Caregivers Corner

What A Long, Strange Trip It’s Been

20180714_135743 Lorraine Hart, 2018 

 

   I celebrated when my daughter left home for some adventure before settling back into college and the rest of her life, celebrated a job well done and freedom for me to follow my passions of writing books and poetry, songwriting and performing.  I wanted my daughter to walk the world a bit, celebrating this time in her life too. I hoped she would return to join me in my band, our harmonies coming easy since Anna was three, but those choices I left to her and the future. I loved raising my two kids, and some more besides but, at that moment in time, I was celebrating my independence to fly solo again.

    Here, twenty years later, I remember it so clearly.  My son was in New York, living a good life, Anna off travelling, kids who had stayed with us were gone, and I was having a Summer of Self-Love.  No empty days in an empty nest for me! Our nest was now an A-Frame on a small lake in Western Washington, close to the Salish Sea. I spent my days writing and rehearsing, while watching eagles fish and bathe, not two hundred yards from me.  I’m a bit of a lone wolf, and I relished so many days alone to work.

    Anna came home early from her trip, having been bitten by ticks in Indiana/Illinois, while she canoed and camped along rivers with Native American Elders who sought to clean up the rivers, and retrieve sacred artifacts from local museums.  She became sick when she reached her brother’s home on Long Island. By the time she flew home, she was having trouble keeping food down, and soon began vomiting daily. We began the endless touring of Western Washington doctors, trying to find out what was wrong.

    She was the one to research, and she came to me with a printout of the three different stages of Lyme disease.  With what we read, she appeared to be in the second stage, so we took the printout to our rural doctor, who dismissed it, but gave her an ELISA test which came back negative for Lyme.  In the years since, we’ve learned to call this test the “Eliza Doolittle” of Lyme testing, as many false negatives are reported with it. Doctors continued to examine her and, while I wasn’t with her, she was lied to in the hospital: “this is just a little something to help you sleep” the nurse assured my daughter never telling her it was an antidepressant.  I found her in bed, so far retreated into herself that I called her Turtle Woman. Next to her on her nightstand were countless bottles of pills, for various symptoms. I’d had enough. I took her back to her rural doctor, dumped the pills in a bag on his desk, and asked if oral antibiotics would hurt her.  He replied in the negative, so I demanded he put her on them.

    It was like a miracle, yes it was difficult taking doxycycline for 3 weeks, but afterwards she felt so much better!  We thought we were done with Lyme. But a few weeks of antibiotics only gave her a brief remission, before coming back with a fury, paralyzing her left side.  Doctors still refused to believe this could be tick-borne infections, and treated her terribly. Yes, I have been called a Munchausen Mama, by ridiculous doctors who kept insisting we didn’t have Lyme out here, despite being told she had been bitten in the Midwest, rather than Washington State.  Yes doctors, you really DO have Borrelia etc. out here, but that wasn’t our argument at the time. We were both trying to get her better so that we both could get back to productive lives. Life was hell for all of us then. One day she would be writhing in agony on her bed, my husband and I on each side, trying to make sure she didn’t launch herself off the bed, and then the next day she would be unable to move anything but her eyelids…blink once for no, twice for yes was our code.

It was hell.

    It took three years, and a trip to a very wonderful doctor in Hope, B.C. to get Anna tested for Borrelia.  By this time, Borrelia, Babesia, and Bartonella had taken a good hold on her brain and central nervous system. Her blood was sent to a very good lab in California, Igenex, and the results came back not only positive…but CDC positive!

We both sat laughing and crying at the results. Finally you get to celebrate that you were right…what? Being right wasn’t cause for us to celebrate, as Anna was now in a wheelchair, skinny, and in constant pain.  Never mind the psychological ramifications of a bacteria in the brain and the years of abuse and neglect heaped upon her, and us, by the majority of the medical professionals we were sent to.

    There are both heroes and villains in the story of Borrelia etc but, as usual, it is never black or white, good or bad.  Doctors are very confident in their disinformation, and very reticent to admit just not knowing. Both attitudes hurt patients and their families beyond measure.  Can you imagine someone with cancer being abused by their doctors, calling it “just aches and pains of daily living”? Outrageously cruel, one would say yet, my daughter had seizures, and other things happening to her body that she couldn’t in a million years fake…and was still abused.

We were kept in a University of Washington Family Practice Clinic for over four hours one day, as they couldn’t let Anna leave and fall down in the street, making them legally responsible, but they didn’t want to do anything else for her, despite her pain levels, and literally passing out in the doctor’s office.  Nothing was done…just like when she started having trouble breathing while being tested for something, and was brought down to the ER by nurses. All she needed was a nebulizer treatment, but was kept waiting in the waiting room for almost five hours, while they took drunks in before her. You cannot imagine the cruelty Borrelia patients go through, from the very people who have taken an oath to do no harm.  I invite any doctor who believes this disease to be a hoax to come and live at my house for one month, to learn a very different reality.

 

   – Lorraine has been a professional caregiver to her disabled daughter, 37 years old, for about 15 years through the COPES program of WA State. 

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