This journey has been going on twenty years. Even before that the disease showed signs that were mysterious. I have been infected multiple times starting when I was a child. I am going to tell you my Lyme story. Pardon if a word is missing or is spelled wrong – that is my Lyme brain. I used to have the ability to write fluently and accurately. I am stepping off a cliff to see if I can fly by writing my story.
I was born in California. Nature was my wonderland. Thanks to my parents, I had a need to explore the bend in the path. My grandparents took me in a camper all over the Western states from age four to thirteen. Such magical moments, such joyous memories of old growth forests and endless desserts. My parents split, and at ten years old, I was on both coasts. New horizons opened up; New York City, Canada, Newfoundland, the East Coasts states.
I suspect I was first infected in Santa Ynez Valley while we were visiting friends that lived on a ranch. My dad was there to hunt ducks and quail. I spent my time running around the barn, and the creek with the other kids. I remember a small tick on my forehead, and my dad put a lit match on it so it would crawl out. The plan didn’t work and my dad had to yank it out.
Santa Barbara was home. My best friend Lindy and I couldn’t resist a tree to climb up (we are still friends 48 years later). We shared a silent communication. We walked along paths in the mountains, running down the same paths. Collecting lizards and tad poles. And ticks. Into high school we hiked the same paths into the mountains to falls and pools where we could see out over the ocean to the Channel Islands.
Part of the summers were spent on the East Coast – New Jersey, New England, Canada and Newfoundland. Bicycling down gravel roads to rivers; laying down on the grassy banks. Exploring forests with friends. The white tail deer danced through the open meadows. Prime tick season and locale.
I had periodically high fevers throughout my childhood. I had chronic bronchitis and strep throat. I remember walking to school in a daze and coughing like a seal because my stepmother deemed I was well enough to go to school. No one took me to the doctor.
Sports – I was always athletic but not a shining star on the field, the gym, nor in the pool; I liked that way. I intentionally came in second. In high school I ran track – the mile and the two mile. In college I ran distance for fun, and I started having trouble with my knees to the point that I couldn’t run anymore. So I took up road biking.
Studio art was my major, and design was my bread and butter. I put myself through college with almost no debt. I worked as a waitress, an art director for the school newspaper, and a bookkeeper. After graduation I moved to San Francisco with the ambition to become an art director. I would relax by climbing to Sutro Towers from Noe Valley or riding my bike to the Marin Headlands. I had a few raging fevers that lasted for a week to three weeks. I started getting pain in my balls of my feet. I achieved my goal of becoming an art director for a major retail chain.
Then I moved to Marin, got married, and started getting pregnant with multiple miscarriages. I was still strong – we mountain biked up Mt Tam every weekend, we waterskied, we snow skied, we scuba dived, and I hiked along the Miwok trail. I finally got the first trimester with my daughter with complications. The second trimester was a breeze, the third not so much. I was put on bed rest because I was going into hard labor at 26 weeks. I was so exhausted it wasn’t difficult to stay in bed. I managed to keep her inside of me until the 37th week.
Arielle was a beautiful baby – petite, alert and loving. But she was very sensitive and needed to be held constantly. I suffered from post partum depression – back then it wasn’t recognized as a real thing. I had trouble getting back to my routine – I was so exhausted. We wanted a second baby as soon as possible. Multiple miscarriages happened again for three years.
I took Arielle to New Jersey when she was 18 months old during the summertime. My mother and I took a walk in a field. My mother came down with Lyme disease – fortunately she was on the East Coast. They treated her quickly. I didn’t even consider that I might have it too. When Arielle turned two, my favorite uncle passed away from cancer. At the time I was three months pregnant. The baby died at four months – I had to go through full labor. I was never the same after that.
I tried to hide my illness from my family and my friends. I got up in the morning to attend to Arielle and I was back in bed by ten. I was running low grade fevers. Arielle was such a sweet angel – she played beside me and I read her stories. By four I sprang out of bed, cleaned the house, and made dinner for fear that my husband would think bad of me. Three months into this my feet were to painful to walk normally, my elbows hurt when I drove, and my hands were shaking. I saw a doctor, and she said I was depressed without taking any labs. Of course I was depressed about being sick! I saw a rheumatologist and she diagnosed me with RA, Sjogrens and fibromylgia despite the labs didn’t show any evidence that I had RA or Sjogrens.
