Lyme Savvy | A one-of-a-kind collaboration between patient and doctor

Navigation Menu

It Is What it Is

Posted on Dec 14, 2009 in Blog |

6 am I start up Stephen’s car – there is ICE everywhere . . . ICE?  Yep. Jeff can’t find his set of car keys.  We spend 20 minutes trying to find them.  He parked behind Stephen.  I start up my car thinking we can move them around, who knows. 6:15 Jeff finds his keys, starts the car, Stephen can pull out of the driveway with no complications. 7:30 am “Don’t forget to turn off your bathroom light before you leave this morning,”  he says. “I know, I know!” I reply.  I hurumph, frustrated at his ‘reminder.’ 8:00 am I’m trying to get Reagan, our dog, in the crate because he is still in some pain from the dog that attacked him last week.  He doesn’t want to go into the crate.  As I am trying to get him in the crate, Jeff calls and says the computer server isn’t working, the internet isn’t working . . . he wants me to talk about it on the phone while Ralphy, our other dog is trying to get to the treats that I put in the crate for Reagan. “Jeff, I’ll be up there in five minutes.” Dog locked in crate.  Husband off the phone.  Coat on.  Purse on arm.  Go back to bedroom and get the cell phone off the charger and into purse.  Heading to the door. Have to pee.  Purse down.  Coat off.  Pee.  Dog barking to get out of crate. Ralphy opens the front door and sits at the bathroom door.  I didn’t make it in time. Damn this Lyme. Change pants.  Coat on, purse on, drive to office. 8:30 am Computers still not working.  Well, some are and some are not.  Some are turning on, some are not.  On the phone saying, “I run an internet company.  I have no internet.  Yes, I would like to be moved up the ladder for customer service.” Text from my son:  Rash is worse.  I feel and look horrible.  Want to come home. Yesterday’s rash was a small line on one arm.  This morning, he looked fine. He’s missed a lot of school with rare second bout of mono, strep,...

Read More

Amy Tan and Stephen

Posted on Dec 7, 2009 in Blog |

While on vacation over Thanksgiving, I read Amy Tan’s The Opposite of Fate; Memories of a Writing Life. I didn’t read her bestseller, The Joy Luck Club. But I knew Tan had Lyme disease and I wanted to learn from her. I wanted to read her experience, strength and hope. Her Lyme story didn’t surface until the final chapter (starting on page 367), but by page 23, I was busy highlighting: ‘We were both easily moved to tears, for we felt deeply and were warmly touched by the warmth of the love that so many friends freely gave to us.’ I read the book slowly; I didn’t want it to stop. Amy and I had become friends in just 23 pages. So by the time I reached page 367, I was dreading what I knew was coming very soon: the end of the book. And then, on page 372, the words popped up from the page. ‘She [the doctor] wanted to do more tests so we could rule out a tumor in my pancreas.’ I don’t have a tumor in my pancreas. But doctors thought I did starting in 1985. I don’t think it really matters, except to satisfy my curiosity, to figure out when I contracted Lyme disease. We know I had it at least five years ago when I tested positive for h.pylori during an endoscopy. Unfortunately, my gastroenterologist didn’t know that h.pylori is a co-infection of Lyme. But I think I have had it since I was 18 years old. My senior year of high school, I contracted viral meningitis. Just a few months later, in college, I was sleeping 23 hours a day. I had to drop out of school and come home to many blood tests that ended up showing nothing. Years later, I suspected that it was Chronic Fatigue Syndrome or Epstein-Barr Syndrome. My physicians didn’t know about those two viruses in 1981. I struggled with depression throughout college and numerous viruses that couldn’t be clearly diagnosed or cured. In 1985, I went to a doctor complaining of diarrhea, upset stomach. I thought I had another ulcer. A few days later, I received...

Read More

Cold Feet

Posted on Dec 2, 2009 in Blog |

Today was the first time that I looked at my feet and felt as though they were somehow separate from my body. It’s a very strange sense. Each morning, in the shower, I turn the water a bit warmer and let it run on my feet for a few minutes to help them warm up a bit. Peripheral neuropathy is a side effect of Lyme Disease (among other diseases). That’s a fancy term for less blood circulation in the hands and/or feet. I get the double winner; I have it in both sets of extremities; more so in my feet than my hands. Neuropathy presents as a burning sensation, prickling, numbness, or tingling, or even a combination. Mine is usually numbness. My feet are usually colder than the rest of my body and I don’t usually notice it. This morning, I turned the spicket to quite a bit warmer and let it rain on my feet. I looked down and thought: hmmm . . . I can hardly feel that water. I’m looking at the water, looking at my feet. I run the water on my shoulder. Yep, it’s definitely warmer, almost stinging. I point the showerhead back at my feet; definitely a difference. What does mean? Who the heck knows these days; I’m chuckling to myself. Each hour of each day (and unfortunately night) brings changes in my body. Some hours are almost pain free. Some hours are excruciating and have me crying out in pain. One hour can be nausea and diarrhea, and then I’m well enough to eat lunch. I can have pain in my back, which is where the pain is usually the worst; then I have a pain in my shoulder that was never there before. Lyme is the most ‘fluid’ illness I have ever experienced. So now, I don’t evaluate my days. I just focus on getting better. But I can’t really feel my feet in the shower and that makes it a little hard to focus on anything else. I remember the physical therapist telling me, ‘With peripheral neuropathy, you need to be careful because it can become easier to scald yourself...

Read More
css.php