The thing about being sick for a long time, is that the world around you doesn't stop. People still live in forward motion, while the sick person is at a stand still. It's like being plucked from the earth and taken off to some other place where you hang out in limbo hopes of returning to good health. Parents and children grow older and along with that growth are positives and negatives. The older children become, the more difficult the problems and consequences. Aging parents are more dependent, their minds become slower and duller. The house is older, and things need replacement, the dog is older and more feeble.
I hate to jinx myself, but I think my new LLMD is making a difference. I was dreading the holidays, imagining myself, laying on the couch for the 3rd year, watching my family do all the food shopping and preparation of dinners. I envisioned myself making my way to the dinner table, again, my head pounding and feeling like I had the flu; my muscles aching and the room spinning. I am not symptom free by any stretch of the imagination, but I wasn't on the couch this Christmas, I was able to help in dinner preps and be a part of the laughter and even a few arguments. I even made it to church on Christmas Eve. I haven't been for the last 2 Christmases, so I see it as a mile stone. I took my afternoon naps, which refueled me enough to make through the day.
I feel like I am waking up from a coma. Everything seems different to me. The lessons I have learned about myself, my relationships, my family, the world as I now see it are immeasurable. I feel like I am figuring it out all over again. Perhaps I never had it figured out to begin with.
For years I have been meeting a dear friend at a restaurant a little over an hour away. We used to meet once maybe twice a year for our chat sessions. She used to be my neighbor and she has grown into one of my dearest and most cherished friends. Through out this illness she has sincerely tried to keep up with the constant drug changes and list of ever changing symptoms as the bacteria in my bloodstream is being killed off. I haven't been able to meet her at our designated location in over 2 years.
Well, yesterday I was able to meet her! We put together a last minute plan to meet and I did it. We had so much to talk about....so much to confide in each other, catching up on our kids, our husbands, and how life is changing for us all. The lovely people at the restaurant we frequent for these get togethers, allowed us to sit in the booth for 7 hours and talk and laugh and be ourselves. The time flew by. I didn't have to leave early, and I was able to make the drive home....tired but feeling fulfilled.
I actually felt like my old self in many ways, but also changed; older....more worn out by the disease, and the realizations of the positive and negative changes in the growth of my children, the duller mind and more arthritic ravashes of my aging mother, the house is older, needs more repairs and the dog sleeps most of the day at over age 12; life is moving forward for us.
I hope I can stay well enough to enjoy the ride.
Thursday, December 31, 2009
Friday, December 18, 2009
Approaching Christmas, The American Dream And Planning For A Rainy Day
This Christmas will be far different than any other Christmas before. There will be no gifts for the first time ever. I haven't worked in over 2 years. We went from being a 2 income family to a 1 income family inside of 4 months. We went from living the American Dream, to living the American Nightmare. Fortunately my husband makes a decent salary and we have been able to stay ahead of our bills, college tuitions and lease car payments. His health is suffering due to the stress, but we are still living in our house and able to keep ahead of it. Although I do feel my health is improving with my new LLMD, I still cannot make any commitments given I am still on heavy doses of antibiotics in order to keep the Lyme and co-infections at bay.
There are no frills here. We never go out to eat anymore. We haven't bought any new clothes for a very long time. We are probably going to have to sell our house, if this real estate market would start to turn itself around; but we might not be able to wait that long. We need a new furnace, and there is no extra money. So this year we have had to make a choice, the kind of choice that so many Americans make. There can't be Christmas gifts and a furnace. The furnace prevails.
I was raised in a home where both my parents worked. Although we didn't live lavishly, we lived pretty well. We had more than alot of people. I remember my parents telling my sister and me that if we wanted to live in the standard which we were accustomed, we should get an education and make sure we were employable. So we did. We have shared the same knowledge with our own children. Get an education, get a good job, and you will be successful. Always plan for a rainy day, however.
Joanna Kerns who played the mother on the famed show 'Growing Pains' has a daughter Ashley who graduated from Law School and was working as an entertainment lawyer. Misdiagnosed since childhood, she has given up her career due to Lyme Disease. Actress Tracey Silver, who was started her career in the 1990's simply fell into oblivion for 12 years as she battled Lyme Disease. Again, two American Dreams snuffed out by a disease that is unrecognized and misunderstood.