The best thing I did was to work with a body worker to get over the immense fear of not knowing what was going on with me. I started to visualize again (a form of meditation). After a year of being terribly sick I started to get my life back.
Happy day! I was pregnant with my son – the same route as the pregnancy with my daughter. Josh was a handsome healthy heavy baby. He was not fat – he was solid. He was strong, alert and funny. I couldn’t believe such a tiny baby could have a sense of humor. As soon as my son was born I had a desire to have a third child. My doctor said no more children – he was relieved that both my children were safe and healthy. This time around I had no depression, but it was even harder to recover from the pregnancy.
I always tell my children that I kiss the air that they breathe.
When my son was nine months old, I went down to see a rheumatologist in LA who was treating RA with antibiotics. He had 15% success rate (maybe they were Lyme patients) but I wasn’t having progress on the RA medications. He told me that I had only fibromyalgia. I was so disappointed. I knew that I had something more serious than that.
I still tried to keep in shape. I worked with a trainer for two to six months and I collapsed. As soon I was able to get out of bed I went back to training. I tried Bikram yoga – I loved it. Finally after three years of doing it I couldn’t do it anymore. I substituted short hikes in the Sierras and walks with my dog to the lake. Eli, a golden retriever rescue dog, loved to swim and I swam along with him.
I tried to keep my friendships.I cancelled at the last minute too many times and I didn’t have the energy to even call the doctor let alone friends. One by one friendships withered away.
The years went on. Doctor after doctor, labs after labs. Labs showed different things – one time I had RA, one time I had Lupus, and on and on. Doctors were suggesting that I was crazy. You know that look, when they are not taking you seriously. I was having left chest pains – they did nothing. I was hospitalized because I was going numb to the point that I stopped breathing and the labs showed nothing. They sent a psychology intern to see me. Doctors prescribed me antidepressants and when those didn’t work they prescribed me medications for bipolar disorder (despite no manic episodes). Those made me almost catatonic. Clearly I wasn’t bipolar.
Sure they tested me for Lyme disease using one test. Over and over again it showed up negative. No doctor was diagnosing me clinically. I finally gave up. I had a SPECT scan of my brain because I got a concussion and I was noticing that I had memory problems. The SPECT showed diffuse little white dots. And an MRI scan showed the same thing. They said that it may be toxins, and it may be MS.
I continually adapted my life to my ever diminishing abilities. I had to quite art directing to get pregnant. I opened a daycare/preschool between my kids. When I got pregnant with Josh I had to stop that too. I helped my husband in his ventures by doing product design, set design, hair and makeup, writing and editing. I also went back to school to learn interior design. I was involved in remodels and new builds. Until I couldn’t do that anymore.
My children very bright but they have processing disorders. My daughter is very sensitive to touch, taste and stimulation. My son had mild dyslexia, and he has trouble mastering math facts. I was very active in getting them help and I am happy to say that they are flourishing. Arielle is on the deans list at AU, and Josh is brilliant with science, history and media. It doesn’t make sense that they would have these difficulties – my ex-husband is very bright and he has no learning challenges and neither do I. There is no family history.
It took a toll on my ability to parent. I was super mommy until I wasn’t able do it. And my husband was disgusted with me. When Arielle was seven and Josh was four, my world shattered. I found out about my husbands activities and it broke my reality. I tried for two years to keep my family together and it took a toll on my health. For months I couldn’t get of bed. I had asthma, I had bronchitis, I had pneumonia, I had mono. I realized that if I stayed in the marriage I was going to die.
Adjusting to single motherhood wasn’t easy. I had terrible guilt for my children, and they were going through difficulties adjusting to the divorce. I felt like I was separated from the world by a thin curtain. After an attempt at a full time job, and after a death of a close friend, Richard Carlson, I realized that I should go back to back to school and earn my MA in psychology. And I did.
The plan was to get my MA and get licensed as a MFT and start teaching. I loved to discuss things with the class and my professor said I should go for my PhD. I was constantly grateful for the privilege to be in school. My cohorts and I practiced our new therapy skills on each other. I discovered that I have a talent for art therapy and play therapy.
