me to allow them to start a GoFundMe titled "April Fight TRAPS - Rare Disease" I also intend to film a documentary of the process with a use a portion of the money raised.
I've always been soft-spoken, polite, & shy to ask for help, but I desperately need your help. I've been praying steadfastly. I realized I have everything I need to try to help myself, bring awareness to Traps, and empower others, except the money. Insurance continues to deny it through pharmacy. They've pushed it through medical. Meaning a clinic or hospital would have to purchase the medication and then bill me, or I'd have to buy it. Here's my plan. I hope to have your support. I've been sick and without insurance and underinsured in the healthcare system before, so now I know to plan for rainy days. I hope to raise enough money for months of the medication. If I can raise enough money, the local clinic will feel confident in the Buy & Bill process, knowing I can pay my portion of the bill. Eventually, I will max out my out-of-pocket, so I'll have the medication covered for the year. I will then set aside a portion as emergency funds for the prescription (if I lose my job and insurance). During this process, I plan to film a documentary of my journey to help encourage the small population affected by TRAPS and the large population of people who suffer in silence from an invisible illness, therefore bringing purpose to my pain.
When the idea of the documentary came, I didn't know I'd have an issue getting this covered by insurance. I just wanted to inspire other at-risk people who are currently feeling stuck and living in a bubble due to the widespread presence of Covid.
Please watch this video and consider supporting the GoFundMe, "Help My Sister April Fight TRAPS - Rare Disease." Direct link - https://bit.ly/3uCIdlC.
The following poem was written by a friend concerning my secret battle with this debilitating disease.
"We are not as we appear.
Our Flesh an optical illusion
When the struggle lies inside.
We hide behind a Mask.
Forever Suppressing our truth.
We have come to live in a society that lives our lives around social media. We have become programmed only to show our hype reel of life to the public. All-knowing the self struggle that sometimes lives inside of us.
We hide away by pretty pictures.
We put up a front to appeal to what we think society wants to see. All the while suppressing ourselves.
From who we are meant to be. Living a lie.
We have Made ourselves powerless behind the screen.
It's time to take our power back. To be transparent.
To use our voices. The optical illusion is no more."
- S A M A N T H A L E V I
Watch April Short-story