Part Three: Living with Chronic Lyme Disease: a long and difficult Journey

Part Three: My Symptoms Increase and More Challenges Ensue

Although my symptoms and complaints increased they were often discounted by my doctors or worse, were attributed to anxiety, or even being a hypochondriac. This is not uncommon to those who have invisible and undiagnosed illnesses. Lyme often produces strange, inexplicable symptoms that come and go and leave doctors perplexed. What cannot be explained is often attributed to having a psychological basis.

There was good reason for my concerns, as well as the anxiety that accompanied them. If inflammation is enough to be systemic, the brain will also experience inflammation and cause anxiety. I was more than willing to to seek psych support as I knew that I needed help, though I didn't understand, nor did my doctors that many of my issues really could not be helped with counseling. My symptoms still weren't being recognized as being connected to the serious infection raging in my body and brain.

I learned in my nursing school days that the name of any bodily organ with “itis” at the end means “inflammation of” and my list of "seemingly acute illnesses" ending in “itis” grew longer through my twenties and then into my thirties. Along with my many “itises” I also went on to have heart irregularity that stymied cardiac specialists. Doctors noted that this irregularity was fortunately benign, not life threatening. This was just yet another of many documented and seemingly random bizarre symptoms.  I later learned that Lyme is a disease that causes inflammation as well as heart irregularity, which for some can, indeed, be life threatening.

When I became pregnant at age thirty-five, my symptoms finally got the attention they deserved from medical specialists. Pregnancy can further tax a body that is already stressed with an underlying disease process, causing symptoms to worsen.  For me, it was a time of fevers, joint instability, allergic reactions, and skin break outs as never seen before.

It should not surprise me that my first serious diagnosis, albeit a false one, came right after I delivered my first child. Serious back and joint issues ensued and with them more abnormal lab results. Systemic Lupus, an autoimmune disease, was the suspected cause.

I couldn't lift my baby without serious pain and my neighbor had to help me lift her in and out of her car seat when I went back to work. Breast feeding did not go well.  My daughter was colicky and had on-going ear infections.  Pink liquid bubblegum Amoxicillin seemed to be a daily supplement to the usual infant feeding regimen.  I was not a glowing mother, nor was my baby easily contented. Twenty-one years later we would learn that she had been born with Congenital Lyme Disease. Lyme we learned could be passed from an infected mother to her child in utero. We didn't realize that our baby's health issues as well as mine were Lyme Disease induced. We just knew that life was a lot harder and we didn't seem to be like other young parents with their first-born children.

A colicky baby is enough to stress any parent, new or experienced, and we struggled to cope.  Being too tired or too stressed, became our way of life and by the time she was off to kindergarten, we had mostly acclimated to our new "norm" and our symptoms seemed to have abated a bit.  My diagnosis of Systemic Lupus was rescinded by my doctors, though Chronic Lyme Disease had yet to be diagnosed.

I had surgery to repair a badly damaged ligament in my left ankle and still wore ankle splints on both ankles under my socks, to prevent my ankles from turning at the slightest irregularity in the ground surface. I didn't know it then, but I was not only experiencing joint instability problems but neurological issues as well.  My proprioception was altered and I didn't know exactly where my feet were in relation to the ground.  I exchanged beauty for function by wearing “sensible, broad-based flat shoes", that would not easily turn, keeping me safer and preventing further injury! My husband and I were altering our dreams, and adjusting to the new realities of what we thought were random health problems for both me and my child. (to be continued.)

The illustration above is done by Hannah McMillen and the figure drawing by Sarah Kate McMillen.

(*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering their illnesses.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give-up on living their life to the fullest extent possible.)