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Surrendering to the Cot

Posted on Jan 31, 2011 in Blog |

Sometimes surrendering comes in phases. Today, I advanced to the next phase. I bought a cot to put in my office. I own my own company. I am my own boss. For more than a year, I have tried to ‘tough it out’ and stay at work longer than I really should. Other times, I have given in and gone home early. Of course, the guilt comes home with me when I do. But I have also learned that when I stay too long, I get nothing done anyway, so it’s futile to stay. But today was one of those times when the fatigue hit early and I was very frustrated at the prospect of leaving early. When I first got the diagnosis and started treatment, I talked about getting a cot, but really thought it was like wimping out. Maybe it is, maybe it isn’t; doesn’t really matter anymore. I just needed to figure out how to keep working during the day. When I come home and lie down for half an hour, I can think again and can come back to work. So instead of coming home, I figure I can do this in the office and get more work done. So, I’m sure someone will walk into the office tomorrow when I am lying down for the first time, trying to get the energy back, and it’s going to have to be ok with me. Surrendering doesn’t mean I have to like it. It just means I have to DO it. The rest will follow. And hopefully, that includes the continued healing. Share...

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Opportunity to Heal

Posted on Jan 24, 2011 in Blog |

I started a poetry class this past weekend. It’s my first ‘extra-curricular activity’ in more than a year and a half. My goal for this poetry class is to figure out how to describe the past year of my life through the Lyme disease diagnosis and first part of treatment in some sort of succinct manner. I tend to write too much, too long . . I can’t seem to condense my words and still get the point across . . . Every time I try to describe it, the words come out too histrionic, or over-exaggerated. Though, I don’t believe they are, I think others just think, ‘Come on, it’s Lyme disease. It’s not cancer.’ It’s not cancer. I am not going to die from Lyme disease. But my aunt did. And I know others who have died from Lyme disease. But not everyone dies from cancer. So why does Lyme disease seem to have less of a sympathetic ear than cancer? I’m really not trying to work the sympathy vote here. I’m simply telling people what I think, feel, and experience. And for the past year, those thoughts, feelings and experiences have centered around my Lyme disease and treatment. This wasn’t my original plan for 2010. I had plans to expand my business, sell licenses to other communities around the nation. This was going to be a year of real growth and expansion for me. Well, as we all know, that’s not what happened. So I had to work with what I had. Backtracking a bit here . . . I remember when I went through the end of my first marriage back in 1988. As with most divorces, the end was not pretty. I traveled half way around the world, back to my parents, back to a country I hadn’t lived in for two years. My biggest transition: getting a telephone answering machine. It seemed so bizarre to me that I could leave messages for people if they weren’t home. It seemed more bizarre that I could screen my calls, thus not having to pick up the phone when my ex called. Which he did. A...

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Note to My LLMD

Posted on Jan 4, 2011 in Blog |

Today, I visited with a fellow Lymie who has been filled with despair and hopelessness. The past four days have been very difficult in my own household as well. It’s not a good scene when all three of us are feeling pain and fatigue. Sometimes, I envision going in and reading the riot act to my LLMD; I’m so filled with anger and resentment at this disease. Since he is the one treating the disease, I somehow think he has control of my symptoms. And going in angry at him is not going to get either of us to a good place. My friend marveled at my ability to find laughter even in the midst of my own anger and pain and fatigue. I don’t know why, but I am thankful that God has given me laughter as a coping mechanism. Because I really am angry. I want my life back. I want my brain back. I want my pain to end. I want the fatigue to cease. I want my son’s pain to vanish. I WANT MY LIFE BACK. I am so sick of being in bed, of almost passing out at the grocery store, of looking at the piling laundry, of watching my husband have to cook the meals, of eyeing the pile of books I can’t comprehend. I know I am healing, but this month, it seems to be at slower than a snail’s pace. I’m Angry, Lonely, and Tired. And I can’t afford to waste my energy in the negative realm. So, I sat and jotted this down and sent it to my doctor in preparation for our meeting on Thursday. Thank you – for doing this job day and day out; figuring out how to heal us; how to help us. – for being my cheerleader when I am desperate and hopeless; for believing in me when i can’t believe in myself. – for helping to manage my pain. – for offering me a safe place to share my fear, my anxiety, my lowest moments. – for giving me hope. – for sharing your tenacity, your determination to mend this broken, wounded body. –...

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Posted on Jan 1, 2011 in Blog |

A year ago today, I experienced the first of three days of vertigo. It was not a good start to 2010. Some of the Bartonella was hanging out in my Eustachian tube causing inflammation and thus the vertigo. I remember waking up in bed, turning my head from the side to face forward to see what time it was. When I turned my head, the entire room came with it, reminding me of a very bad hangover I had in my twenties, or making me think I was on a topsy-turvy boat. Then, the nausea came. Luckily, I had an empty stomach, so there were no further consequences for that. When I turned my head, the walls moved with me; I had no solid grounding. I turned over to get up, thinking it would go away, or if I got upright, I could correct all this. I got turned over, my legs off the bed onto the floor. But I could not sit up. Every time I put my hand against the bed to push myself up to sit, I fell over to the side again as though being pulled flat against the bed. The more I struggled to sit up, the more disoriented I became. I could not get my bearings; I could not get stabilized. And of course, it was first thing in the morning . . . I had to pee! It’s the ‘little’ moments like these that create some of my most vivid memories of what Bartonella / Lyme disease does to a person. My husband is in the other room, not far away, but in this moment, I am so disoriented, so confused, I can’t even cry out for him. I am alone in a terrifying moment battling this disease. And at this moment, I have no idea if this condition is going to last a few more moments, an hour, or a day. This is the moment I want to freeze for those who DON’T suffer from Lyme disease. Because these moments happen any day, any time, for any length of time. That is the uncertainty of Lyme disease. On a daily basis....

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