As someone living with chronic illness, I’ve learned that the only way to make it through each minute — each passing day — is mindset and hope. Hope that with every pill I take, every new doctor’s appointment, every treatment, there is still light at the end of the tunnel. Hope that one day I will wake up and the nightmare I’ve been living will finally be over, and I will be a survivor… no longer just a patient.

Most days are up days, but the down days are real. Days when hope feels depleted and the tears come without warning. Lyme and its coinfections show no mercy when they take hold of your body. They burrow into every nook and cranny, finding new places to live, leaving destruction in their wake.

The whirlwind of treatment over the past years has taken every ounce of patience and strength I have. Some days feel like victories; others feel overwhelming just trying to absorb and understand everything doctors have said. I’m finally at a point where I can take a deep breath and start learning — truly learning — what every medication is for, reviewing the tests, the procedures, the reality of what has happened to my body.

I think it’s finally time to understand the damage that may never fully recover.

Out of the countless pills I’ve swallowed over the years, this may be the hardest one to take.

I was recently referred to a new Lyme specialist who has been in practice for more than 30 years. I’m going to take the plunge and make the appointment so he can help me understand what remission truly means for me. Understanding what the “new me” looks like may be harder than I’m prepared for.

There may be no real way to repair some of the damage — changes in my brain, including swelling and shrinkage, injury to my frontal lobe and brainstem, nerve damage in my right foot and leg and my left side, along with damage to my left eye, eye socket, and heart. These are not things anyone hopes to hear, but sometimes the hard truths are simply that — hard.

We’ll continue to evaluate the rest, and maybe there is still hope for improvement in some areas.

If only doctors had listened sooner… maybe things would be different. With every passing day it took to find answers, the disease claimed more of me. More than three years for it to permanently change my world. If only the tests were more accurate. How is it possible that in this day and age we have testing that can miss so many cases? We can accomplish incredible things as a society, yet so many patients are still left unseen and unheard.

To those who said I was “crazy” — maybe it was never me who needed to step back.

If I could shout from every rooftop that Lyme is everywhere, I would. But what does that mean if people still won’t listen?

I once read a quote: “You don’t get it until you get it.” Nothing could be more true. Until you or someone you love fights for their health… drains their savings… begs to be heard by people who are supposed to help… it’s easy to think it’s not a real problem.

Take it from me — it is.

So I will take a deep breath and make the appointment I truly don’t want to make. Because how can we move forward and heal if we live in denial?

I do believe there is a reason for everything, even on the days I question what that reason could possibly be. I know, deep down, that this journey was given to me so I could help others not have to walk it alone.

I guess someone believed I was stronger than I ever believed I could be.

Be safe. 💚