Turning Lyme in to Lymeade

I had my finger in my ear, again.  There was a bump in my right ear that just wouldn't go away.  It had been there a few days.  My Grandma finally said to me "Why do you have your finger in your ear all the time?"

I said "There's a bump in there and I don't know what it is."

She peered into my ear and declared "It is a tick."  I promptly started crying hysterically and yelled "GET IT OUT GET IT OUT GET IT OUT!!!"  I was only 5 years old and emotional regulation wasn't so much the strong point.

I heard her sigh and say "I shouldn't have told you until I took it out."

Grandma found a hair pin and dug it out.  I'm a little fuzzy on the details on how exactly she did that.  I do recall watching the fat tick body sizzle in the frying pan, where she dropped it once it was out of my ear.  You can kill ticks three ways: pop them, burn them or drown them.  Popping them was super gross, so burning or flushing them down the toilet was the preferred method of execution.

And we carried on.  I played outside with my cousins, went to preschool, colored in my coloring books; all the normal 5 year old things.

Fast forward approximately 36 years.  I'm sitting in my doctor's office as she picks up the sheaf of papers that contained the lab results from my blood test.  I held up my hand to show crossed fingers.  She asked "Which way are you hoping for?"  I just shrugged, because really I didn't know.

My knees, wrists and lower back had been sore and aching.  I'd initially chalked up the sore knees and back to unsupportive shoes and being out of shape.  Then my wrists started to hurt. Initially the symptoms pointed towards osteoarthritis.  I'm only 41 years old, so that was tough to wrap my brain around.  What would life look like when I was 60?

X-rays confirmed that I did have some arthritis in my lower back, but nothing was found in me knees or wrists.  My pain was also not decreasing with standard arthritis treatments.  In fact, the pain was increasing to the point where I was taking 3,000 mg of Tylenol in order to sleep.  I'd had chronic fatigue since middle school, making my daily functioning a struggle.  The increased levels of fatigue were making me feel pretty desperate.

My doctor said, "I am interpreting these test results as positive for Lyme Disease."

Well, then.

My brother and I around 1986
I probably had Lyme Disease.

"What is your percent confidence that is is Lyme?" I queried, "85 or 90%?"

She nodded.  "Yeah, 90%."

Lyme is a tricky disease, it hides in the body and sometimes the immune system isn't able to detect it.  The blood tests look for antibodies known to be formed in response to the presence of the Lyme bacteria (Borrelia).  Having antibodies present means you have been exposed to the bacteria.  I had the symptoms (fatigue and joint point) and a lot of the antibodies.  I've probably had it since I was a little girl, at least 20 years but probably more.

Given some time to think about it, I am relieved.  Arthritis is a degenerative disease.  You can slow the progression but there is no cure.  With Lyme, there is a possibility of a cure.  Or at least beating the disease down to the point where I experience minimal symptoms.  

I am interested to see what life would be like without fatigue.  And I certainly could go without joint pain.  

My doctor is pretty kick ass.  And she says that I am "tough as brass," so we both expect treatment to go well.  It is a long haul, usually 6 months to 2 years, but I can do that.  Two years are going to pass no matter what, so I might as well be doing something to improve the quality of my life.  

I spent some time wondering "why me?" which is generally a path to misery, so I put the brakes on that thought process.  Really, a better question is "why not me?"  I spent every summer of my childhood in northern Minnesota.  Ticks were everywhere and I had one in my ear for days.  And that was only the first tick I remember having.  

I'm feeling a bit emotionally wobbly because this is not the first major diagnosis I've gotten in my life (you can read a bit about that here.  I promise I don't complain).  I am tad tired of constantly being handed new obstacles.  But I am a fighter and I've got plans to be doing things for another 4 or 5 decades.  

And have I mentioned that I am really, really, really grateful that I don't have arthritis? 

When life hands you Lyme, you make Lymeade.  

Here's to going forward with gratitude.