Living in the present moment has become increasingly important to me in the past two years since I have had Lyme disease. I feel it is important for each person's story to be told. And this is mine...
Today, I felt the need to write out the story of how my life is with Lyme disease. Not to get sympathy or pity, not to offend or discourage, not to be dramatic or attention getting, but to simply state how I am. Maybe to create an understanding for those that I care about and feel that perhaps I have been neglecting. To tell you that I am not the person I once was. It could be Reiki, my increased interest in psychology,or all the other Lyme stories I have read that is spurring me to write. No matter...here it is.
Since April 2008, I have had Lyme disease. Only three short months after I moved to the Eastern shore of Maryland, there it was a perfect bull's eye on the left side of my back. I remember seeing it and my immediate concern. Growing up, my grandmother was always telling me the horror stories of Lyme. I would ultimately disregard her as I never encountered a tick whilst traipsing through the woods. In fact, the first time I found a tick on my body was March 2002, the last time I lived on the Delmarva peninsula. The Maryland Conservation Corps crew was out monitoring streams. I came home and a fat dog tick was attached to my neck.
This time it was just the remnant of the bite, the tick was long gone. An estimated range of 40 to 70 percent of people actually get the rash which usually shows up three days after the bite. Other signs of Lyme are fatigue, fever, aching joints and confusion. I found a doctor, scheduled an appointment and googled "Lyme disease". A little scary to read about the stages on the American Lyme Disease Foundation's website. It was the late stage with the neurological disorders that got to me and put a little fear in my head. Luckily, I had my appointment soon. My doctor (our first meeting) went well, she determined from the rash that I did indeed have Lyme and promptly put me on two weeks of amoxicillin. I did feel tired and achy during the next couple of weeks. My medicine routine became: saltines, water, pill, saltines and not eating anything for the next hour. Antibiotics and I do not like each other much and my side effects of the amoxicillin were severe nausea and puking. No follow-up with the doctor and I believe I was feeling better. I was cured, or so I thought.
Early August 2008, I awoke with sharp, jabbing pains throughout my body, especially through my joints. What could this possibly be? To the doctor again. Could I have Lyme again? No rash. Now was the time for blood tests: lupus, Lyme, rheumatoid arthritis, thyroid, etc. I received a note in the mail a week and a half later, "There is no obvious medical cause for your joint pains so far." Nice, huh? I know I was frustrated. But the pain only lasted four-five weeks and was gone. Perhaps it was blotted out by other happenings in my life - stress at work, emotional stress, etc.
April 1, 2009 - a bad day. many shocks and pains to all of my systems. Fever, achiness in joints and all over, stiff neck, headaches, leaden feeling. Back to the same doctor (when would I learn?) and again with the blood tests. Everything came back normal, but this time she scheduled an appointment with a rheumatologist (for July). Not satisfied, I found another practice with a nurse practitioner. She at least listened to what I had to say. I had started recording every thing I was feeling (health logs, you need them). Hot spots, knees swelling, chest pain, nausea, fatigue, the feeling that I was going to die from my body being racked with pain, stabs, shots, fuzziness, leaden feeling. Again the tests (along with Lyme) came back negative. The nurse practitioner set up an appointment with a neurologist and put me on another round amoxicillin until the test came back negative. During that time, I had the interesting sensation of white hot hands. My hands literally felt like they were burning at times and only being in the air conditioning would soothe them, funny that it stopped after I ended the amoxicillin.
To the specialists I go! The neurologist said that there was something wrong with my nerve endings and wanted me to have an MRI done (insurance didn't want to pay for that). Plus, my gut just did not agree with what he was saying. The rheumatologist conducted Lyme tests (again negative) and told me to excercise more. Still my pain, aches, nausea, fever, fatigue, hot spots continued. Echinacea and Reiki, these were the two things I could rely on. I knew that I had to help my immune system and echinacea is key. And I believe that if I did not have Reiki, I may have not gotten through the pain and all of the stress it caused and that magnified it. Finally, February this year things were subsiding and the Lyme settled down.
July it came back and is still here. A constant presence that I have to learn to accept, to understand, to even love. Lyme is part of who I am. How I feel from day to day varies. Most of the time there is always fatigue. I think this is the ultimate frustration, as I cannot do the things I want to do. Hiking - its been since June. You think it would be okay, but even three miles tires me out and I need to have the time to nap afterward. I think about it, yet it is very hard to do. When your physical energy is zapped that in turn decreases your mental energy. I don't go out, especially at night. If there is energy or if I have time to gather my energy I can go out during the day. It's all about mentally preparing myself.
The non-attachments. I used to call people all of the time, be the one who would remember your birthday and anniversary, email to see how you are, not so much now. Yes, I have drawn inward, even more than I used to. I have to heal. And in order to heal, I have reduced or tried to reduce stress. Not worrying about having to call people eases that stress. And if you don't call me, I figure you are just busy and that is life. I still care though.
Lack of focus. This comes and goes as it pleases. When I do need focus and its not there, along comes the anger. I get frustrated with myself. In fact, I am frustrated with my inabilities all of the time now. But this one really pisses me off. I know how competent I am, how good I am at what I do and when I cannot perform to my standards it digs deep.
