After months of being severely limited by Lyme – worn out by an hour or two of daily activities and resigned to holding court on my red sofa for most of my waking hours – I am enjoying a period of respite from herxing between treatments as I build up my immune system for the next big round of IV antibiotics. Mind you, at the moment I still only have maybe a quarter of a tank of gas per day to run on, but that’s enough to get me a fraction beyond just the basics. It’s enough to allow me to drive myself to the weekend house all by myself on better days when I’ve planned well, which means an incredible sense of freedom. The first day, I settled in to read a stack of library books and a bagful of New Yorkers and simply…rest. But yesterday I was seized by the exuberance of the season and went to the hardware store to pick up a small shovel and hot pink petunias. Continue reading
Category Archives: Staying Positive
As many of us know, Lyme disease identified and treated early means a quick road to health.
Left to invade the body deeply over time, Lyme and other tick-borne infections can be disabling—and even fatal. Treatment in those cases can be a long, expensive, and rocky road.
I should have been on the shortest path. I was treated based on a tick embedded in my hip, a rash, flu-like symptoms, and severe pain all over my body.
But when my test came back negative, my practitioner stopped the month of antibiotics that would have saved me from a nightmare that has been going on for three years now.
On Tuesday, members on the House side of Virginia’s General Assembly voted on a bill requiring doctors to tell patients that Lyme testing is inaccurate. So when I had the chance to join fellow Lyme advocates in Richmond the day before and help inform delegates, I grabbed my cane and pain medication and climbed carefully into a friend’s van.
I wouldn’t have missed that day for anything.
Apparently there are people who actually hate Valentine’s Day. Too commercial, they say. I’ve never experienced it that way.
While I was visiting family in northern New Jersey a few days ago, a snow storm blasted across the Northeast. Nemo left eight inches of fluffy stuff covering everything in sight.
And overnight, my sister’s household slowed down to my speed. Lyme speed.
Recently, I logged on and saw a posting on my Yahoo lyme support group from Rebecca of Hampton, Virginia. She had written a list that touched us all, and I’d like to share her thoughts with you.
I am learning…
To chill out.
To love myself not just on good days, but bad days, too.
To reach out to others.
To let go of my need to control.
That friends are treasures.
That hugs, kisses, and a little together time in a family go a long way.
That it’s OK to not be OK sometimes.
That I’m never alone.
That every moment of every day is a gift.
That none of us deserve this and we matter in a very special way.
That this disease is ugly—but I’m not.
Someone special took me on a drive along the Chesapeake Bay in southern Maryland the other day, and we discovered a cozy place serving up key lime pie made from the tried-and-true recipe of the previous owner. The minute I saw the sign advertising pie in front of the old house-turned-coffee house, I knew I had to have some.
Sitting in the warm, inviting front room and savoring every bite of tart, creamy deliciousness and crumbly graham cracker crust was the perfect celebration of my first day without Lyme symptoms in five months.
I heard an excellent idea from a former Lyme patient who now makes her living helping others manage all the ins-and-outs of this disease. She suggests ditching pens for pencils when it comes to writing down calendar entries.
Because back when she was ill, she started noting social events and appointments in pencil. That way, she says, if she had to cancel something, she could erase it and move on. She didn’t have the stress of seeing her calendar filled with all the thing she crossed off because of Lyme.
That’s an idea we can all use as we move into 2013. In the past few days alone, I have had to miss the funeral of a friend’s mother, pass on my wonderful brother-in-law’s major birthday celebration four hours away in New Jersey, and cancel a reunion lunch with a dear family friend.
At least when I look at my kitchen calendar now, I’m not reminded of all that, and can look to the next week with a fresh outlook.