To read a short version of this story, read my post on No Time Like the Present.
On March 23, 2001, my life changed forever. It was the beginning of the nightmare of Lyme Disease. What we thought was stomach flu turned into a 40 day coma and brought me to the brink of death.
At first we didn’t think anything of it. I thought I had the same stomach flu that had been doing around my office at work. But then I started having difficulty breathing, so Chris knew that it wasn’t stomach flu and called the paramedics. Before we could reach the hospital, they had to pull the ambulance over so that they could intubate me. I had lost the ability to breathe on my own. As my lungs failed, that started a whole cascade of failures.
Upon entering the hospital, my blood sugar was 1,400. Normal is 100 and death usually occurs around 1,000. When the paramedics came, I was still walking and talking. I had no history of diabetes before this. We didn’t know it at the time, but my pancreas had already shut down. My body had become acidotic, and was dissolving itself. I was bleeding internally. My kidneys also failed, so my body lost its ability to filter out toxins. The doctors didn’t think I’d live through the night, but against all odds I survived. What we didn’t know was that the worst was still to come.
Because of the high blood sugar, I got a systemic yeast infection which ran wild in my body. Every place they started an IV became instantly infected. They were pumping fluids, blood and the most potent of antibiotics into me round the clock. I developed a 107 temperature for about a week or so. They packed my body in ice to try to cool me. I was on continual dialysis because of the kidney failure. They took my blood out through the jugular vein in my neck, sent it to a big machine that filtered and cooled it, and then pumped it back into me. My room in intensive care was so cold it resembled a meat locker.
The infection started to eat the retinas of my eyes. The doctors were afraid it would soon attack my brain. Chris and the doctors decided to put me on a real strong medicine which most likely would permanently kill my kidneys. Kidneys or life? They chose life. You can replace a kidney.
There were more things that went wrong, like the staph infection, but I think you get the idea. I hung on, and somehow made it through.
When I woke up out of my coma, I had a lot to learn about being so sick. The most obvious was I couldn’t even move my fingers. For every day in a coma, I lost 1 to 1-1/2 percent of my muscle mass. So I had to have therapy to start to move again – even my hands. I couldn’t roll over in bed, sit up or feed myself.
When I finally came off the ventilator, I could not talk at all for about a month and only very quietly after that. My voice is still altered. Because of being on the ventilator and having feeding and drainage tubes down my throat I have a lot of permanent scar tissue. The wonderful news was I could still see and my brain seemed to be intact.
The doctors never did learn why I got so sick. They also had no idea why I seemed to return to health, but they did enjoy taking credit for it. They called me a miracle. On July 5, 2001, I was released from the hospital. I wasn’t even able to sit up by myself. I could barely feed myself and when I could, I was unable to keep food in me. I no longer had any medical insurance and the hospital kicked me out.
Over the next couple of years I seemed to heal remarkably well. Kidneys functioned wonderfully. Blood sugar returned to normal. I slowly increased in strength and energy. I gave up the wheel chair. Still moved slowly but well.
On November 1, 2005, two days before we were going to move from Denver to Portland, I again ended up in the hospital. This time with a blood sugar of 1,100 and pneumonia. Once again, for no apparent reason, I was close to death. This time I was diagnosed as a Type I diabetic (insulin dependent). With only being out of the hospital two weeks, on November 23, 2005, we drove finally drove to our new home in Oregon. I took a couple months off to recuperate and gain strength from my last illness before I got a full time job.
In Canby I found a doctor who eventually figured out what was wrong with me. Finally in May of 2009 I was diagnosed with Chronic Lyme Disease. Yes, it is the disease that is caused by a tick bite. I was instantly put on a combination of three antibiotics which I’ll be taking for life.
The reason why I recovered so well from both my hospitalizations was that I was put on heavy duty antibiotics. Once the infection seemed to clear up, they took me off the meds. Over time, Lyme took over my body again. Fortunately, we found a Lyme aware doctor who got me back on antibiotics and kept me alive. There is no known cure for Lyme Disease. From looking back at my life and symptoms, I’ve had Lyme at least 25 years or longer. It’s a disease that frequently goes undiagnosed, and ends in death.
Chronic Lyme has affected my life in nearly every aspect. I think the biggest aspect is loneliness. Because of the physical limitations I have (constant fatigue, achy muscles, slow, stiff, unable to move a lot), I slowly retreated from activities and life in general. Prior to getting Lyme I was a runner, very social, active in volunteer organizations, popular at work. Then slowly over the years, I shut down every activity I did.
In 2012, my health started getting worse. I have edema real bad in both legs and one of my legs started to leak water. I was put on another antibiotic to help with that. That means I was then taking four different types of antibiotics to stay alive. It was a juggling act… some had to be taken with food, others without food. One was so powerful that I’d vomit it back up and I’d have to take more until I could keep it down. My doctor said they’d done as much for me as they could. I would always be on antibiotics. Eventually they wouldn’t be able to control my symptoms any more, and I would die. By October of 2012, I was sure that time had come. I could feel my body start to collapse again, and I didn’t think I had any more strength to fight. How many times can you cheat death?
Early in November 2012, I went to see a Qigong Healing master. We decided to try Traditional Chinese Medicine, since Western medicine had given up on me. It’s definitely a different approach, but against all odds, my body is is actually starting to heal. I am off of all my antibiotics, something I was told I would never be able to live without. There are days I actually feel alive and have energy. It is a foreign concept to me and I sure do enjoy it. Life is good and so full excitement and wonder. I can’t wait for the next couple of years to see what life will bring. I hope that in a year from now I will be healthy and strong enough to start training as a Qigong instructor and eventually a healer.
This photo was taken while I was in the hospital…one of the few times I was able to go outside. Chris brought our 4 dogs to come visit me.
These photos were taken a couple months after I was released from the hospital in 2001
There was one particular nurse in the ICU that was so special to me.
I did stay in touch the nurses and physical therapist and a minister from my rehab.