You May See a Scary Diagnosis, but I See Hope
A new diagnosis, especially a life-altering or lifelong one can be a petrifying thing for most. But for me, I’ve gotten use to this whole “being sick” thing.
It all started with Lyme disease. I was bitten in 2011 by a tiny, blood-sucking devil tick and have struggled with chronic Lyme disease for the past six years. The worst part has been bouncing from doctor to doctor and medication to medication to no avail all while the Lyme bacteria has been ravaging my body.
During the past few years, Lyme has caused my entire body and life to change. Let me be clear: I don’t write to gain sympathy or for people to say “I’m so sorry.” I write about Lyme disease to gain understanding, to raise awareness and to hopefully and ultimately help others prevent this terrible disease.
This harsh reality is imaginable unless it actually happens to you, not to mention the scrutiny that many of us “Lymies” go through. Healing from chronic Lyme is not linear, and, most of the time, it’s an “invisible illness.” I’ve found that it’s very hard for the average, healthy person to even imagine all of the symptoms or immense pain you can be in due to this horrendous disease. I look so young and healthy on the outside, but the truth is, my inflammation levels are through the roof, and I’m experiencing 20 plus symptoms a day.
This past year has been the worst year for me. It seemed like my symptoms morphed into something more serious. I developed postural orthostatic tachycardia syndrome (POTS) a year ago and was put on heart medications. My inflammation levels keep increasing despite anti-inflammatories. I went from working 45 to 60 hours a week (for two jobs) to being bedridden most days and housebound the rest. My pain went from moderate to severe then it became constant and debilitating. I was gradually getting more sick despite all of the medications and treatments I was doing.
I knew something was wrong. I knew that this was more than chronic Lyme.
I saw my primary care doctor and advocated for myself. I told him I absolutely knew there was something else contributing to my symptoms. Surprisingly, my doctor believed me and he agreed. Hallelujah! We might actually get to the bottom of this!
He did X-rays and blood work. Then I got a new concrete diagnosis: psoriatic arthritis (PsA). For those of you not familiar with PsA, it’s a serious, autoimmune/chronic inflammatory condition that can cause significant pain and disability.
My doctor said I carried a gene for PsA, and it was activated due to my weakened immune system because of Lyme disease. I was sent to a specialist to confirm, and yes, I finally had two doctors who could agree with each other. Obviously, being diagnosed with PsA can be terrifying. There may not be a cure for this autoimmune disease, but there are many options for management and prevention from further damage.
Immunosuppressants and chemo therapy drugs are serious medications and can be quite scary to most. But in this situation, I see hope. Hope of finding relief and being put on medications that actually help. Hope for a little more compassion and understanding from doctors and loved ones. Hope for a cure one day. Hope of getting my life back.
So despite this scary diagnosis, whatever the future holds, I’m ready for it and I’m hopeful!
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