Tuesday, May 31, 2011


I am in recovery phase. No one gets it, especially my family.

It has been 13 months and 2 weeks since my IV was removed. Me and everyone thought I would be on “easy street” after that. Well, I am on “easier street,” but what the hell does that mean?

It means that although the IV treatments worked miracles with me and for the most part I am enjoying life as never before, and who wouldn't after nearly 2 years in bed? Despite my gains, I still miss me.

I am adjusting to "new me." I like new me. I am thin, now blonde and taking time to literally smell the roses, but my brain is healing and my emotional resilience is still not there. I need to rest, avoid stress, air flight and family fights at all costs. I prefer to live in a Chrysalis. But unfortunately my chrysalis is permeable to cell phones, text messaging, needy tweeny/twenty-something or other children, and aging parents.

I still have trouble with air-flight (next post), excess stress, excess stimulation i.e.loud noise, bright lights, and crowds.

Let me give you an example of my progress. I just returned from our 4th child's college graduation, (yeah us!!). It involved transfer flights from Boston to Ohio, 90 degree weather, some family tensions (nothing too bad), noisy restaurants, shopping with 3 daughters for clothes, and all of this on the heels of having attended 2 funerals (no, not both Lyme, but see my last post). That is a lot of stuff, don't you think? I handled it all well until the last day of our trip when it all became a bit too much. And I felt overwhelmed, sad, depleted and much like burned toast.

I had mood instability but handled it without Clonopin or making a scene, unlike exactly one year ago when I attended our 3rd child's college graduation. At that time, I had to deal with air travel, heat, and being left alone amidst an enormous crowd all while bagpipes and a band played on, and on and on, and speeches, (with loud, intermittent clapping) seemed never ending.

At that time I had a full blown Limbic seizure exactly one hour after the ceremony, when in the safety of our hotel room, (although it actually began with a irrational argument with my husband in the elevator up to the room). My seizure that day involved nearly murdering my husband, and pretty much totaling our hotel room, all while missing the celebratory dinner. So there is great progress here, but I still miss me; resilient Superwoman me.

My lesson here is: be kind to me, be patient, and get to know "new me," she's not too bad, and I like her most of the time.

Friday, May 27, 2011

Indecision Can Be Deadly

This week a Lyme friend lost life from Lyme disease.

Sadly the typical cause of death from Lyme is suicide. Wendy had little support from her immediate family and was paralyzed with indecision about what treatment option to go with. She made the rounds to all of the best Lyme practitioners. Eventually weight loss and poor nutrition made an intense IV therapy dangerous, though it was offered eventually. I had arranged for a nutritionist and personal chef to provide companionship and food.

I told her father, a Lyme supporter, that she should have been hospitalized. "But where, he asked?" He told me the week her husband had taken to the best hospital in the Medical Mecca of Boston. But they did not know how to treat her. They do not understand chronic Lyme, though we live in the nation's Lyme belt.

I have been suicidal many times throughout my illness. Without a friend and husband I could have lost my way.

Her dad and I hope to start a Lyme prevention system in her honor. Starting with a nonprofit devoted to prevention and support for suicidal sufferers.

Do find a program that feels right and stick to it. Pay attention to your nutrition, detox, and hormones.

Most Lymies have some issue with weight, due to drugs, poor gut function, metabolism and hypothalmic dysfunction.

Stay positive, get support, stick to a program and if it is not working or doesn't feel right change directions with your practitioner or find another. I use a team of healers and physicians. My program works for me but everyone is different. There is no one treatment for Lyme disease. At least that's what I think today.