Anger, anger, anger. Being tired most of the time does not fit in well in dealing with circumstances that would normally irritate you. I have sharper, more biting comments. My mind is saying, "Dude, I am tired and want to get things done in a timely manner, do not bother me with this stupid sh*t." I have gotten to a point where most times I can watch the anger from the sidelines. It is like watching a three year-old have a temper tantrum. It just needs to work itself out. In turn, I have lessened my tendency to get angry or irritated because of this awareness.
Trying to maintain positive. It's hard thing to do when you can't do things that you used to. It's adjusting your lifestyle. I have to take greater joy in the things I can still do: bake, sew, read, write, sleep (I have been told I have to get 8 or more hours of sleep!), watch movies, make herbal remedies, take photos. It's really hard to take care oneself, we always want to help others. Gentleness.
One of the bright sides of drawing inward and healing is the awareness it brings. I am listening to my body. My body knows it has Lyme disease and knows it has to be gentle with itself. Any bad outside influences can cause a shock to the system. That is where the non-attachment comes in. "You are the sky and everything else is just the weather."
At the end of September, I met with an herbalist. A simply wonderful, understanding woman who knew that I needed healing. She didn't think I was crazy for thinking that I have chronic Lyme disease. She said we are going to get you better. Delight! To begin, we build the foundation for the immune system - the diet. I am so much more aware of what goes in (and on) my body. More green things! And now the hard part, less dairy and gluten. 1. Hard to wean oneself away from those food items. 2. Hard to find products without those ingredients. Why? Lyme disease makes you sensitive to all kinds of influences, i.e. food allergies.
My Lyme-fighting companions: Teasel Root, Echinacea, Skullcap, Reiki, omega-3 fatty acids, greens, Garlic, Oregon Grape, Sarsaparilla, Reishi. It is good to know these beings are on my side!
I know that I may never be cured, that Lyme will be with me for the rest of my life. At times I want to cry when I think about that statement. I have to accept it. It is hard to remind onseself everyday "you are sick." I have to be grateful that I am capable of doing what I do. There are so many people out there with Lyme that is completely debilitating leaving them helpless in bed, without a livelihood, feeling alone. I know that despite my detraction inward, the past however many months, that I love and am not alone.
Lyme disease is a great mimic comprised of bacterial Borrelia sphirochetes. For every person it is different. Some people are lucky to be diagnosed by the blood tests and are given proper treatment. Others suffer for years not knowing what they have that ails them. Be careful out there, dress properly for the outdoors, listen to your body (it knows when something is wrong) and learn more about Lyme.
As for today, my joints ache from my ankles, knees, hips up to my shoulders. It's a constant sharp ache. Ick, yes, but also it means that the herbal remedies are working with my body to fight off those sphirochetes. Hooray!
Since April 2008, I have had Lyme disease. Only three short months after I moved to the Eastern shore of Maryland, there it was a perfect bull's eye on the left side of my back. I remember seeing it and my immediate concern. Growing up, my grandmother was always telling me the horror stories of Lyme. I would ultimately disregard her as I never encountered a tick whilst traipsing through the woods. In fact, the first time I found a tick on my body was March 2002, the last time I lived on the Delmarva peninsula. The Maryland Conservation Corps crew was out monitoring streams. I came home and a fat dog tick was attached to my neck.
This time it was just the remnant of the bite, the tick was long gone. An estimated range of 40 to 70 percent of people actually get the rash which usually shows up three days after the bite. Other signs of Lyme are fatigue, fever, aching joints and confusion. I found a doctor, scheduled an appointment and googled "Lyme disease". A little scary to read about the stages on the American Lyme Disease Foundation's website. It was the late stage with the neurological disorders that got to me and put a little fear in my head. Luckily, I had my appointment soon. My doctor (our first meeting) went well, she determined from the rash that I did indeed have Lyme and promptly put me on two weeks of amoxicillin. I did feel tired and achy during the next couple of weeks. My medicine routine became: saltines, water, pill, saltines and not eating anything for the next hour. Antibiotics and I do not like each other much and my side effects of the amoxicillin were severe nausea and puking. No follow-up with the doctor and I believe I was feeling better. I was cured, or so I thought.
Early August 2008, I awoke with sharp, jabbing pains throughout my body, especially through my joints. What could this possibly be? To the doctor again. Could I have Lyme again? No rash. Now was the time for blood tests: lupus, Lyme, rheumatoid arthritis, thyroid, etc. I received a note in the mail a week and a half later, "There is no obvious medical cause for your joint pains so far." Nice, huh? I know I was frustrated. But the pain only lasted four-five weeks and was gone. Perhaps it was blotted out by other happenings in my life - stress at work, emotional stress, etc.