During the second year of graduate school, I had a strange thing happen to me. I was sitting in class and we were having a group discussion. It was my turn to speak – the room turned gray and I was trying to get my words out. My classmates had a puzzled look on their faces. They reported that my words were soft spoken, slow and garbled. That was the first day that my ability to speak started to go.
I went to the doctor once again and he set up a four minute appointment with a neurologist. At that time, my voice faltered intermittently. She said there was nothing wrong with me. How about a stroke? You would think that they would have at least checked that. Then my COBRA ended and I went without insurance for two years.
After graduation I started interning at a private clinic. I was responsible for running women’s groups, and co-facilliting group presentations. A year into the internship I could no longer do the presentations because my voice wasn’t strong enough. I joined another private practice where I didn’t have to do groups and it provided insurance. I was looking forward to getting my license. The work was so fulfilling, I felt it was my calling. Increasingly I was sick; my voice was faltering. I felt lightheaded. My clients were so bonded to me, they didn’t mind that I had to repeat myself sometimes.That job was a blessing in so many ways.
Muscle fasciculations, trouble swallowing, numbness in limbs, facial paralysis, and on top of that my voice was getting worse. My GP suggested that I may have ALS – bulbar type. I was evaluated by a speech therapist and she also thought that too. That crisis took me into a tail spin. No one doctor was even considering Lyme Disease. They left me to die a horrible death.
By September I was seen by a ALS specialist. I didn’t have ALS. UCSF diagnosed me with PNFA (Primary Non-Fluent Aphasia). That is subtype of Primary Progressive Aphasia. For which there is no treatment. I would have lost my voice entirely, my hearing, my reading ability, and go demented and die – over a short span of years; 2-7. That didn’t explain the physical symptoms.
By October I was rushed to hospital for a heart event. Possible TIAs. There was another hospital stay for the same thing. They did a full work up on my heart. My heart is structurally fine. The cardiologist looked at me in that way – you know the look. Now when my blood pressure plummets, I get pain in my left chest, arrhythmias, I don’t go to the ER.
They didn’t consider that my autonomic nervous system was under attack.
I had to retire as a therapist because I couldn’t communicate with my clients and I couldn’t drive reliably without a danger of another heart event. It was so hard to accept that. I questioned God – I thought I was serving him by being an instrument of healing.
Finally the angels directed me to a Lyme support group. That first meeting they gave us a LL doctor’s name that handles complicated cases of Lyme Disease. I went to San Francisco for my initial session and to get the special labs drawn. I stayed in the city for four days because that how long it took to draw the proper labs. Needless to say I am positive for Lyme Disease, and Fifths Disease (a virus). I have been going every six weeks to visit my LLMD. She started my on oral antibiotics and anitvirals because she didn’t want to send my body into shock starting off with IV. She confirmed I was infected multiple times.
My friend Karen has hung in there with me. I know I haven’t been the friend that she deserves but she loves me still. She so generously let us use her gorgeous house to do a family wedding party. When I am around her I feel her happy loving energy running through me.
My mother has been very supportive – exceedingly so. I don’t where I would be without her. It is so wonderful to have a parent that steps up and gets it. It truly makes me healthier with all the love around me.
I have been on IV Rocephin for 90 days. I am going to start this week with IV Azithromycin and IV Rocephin. I have a PICC line. I am allergic to Rocephin so I have to take IV Benadryl before. That greatly helps. I have seen improvements in my physical symptoms but not my voice.
My days are spent on the couch with my doggies. Sometimes I can’t walk into the kitchen, and other days I can go out for one errand. On days like this my brain is soooo slow; it takes me time to figure out how to spell simple words and the proper syntax. I battle with the dialogue in my head that tells me I am lazy. I mostly numb out my body, and I have done for years. When that voice starts rearing its ugly head, I tune into my body. I am always surprised how sick I am, and how much pain I am in. I am continually surprised when I open my mouth to speak I can’t form the words. Sometimes I am aware of how I sound, and sometimes I think I am speaking clearly. I can’t bare the look on people faces when they hear me speak. They are so shocked because I look relatively healthy. I am just glad I am breathing.
I contemplate starting a Lyme support group in my town because two other groups in my area are too far away, and one is at night. On my good days I think I can do it, today I doubt I can do it.
I am starting this blog to connect with people in a deep and meaningful way…