Thursday, October 23, 2008


I just got back from a nice walk all by myself. I am happy to find that the bakery right here in Dobel has the best soft pretzel I've had yet. For those of you coming here, it's the second bakery. It's also nice that food is less expensive here. My pretzel and cappuccino were only 2 euro.

When I got up this morning my mind was moving a mile a minute. I was thinking about the fact that my "healthy" over the years has not been healthy at all. I didn't know any different since I've had this for the majority of my life. All along I thought I had a tendency to be lazy, that I had to push myself to overcome my inherent sloth. As a result, I was the opposite. I worked hard at everything I did and was successful right up until I could no longer push myself to overcome the illness.

I look back at the four times I was overcome by the Lyme and see that there were several factors that made me ill. All four times I believe mold exposure was part of the last straw (3 out of 4 times I had known mold exposure), but also I was pushing myself all four times. Perhaps it was as my immune system got stressed from both the mold and the Lyme that I had to push harder.

Back when I was in high school I went to bed earlier than my friends and went through the day in almost a daze I was so fatigued all the time. I remember looking at my friends and thinking, "Why aren't they tired like I am?"

I remember in college that so many of my friends could party all weekend and I had to be careful to drink a lot of water and take vitamins when I drank, and typically I felt bad for a couple days afterward even though I drank half what everyone else did. In my 20's I remember having two glasses of wine .... 2! .... then I was sick for at least three days.

My "healthy" .... my 90% well is probably different than a person who does not have Lyme. I have been told by a friend on Lyme chat that I consistently underestimate how poorly I'm doing. Perhaps that's because I've lived with this for so long. I get back to having simply some fatigue or some aches and consider myself "healthy."

Today I'm out of bed .... dressed, hair done, makeup on ... went for a walk .... am sitting up at my computer .... this is a good day for me. I have pain in my left shoulder and down the left side of my back ... I am slightly fatigued ..... I have a little air hunger .... this is as good as it gets for me .... well, that's not true, for three days after I got rid of my moldy mattress I felt what I would consider totally normal.

I have been off antibiotics since August .... I have been off anti-malarials since September .... and I'm on an upswing. Does this silly light work? Could it be this simple? What will it feel like when the Lyme is gone? It will be a whole new paradigm for me. Will it be gone when I leave? Will I have more to work on? I know this light is working at least as well as any treatment I've been on yet .... but does it work better?

In the past five years I have dropped out of everything. Some days I care for my family, other days they care for me. That's it other than playing my flute at Mass and funerals. If I'm cured, life will certainly change.

On the one hand, life has been taken away from me. It has been incredibly boring. But you can't just look at the obvious. When I really ponder my illness I see that it has had so many good effects on me and my family.

For my family, they have learned compassion and patience. They have had to help me to the bathroom. They have had to discern when to let me stay in bed all day and when to push me to get up and get out of the house. They have had to clean, cook, and do laundry. All six of my kids have become self-sufficient. One day my two youngest were steaming carrots and browning bratwurst for dinner. Our family is a whole ... we are together and have experienced this together. We are not just 8 separate people. We are a unit. Hardship does this to a family. I wouldn't trade what Lyme has done for us for anything.

For me, I have learned about suffering. I have learned there is more to life than accomplishments. We, as Americans, tend to a "more, more" lifestyle. We put value on what we have done or what we have rather than who we are. I have learned that being is more important than doing.

So, here I am all the way in Germany, thousands of miles away from home, with two others that I had never met before to shine a light on me while vials are taped to my abdomen. Strange indeed. What is stranger are my emotions this morning. I think I'm letting go ..... or am I holding on? .... it's hard to tell. I've always lived with Lyme, so I don't know any different. I do feel I've reached a turning point, if not physically, at least emotionally and spiritually.


Tracy9 said...

What a wonderful written expression of your experience; I so enjoyed reading this! You are an artful writer and it is a joy to be following your blog.

Keep on writing, we are hanging on your every word!



BartyBunchMom said...

I agree.

I read this and I think you've been able to step back and see a bigger, wiser picture, and in doing so you've helped me to do it too.

Whether or not I follow in your footsteps with the photon therapy, I have learned a lot just following your blog.

I wish you all the best. Thank you so much for your generous blog.


Ashley said...

I too loved reading this. It almost made me cry because it's so heartfelt and real.

-I have learned that being is more important than doing.- I especially loved this part. I agree.