April 1, 2009 - a bad day. many shocks and pains to all of my systems. Fever, achiness in joints and all over, stiff neck, headaches, leaden feeling. Back to the same doctor (when would I learn?) and again with the blood tests. Everything came back normal, but this time she scheduled an appointment with a rheumatologist (for July). Not satisfied, I found another practice with a nurse practitioner. She at least listened to what I had to say. I had started recording every thing I was feeling (health logs, you need them). Hot spots, knees swelling, chest pain, nausea, fatigue, the feeling that I was going to die from my body being racked with pain, stabs, shots, fuzziness, leaden feeling. Again the tests (along with Lyme) came back negative. The nurse practitioner set up an appointment with a neurologist and put me on another round amoxicillin until the test came back negative. During that time, I had the interesting sensation of white hot hands. My hands literally felt like they were burning at times and only being in the air conditioning would soothe them, funny that it stopped after I ended the amoxicillin.
To the specialists I go! The neurologist said that there was something wrong with my nerve endings and wanted me to have an MRI done (insurance didn't want to pay for that). Plus, my gut just did not agree with what he was saying. The rheumatologist conducted Lyme tests (again negative) and told me to excercise more. Still my pain, aches, nausea, fever, fatigue, hot spots continued. Echinacea and Reiki, these were the two things I could rely on. I knew that I had to help my immune system and echinacea is key. And I believe that if I did not have Reiki, I may have not gotten through the pain and all of the stress it caused and that magnified it. Finally, February this year things were subsiding and the Lyme settled down.
July it came back and is still here. A constant presence that I have to learn to accept, to understand, to even love. Lyme is part of who I am. How I feel from day to day varies. Most of the time there is always fatigue. I think this is the ultimate frustration, as I cannot do the things I want to do. Hiking - its been since June. You think it would be okay, but even three miles tires me out and I need to have the time to nap afterward. I think about it, yet it is very hard to do. When your physical energy is zapped that in turn decreases your mental energy. I don't go out, especially at night. If there is energy or if I have time to gather my energy I can go out during the day. It's all about mentally preparing myself.
The non-attachments. I used to call people all of the time, be the one who would remember your birthday and anniversary, email to see how you are, not so much now. Yes, I have drawn inward, even more than I used to. I have to heal. And in order to heal, I have reduced or tried to reduce stress. Not worrying about having to call people eases that stress. And if you don't call me, I figure you are just busy and that is life. I still care though.
Lack of focus. This comes and goes as it pleases. When I do need focus and its not there, along comes the anger. I get frustrated with myself. In fact, I am frustrated with my inabilities all of the time now. But this one really pisses me off. I know how competent I am, how good I am at what I do and when I cannot perform to my standards it digs deep.
Anger, anger, anger. Being tired most of the time does not fit in well in dealing with circumstances that would normally irritate you. I have sharper, more biting comments. My mind is saying, "Dude, I am tired and want to get things done in a timely manner, do not bother me with this stupid sh*t." I have gotten to a point where most times I can watch the anger from the sidelines. It is like watching a three year-old have a temper tantrum. It just needs to work itself out. In turn, I have lessened my tendency to get angry or irritated because of this awareness.
Trying to maintain positive. It's hard thing to do when you can't do things that you used to. It's adjusting your lifestyle. I have to take greater joy in the things I can still do: bake, sew, read, write, sleep (I have been told I have to get 8 or more hours of sleep!), watch movies, make herbal remedies, take photos. It's really hard to take care oneself, we always want to help others. Gentleness.
One of the bright sides of drawing inward and healing is the awareness it brings. I am listening to my body. My body knows it has Lyme disease and knows it has to be gentle with itself. Any bad outside influences can cause a shock to the system. That is where the non-attachment comes in. "You are the sky and everything else is just the weather."
At the end of September, I met with an herbalist. A simply wonderful, understanding woman who knew that I needed healing. She didn't think I was crazy for thinking that I have chronic Lyme disease. She said we are going to get you better. Delight! To begin, we build the foundation for the immune system - the diet. I am so much more aware of what goes in (and on) my body. More green things! And now the hard part, less dairy and gluten. 1. Hard to wean oneself away from those food items. 2. Hard to find products without those ingredients. Why? Lyme disease makes you sensitive to all kinds of influences, i.e. food allergies.
My Lyme-fighting companions: Teasel Root, Echinacea, Skullcap, Reiki, omega-3 fatty acids, greens, Garlic, Oregon Grape, Sarsaparilla, Reishi. It is good to know these beings are on my side!
I know that I may never be cured, that Lyme will be with me for the rest of my life. At times I want to cry when I think about that statement. I have to accept it. It is hard to remind onseself everyday "you are sick." I have to be grateful that I am capable of doing what I do. There are so many people out there with Lyme that is completely debilitating leaving them helpless in bed, without a livelihood, feeling alone. I know that despite my detraction inward, the past however many months, that I love and am not alone.
Lyme disease is a great mimic comprised of bacterial Borrelia sphirochetes. For every person it is different. Some people are lucky to be diagnosed by the blood tests and are given proper treatment. Others suffer for years not knowing what they have that ails them. Be careful out there, dress properly for the outdoors, listen to your body (it knows when something is wrong) and learn more about Lyme.
As for today, my joints ache from my ankles, knees, hips up to my shoulders. It's a constant sharp ache. Ick, yes, but also it means that the herbal remedies are working with my body to fight off those sphirochetes. Hooray!
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