While sorting through my later mother’s things, I came across a small notebook.  This notebook dates back to 1992 when she first started recording her symptoms.  There were questions she had noted for her doctors and reminders of appointments and prescription pick-ups.  The first few pages are undated, but judging by the later pages, I would say they were written in late January ’92 or early February.

The first doctor she lists is Dr. Fitzpatrick, who she commonly referred to as Fitz.  There is a note about having a severe headache since October 14, 1991.  I recall growing up there were people who doubted her having a headache every day for over 25 years, but these people didn’t live with her.  They weren’t a witness to it.  They didn’t talk to her every day.

She describes a pain in her knees and thighs since January 1, 1992.  Apparently she was told, judging by the notes, that she was in a later stage of Lyme.  She expressed a fear that she would not be cured.  There is a note that appears throughout the first couple years of notes that she “can’t cry.”  She states that she did not have a rash.  The scary thing about Lyme is sometimes, you don’t see the rash.  I have had Lyme three times to the best of my recollection.  Once I did have a rash, but the other two times– no rash.  Nowadays, you’d be lucky to find a doctor that would treat you without a rash, and even more so without the actual tick sent out for testing.

Other notes she made regarding her symptoms… “fatigue and dizziness, weakness in beginning.”  “In-home intravenous antibiotics for three months.”  “Scheduled spinal tap at Brick Hospital.”  “(Doctor) agrees that it is most likely Lyme.”  Even then, there was no definitive answer for her.

A nurse came to the house frequently while she was on the IV antibiotics.  Mom wore what looked like a clear canister around her waist with tubes protruding from her arm, injecting her daily dose of antibiotics in a lame attempt to cure her.  It didn’t work.  At one point, she was put on Rocephin, another antibiotic.  Or perhaps that was the IV antibiotic– the notes become a little confusing as her memory had begun to fade.

She noted how she was following doctor’s orders.  “Drinking lots of fluids, lying on couch, resting.”  Her temperature was fluctuating between 96.9 and 98.4.  Mom and I always had a normally low temperature, in the 97’s, as opposed to the usual of 98–something.

The first note that is dated is February 7th.