The thing about being successful, and planning for a rainy day, is that you really never think it will start raining, keep raining and not let up. I guess I never did. As we approach this Christmas I have to take pause. A Christmas with no gifts is a benchmark for me, in this journey called life. This is really serious and can happen to anyone. It's really happening to me.
There are no frills here. We never go out to eat anymore. We haven't bought any new clothes for a very long time. We are probably going to have to sell our house, if this real estate market would start to turn itself around; but we might not be able to wait that long. We need a new furnace, and there is no extra money. So this year we have had to make a choice, the kind of choice that so many Americans make. There can't be Christmas gifts and a furnace. The furnace prevails.
I was raised in a home where both my parents worked. Although we didn't live lavishly, we lived pretty well. We had more than alot of people. I remember my parents telling my sister and me that if we wanted to live in the standard which we were accustomed, we should get an education and make sure we were employable. So we did. We have shared the same knowledge with our own children. Get an education, get a good job, and you will be successful. Always plan for a rainy day, however.
Joanna Kerns who played the mother on the famed show 'Growing Pains' has a daughter Ashley who graduated from Law School and was working as an entertainment lawyer. Misdiagnosed since childhood, she has given up her career due to Lyme Disease. Actress Tracey Silver, who was started her career in the 1990's simply fell into oblivion for 12 years as she battled Lyme Disease. Again, two American Dreams snuffed out by a disease that is unrecognized and misunderstood.
The thing about being successful, and planning for a rainy day, is that you really never think it will start raining, keep raining and not let up. I guess I never did. As we approach this Christmas I have to take pause. A Christmas with no gifts is a benchmark for me, in this journey called life. This is really serious and can happen to anyone. It's really happening to me.
Tuesday, December 15, 2009
Cruising in the 6 Speed With Bruce
Yesterday was a beautiful day. I had to run a couple of small errands, and my husband had taken my car, so I used his. He car is a 6 speed stick shift and goes pretttty fast. The sun was shining so I opened the sun roof. I started flipping through the gears and decided to see what was on the radio. I haven't listened to music in a really long time. My left cranial nerve, damaged by Lyme just can't tolerate it. The radio was just starting to play "Glory Days" by Bruce Springsteen and the E Street Band. One of my all time favorite bands. As the music got going and I was throwing the shifter through the gears, suddenly I started singing and I was one the wide open road....the sun shining on my face through the sun roof, the warmth of the heater blowing on me and greatness of Bruce and his guys blasting through the speakers. I forgot about the pain in my back and how tired I was for the entirety of that song. I was having a really good time!
I came home and took long nap, but it was so worth it.
I came home and took long nap, but it was so worth it.
Sunday, December 13, 2009
The High Cost of Being Sick
The Center for Disease Control (CDC) and the Infectious Disease Society of America (IDSA) govern the treatment protocols for Infectious Disease. Because neither one of these organizations recognizes Chronic Lyme Disease, they offer no treatment beyond a few months of antibiotics for Lyme Disease. To them it doesn't exist. That, coupled along with the fact that Lyme Disease is a mult-systemic disease causing patients to present symptoms in a myriad of ways, many many patients like myself, go mis or undiagnosed for sometimes years. If you factor in that the standard CDC Western Blot Lyme Test is only accurate about 50% of the time it becomes clearer why people are sick without a diagnosis.
There is a group of courageous clinicians who have independently taken on Chronic Lyme Disease. They belong to an organization called the International Lyme And Associated Disease Society (ILADS). Because again, neither the CDC or the IDSA are involved, these physicians use treatments which are completely experimental in nature and are based on past successes with medications and personal perferences. It leaves alot to interpretation. They use terms, like "Well, I guess we could try Amoxicillin for a while" or "I've had pretty good results with Biaxin".
When I personally heard words like that for the the first time, I knew I was in unfamiliar territory. I was raised in an arena where if you had a sickness you went to the doctor, they gave you the medication and viola....you were better. End of sickness...life goes on. In these appointments, it's clear that nothing is clear. Lyme Literate MD's move antibiotics around like chess pieces, trying this one and adding on that one, and seeing if there is any result. If you have an herx, and feel worse, they are pleased, but if you don't feel worse, that doesn't mean the drug isn't working for you either. It's a maze, and if you happen to find your way out of it after walking around and around in circles for a while, you are one of the few and very lucky ones.
