Living with Lyme

I’ve lived nearly 25 years with and undiagnosed case of Lyme Disease.  Yes, it is the disease that is caused by a tick bite.  When I was in my early twenties, I was an athletic person (running, tennis, roller skating) and had a lot of friends and activities in my life.  As my Lyme Disease progressed, I slowly lost more and more control of my body.  The one thing that really got out of control is my weight.  I gained a whole lot of weight fast.  I believe this was because toxins are stored in body fat and Lyme is all about intoxicating the body with foreign material.  Lyme comes with a lot of stiff joints and pain.  So I slowly stopped doing a lot of things and that included activity with people.

This is a writing summarizing some of what I’ve been through when my body totally shutdown.

1) On March 23, 2001 my life changed forever. It was the beginning of what appeared to be a nightmare for me and Chris, my partner. I went into a 40-day coma and had to battle multi-organ failure (lungs, kidney, and pancreas).
2) Upon entering the hospital my blood sugar was 1,400. Normal is just under 100 and death usually occurs around 1,000.
3) Because of the high blood sugar, I got a systemic yeast infection which ran wild in my body and I had a 107 temperature for about a week or so. The infection started to eat the retinas of my eyes. The doctors were afraid it was start eating my brain. Chris and the doctors decided to put me on a real strong antibiotic which most likely would permanently kill my kidneys.

4) No one had any idea if I would be able to see again. Or how much brain function I would have since my temperature was so high for so long.
5) About a week after going into my coma, I was laid off from my job. Not because of me being sick, but the company went bankrupt. Both Chris and I worked for the same company, and they were able to keep me on their insurance through the end of June. But once the company totally shut down, there was simply no insurance available.
6) 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 coma, I lost 1 to 1-1/2 percent of my muscle mass. So I literally had to have therapy to start to move again-even my hands. All this means, you don’t even begin to move your legs for a month or so after awaking from being in a coma, which only makes those muscles more week.
7) I could not talk at all for about a month and only very quietly after that for months. My voice 10 years later is still altered. I was on a ventilator and also had feeding tubes, drainage tubes (because of high acidity contents in my body) down my throat so I have a lot of permanent scar tissue.
8) Wonderful news was I could see and my brain seemed to be intact.
9)The doctors never did learn why I got so sick. They called me a miracle. They also had no idea why I seemed to return to health, but they did enjoy taking credit for it.
10) 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. The basic reason I was released was I no longer had any insurance and the hospital kicked me out.

11) I went home on very hot day. Chris and I were alone to rehabilitate me. We lived about 30 miles from any town. So just getting groceries took a long time. Our house and the 35-acre ranch was lovely.
12) Since Chris was also laid off and I needed 24-hour nursing care from her, we eventually lost our ranch (foreclosed and filed bankruptcy) and sold everything we had. Moved back to Denver, Colorado and rented a cute small house from a friend of a friend.
13) 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.
14) On November 1, 2005 two days before we were going to move from Denver, Colorado to the Portland area in Oregon, 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 and in the hospital. This time I’m diagnosed as a Type I diabetic (insulin dependent).
15) With only being out of the hospital two weeks on November 23, 2005, we drove finally drove to Beaverton, Oregon our new home.
16) I took a couple months off to recoup and gain strength from my last illness before I got a full time job.
17) Chris and I are not city people. So after a couple of years, we moved from Beaverton to Canby which is a little town about 30 miles south of the portland area. It’s a wonderful small community.
18) I’ve always enjoyed photography. And Chris and I bought me my first grown up camera. It was a Sony pre-DSL. I was afraid to use all the lenses. (Silly me!)
19) In Canby I found a doctor who eventually figured out what was wrong with me.
20) 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.
21) The reason why I recovered so well from both my hospitalizations were I was put on heavy duty antibiotics. But since I didn’t take them all the time, Lyme comes back.
22) From looking back at my life and symptoms, I’ve had Lyme at least 25 years or longer.
23) Those 25 years is half of my life, I’ve been battling a life-threatening disease.
25) Chris and I made a decision that I wasn’t going to work. I had fought so much in my life to stay alive, I may as well enjoy my recovery.
25) In June of 2009 I joined Redbubble. I had no idea how much a life-saver it would be for me.
26) I uploaded a couple of pictures and just ignored it for a couple of weeks, thinking nothing could come of it.
27) Chris and I got back from the beach and I checked my email and I got one from Redbubble saying I sold three greeting cards.
28) So I had to check out my site. One of my pictures had been featured by Redbubble (old format). And it had 125 views and tons of comments. Needless to say I was hooked on Redbubble from that moment on.
29) Chronic Lymes has effected my life in nearly every aspect. I think the biggest aspect is loneliness.
30) 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.
31) Prior to getting Lymes I was a runner, very social, active in volunteer organizations, popular at work. A typical early twenties person. Then slowly over the years, I shut down every activity I did.
32) I’m so glad I met Chris before I totally shut down. I met her at one of the last places i did some volunteer work with. And we are a perfect match.
33) Chris and I are true partners and soul-mates in every sense of the word. We not only finish each others sentences….we’ll start saying the same thing at the same time.
34) Chris and I over the years have both lived and worked with each other. In fact, when I first got sick we worked for the same company.
35) We have two pugs who we adore and they adore us.  Chris had only had dogs up until I met her. And she just adores and spoils our two orange tabbies.
36)We live in the best town in the world. The only other place I would want to live is on the coast of Oregon some where with lots of trees, shade and the Pacific Ocean nearby.
37) I’m finally getting healthy and energetic enough to start volunteering again (more than Redbubble).
38) I now volunteer for an agency with helps the disabled remain active. I spend a day with some very wonderful and loving people each week.
39) Chris and I also do some volunteering with the Adaptive Riding Institute in Scottsmill, Oregon as their “official photographers”. Now that’s a dream come true.
40) There are days I am full of energy and days I have absolutely no energy.
41) The heat really gets to me. Once it gets over 78 degrees my Lymes kicks in. I get real tired, achy and stiff. My blood sugar spikes. So those days I take it easy.
42) Chris is so wonderful and adjusts to my energy levels. We don’t always do what we want to do.
43) There are times we miss out on photo ops because it’s too hot or I’m too tired.
44) There are times we have to cancel meeting friends because of my Lymes.
45) We have learned to really just enjoy the simple moments of life.
46) Enjoy the simple pleasure of our pugs snoring in bed.
47) Enjoy the routines of our cats. One of our cats is actually Chris’s alarm clock in the morning.
48) Life is good and so full life and wonder.
49) I can’t wait for the next couple of years and see what it will bring.
50) I know the last two years have been spectacular and can’t even image what is in store!!!!

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.