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Writer's picturemisskelly77

LIVING WITH A CHRONIC ILLNESS

Updated: May 20, 2021

Lyme Disease. Babesiosis. Bartonella. I will never forget how I felt when I finally received my diagnosis. Such relief...we finally knew what had been ravaging my body! And terror...there was no cure. Not for someone who had already been ill for so long.


Lyme Disease is such an insidious illness. When I first became ill, it was still considered an East Coast illness, so I went misdiagnosed for many years. Even now many people still struggle to be diagnosed. The tests are notoriously inaccurate and expensive, and many doctors don't know what to look for.

The timeline of my illness.

It took many years to piece together what had happened to me, and the reasons I was so ill. By the time we knew what to do, a cure was no longer possible.

I became ill after a church youth ministry trip to Catalina Island off the coast of California. Although I never saw the tick that bit me, it was (in hindsight) clear that I came down with a classic case of Lyme Disease. I had fevers, headaches, body and joint pain, air hunger and weight loss. Unfortunately, this was the mid 1990's in California and I was only 17. Lyme Disease was still an East Coast problem, so it was never even considered. I underwent more tests than I could count, including a lumbar puncture, but was never diagnosed. After a couple of months I started to feel better, so I put it behind me, unaware that it would never really be gone.


Strange medical problems kept appearing.

I spent my teens and early 20's juggling several seemingly unrelated medical issues. I struggled with ovarian cysts and endometriosis. I started having chest pain and was diagnosed with carditis. I was a Park Ranger Aide and a Firefighter/EMT and I had carditis at 21? The connection to Lyme Carditis was not made.


I became ill again in my late 20's while living in New York State.

It was just like the illness that started this all, and because of that, Lyme Disease was, again, never considered.

My doctors believe that I was probably bitten by another tick at this time, reintroducing Lyme Disease into my bloodstream. Once again, after a couple of months, I began to improve. My immune system was doing it's job and fighting to keep me healthy.

Then, disaster struck.

It was now 2007. 12 years after my illness first began. I had an ovarian cyst rupture and hemorrhage, requiring emergency surgery. During my stay in the hospital, I developed a massive kidney infection. My immune system became overwhelmed. I worsened rapidly. I was feverish, in pain constantly. I developed huge muscle twitches. It became harder for me to remember things. I struggled to read. I struggled to even speak. My carditis returned and I developed a cardiac arrhythmia. It was terrifying. After over a year of failing health, when I was at the point where I could not work and had become bedridden, I finally received my diagnosis. Lyme Disease. And Babesiosis. And Bartonella. I finally had something to point to. But my journey had just begun.


to be continued...

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