When Life Gives you Lyme, Make “Lyme-Aid”

“When life hands you lemons, make lemonade”  is a proverbial phrase used to encourage optimism and a positive can-do attitude in the face of adversity or misfortune. Lemons suggest sourness or difficulty in life; making lemonade is turning them into something positive or desirable. (Thanks Wikipedia for that perfect definition.)

We’ve all heard that age-old adage, right?  But when life brought me and my family Lyme, I didn’t think positive, I didn’t adopt a can-do attitude. I basically FREAKED OUT!!!!  It wasn’t just a one day freak-out either! The proper diagnosis literally took almost two decades to receive.

I was the first one.  But not the first one to know. 

At the end of my freshman year in college I basically collapsed with a severe case of Mononucleosis. But while most recover from mono in a few weeks, I was desperately ill, and my life has never been the same since. The years following brought me several diagnoses, such as, Epstein-barr Virus, Chronic Fatigue Syndrome, ADHD, Chronic Migraine, Interstitial Cystitis, Endometriosis, Fibromyalgia and based on a positive blood test … “a touch of Lyme Disease”.

At the time, I had no idea that a “touch of Lyme”, dismissed and left untreated, could lead to a full-blown chronic Lyme case.  The more devastating fact was that in the absence of any treatment, I eventually passed Lyme Disease to my daughters in utero.

In the 90’s, doctors didn’t know a whole lot about Lyme and it’s pernicious effect on it’s hosts. So, when I collapsed in 1991, my doctor did not treat the infection thinking it would “go away eventually”. 

It did not.  

There’s more.

I now believe that the Mononucleosis I had back in college to have been a “co-infection” of Lyme Disease.  By that I mean that Mono hitched a ride with the Lyme infection. There’s a distinct possibility that most of the ailments to plague me over the years have been linked to Lyme or simply been misdiagnosed Lyme symptoms.

As the years passed, I married an amazing man and we had two beautiful daughters. The “freak outs” (a.k.a. emotional meltdowns) began when our oldest daughter was diagnosed with … wait for it … Mononucleosis … in second grade!  SECOND GRADE!

Had she been kissing young men behind the swings?? NO!! We would find out by her third grade year that she had full-blown Lyme.  I was officially diagnosed next.

We both started treatment. We drove 10 hours and four states away to the closest Lyme-Literate doctor (called LLMD’s in the Lyme community) who saw pediatric cases. 

Then my youngest, at four years old, came to me, “Mommy I can’t see, everything is falling off” as she reached out in a motion like things falling over a waterfall from her line of sight.  My gut sank. She was diagnosed next. My world stopped.

It was like a death. That’s all I can say about that particular “freak out”. A death.

I struggled through guilt, having passed this awful, confusing, complex, and controversial disease to my baby girls. I was utterly terrified, knowing that their lives could mimic my years of struggle and pain. I struggled with anger….no… more like rage!

How could my loving Father, my God of all healing let this happen to my very heart – my daughters. He knew I was struggling to handle it in my own life. I struggled with despair. How could I possibly help my daughters when I couldn’t even help myself. I felt trapped. Alone. 

Then my husband got his diagnosis. 

A whole family. Weird. Unheard of. Unbelievable and unbelieved.   Unbelieved by doctors and even some close to us. A VERY challenging situation to say the least.

My sweet husband was one of those questioning our diagnosis. He had a rightfully hard time going along on this new twist in our journey. But being a natural skeptic, researcher, and deep analytical thinker, he needed more facts and order. This was extremely hard to come by at that time due to our emotionally charged and explosive home. (Mostly because of Mommy.) 

Nevertheless, over the years we have done an enormous amount of research, which you can imagine. We’ve gained much needed knowledge and resources to help us fight this devastating disease. So life gave us LYME. How in the world could we possibly make “LYME-ADE”???

One tiny step at a time. 

Bianca’s diagnosis came ten years ago. So over the past ten years we have made our LIMEADE!!!!   Did you see the subtle change in spelling?

Through God’s almighty power and love He has given our family, in SO MANY forms, the strength, patience, hope and endurance to change that ONE letter.

You see, “Lyme” is not really part of our vocabulary any more. EVEN THOUGH we have not completely overcome its effects in our lives, it no longer holds us to a debilitating and paralyzing LABEL. 

From LYME to LIMEADE.

The “sourness” we have known through battling Lyme disease has been sweetened by the deep and courageous desire to heal and find wellness.   The journey from despair to embracing healing is too much for this intro Lyme-journey post, but you’ll hear more about the hours upon hours of treatments, research, and resources we have gathered over the years.

But know that today, you can find that same healing and wellness dear Warrior!!!

DON’T give up!

Hold onto hope and that sliver of courage that is still a part of YOU.

I invite you to stay the course with us, “The Russo 4”, as we continue our journey towards healing and wellness. 

Josh, Pam, Bianca,  and Greta Russo