“I just want you well again…’ (originally posted 5/19/2010 Lyme Life)
Lyme Disease, the master of all illness
I whisper these words to my (then) husband who was tossing & turning in his sleep. Before the words leave my lips, I feel a strong wave of uncertainty wash over me. I want to bury myself in his arms & pretend this life we’re living isn’t real. But it IS real, this is happening to us.
I’ve been stuck in this nightmare for almost three years and I feel as though I’ve been fighting all my young life. I am exhausted, beyond belief, but I keep pushing myself forward… or perhaps life keeps pushing me…
While you have all anxiously waited on an update, I spend day after day hoping the next will be better. Perhaps tomorrow I can write something positive? While anxious for that day to come, another one passes with no change in his condition. Some days I awaken to find things are unbelievably much worse.
It’s been hard to relive the experiences of the last several months but I feel a duty to share the horrors of Lyme disease and the dangers that exist with treatment. I believe it’s imperative to bring light to the tragedy that Lyme disease has created throughout our communities and the travesty created by the medical community who refuses to agree on the existence & treatment of late stage Lyme disease. I assure you that an afternoon caring for someone with chronic Lyme would convince anyone otherwise!
I almost lost him in April when we once again rushed to the ER with another complication. His fever spiked upward of 104 … Delusional with intermittent chills, sweats ravaged his body.
By the time we arrived at the hospital April 20th, he’d gone septic. Sepsis is a deadly condition which steals thousands of lives every year. Staff, Strepp & Yeast were all found growing in his bloodstream, the result of an infected chest port that had been placed under his skin 2 weeks prior.
Undeniably one of the worst things that could happen. A blood infection is always a possible risk when undergoing long term treatment with a PICC line. While aware of the dangers that come with having a central line & long-term antibiotic treatment, we have no choice. IV treatment as it is the only viable solution for eradicating late stage Lyme disease. Killing Lyme bacterium is a toxic process; each bacterium leaves behind a trail of toxic waste. Toxins build up in cells, tissues & joints causing painful inflammation & locked joints. This reaction, known as a herxheimer reaction, leaves patients substantially more ill during treatment. Miraculously we made it through… and on our 4th anniversary I laid by his side thinking about our uncertain future, alone, as he slept.
At 6:08AM my eyes snap open. It’s time for another round of medications, which I help administer every 6 hours through a PICC line (peripherally inserted central catheter).
This is now part of my daily routine, preparing & administering medications to help manage the symptoms of this horrible disease. This is the reality of our lives, right now (& for the last 12 months). I never imagined I would begin my thirties this way and honestly, when we said our wedding vows ‘for better or worse’ … I assumed that meant later, as in ‘old age,’ like when we have grand kids. But life & death, sickness vs. health, these are the things in life we simply can not predict.
The truth is I am a home nurse & the sole caregiver for my 30 year old husband sick with Lyme disease. He has been disabled for more than a year. Thankfully his health insurance is covered through my company, so we can not be denied or kicked off because he is a high risk/high cost patient.
At 27 he was seemingly a very healthy man, strong & independent. In his early 20’s he lived on a submarine & proudly served his country as a nuclear engineer. These days he can barely get out of bed by himself. His symptoms are at their worst first thing upon waking; every joint is stiff & painful, locked into place. He walks like an old man stooped over a cane for support. He speaks in fractured sentences & has no short term memory. He wears a patch that releases pain medication around the clock.
All of this takes quite a heavy toll mentally & emotionally: when your once young, strong body now betrays you with every step.
While my then husband took meds and slept for days on end, I would make calls to doctors and the insurance company and manage my business in between.
I have more knowledge about this disease than the average doctor but it has us running to the hospital with one set back after another. With no innate desire to understand disease or medicine, I’ve been forced into studying Lyme, learning about medications, treatment options & the politics that surround the health care industry. Despite my difficult patient, I remain at my post eternally hopeful that tomorrow will be the day we start to win the fight.
Underneath it all, the love of my life still remains. He is hidden beneath a veil of medications, hidden beneath the complexities & complications presented by his disease, and all I can do is patiently wait.