In many ways I am one of the lucky ones. My husband's insurance pays 60% of my medical visits and most of the medications are covered by a copay. Most LLMD's have patients on a multitude of vitamins and supplement to support their other organs during treatment, there is alot of out of pocket in that regard. The bulk of patients are not in my situation. Many do not have out of network coverage as part of their health care insurance. Some of the medications may be covered by a copay but not all, and because so many people have been to countless doctors in an effort to find out what was really wrong with them, they have already spent a fortune. The cost of IV therapy for Lyme Disease is staggering. If insurance companies added up what they have spent on patients trying to chase down a Lyme diagnosis, they would be blown away by the unnecessary money spent, which is probably literally in the millions.
We need a cure. But before we can get a cure, we need funded reserach and adequate testing. There is no way out of this maze without those components. There is a film out, which I recommend to anyone who has interest in this disease. It serves are a primer on the layers and controversy surrounding Chronic Lyme. It's called Under Our Skin, and can be found at any library or video store.
The controvery rages on.
There is a group of courageous clinicians who have independently taken on Chronic Lyme Disease. They belong to an organization called the International Lyme And Associated Disease Society (ILADS). Because again, neither the CDC or the IDSA are involved, these physicians use treatments which are completely experimental in nature and are based on past successes with medications and personal perferences. It leaves alot to interpretation. They use terms, like "Well, I guess we could try Amoxicillin for a while" or "I've had pretty good results with Biaxin".
When I personally heard words like that for the the first time, I knew I was in unfamiliar territory. I was raised in an arena where if you had a sickness you went to the doctor, they gave you the medication and viola....you were better. End of sickness...life goes on. In these appointments, it's clear that nothing is clear. Lyme Literate MD's move antibiotics around like chess pieces, trying this one and adding on that one, and seeing if there is any result. If you have an herx, and feel worse, they are pleased, but if you don't feel worse, that doesn't mean the drug isn't working for you either. It's a maze, and if you happen to find your way out of it after walking around and around in circles for a while, you are one of the few and very lucky ones.
In many ways I am one of the lucky ones. My husband's insurance pays 60% of my medical visits and most of the medications are covered by a copay. Most LLMD's have patients on a multitude of vitamins and supplement to support their other organs during treatment, there is alot of out of pocket in that regard. The bulk of patients are not in my situation. Many do not have out of network coverage as part of their health care insurance. Some of the medications may be covered by a copay but not all, and because so many people have been to countless doctors in an effort to find out what was really wrong with them, they have already spent a fortune. The cost of IV therapy for Lyme Disease is staggering. If insurance companies added up what they have spent on patients trying to chase down a Lyme diagnosis, they would be blown away by the unnecessary money spent, which is probably literally in the millions.
We need a cure. But before we can get a cure, we need funded reserach and adequate testing. There is no way out of this maze without those components. There is a film out, which I recommend to anyone who has interest in this disease. It serves are a primer on the layers and controversy surrounding Chronic Lyme. It's called Under Our Skin, and can be found at any library or video store.
The controvery rages on.
Wednesday, December 9, 2009
The Monster
I feel like I am being crushed by this disease. Like it's this huge monster that chases me; occasionally I am able to sneak around the corner and get a few days or hours of relief but then it finds me again and is right on my tail. I can't fun fast enough to get away from it. It's smart and mean and deliberate and it is knocking the life out of me.
I am still sick with this URI. It's been over a week now, and the Dr. says it could last 2 weeks. My husband is now sick with it and is upstairs in bed. I haven't purchased a Xmas Card or a gift for anyone. It's snowing today in the northeast and my slope of a driveway is completely impassable. I feel like a prisoner in this house.
I look out the sliding glass door from my family room, and see the snow covering the trees in the woods. I have watched the seasons change from spring to summer, to fall, to winter from that slider for too many years now, feeling sick. The winter is the worst. I remember thinking last winter that possibly this year we would be somewhere else for Xmas...maybe somewhere warm with our family. I also think about the many many winters, my husband and I would take our kids skiing for the week in between Xmas and New Years. They learned to ski and they still love it today. Now I feel like I can hardly make it the mailbox let alone down a slope with skis strapped to my feet.
My 94 year old mother and her dear friend were kind enough to go to the store for me yesterday. They brought over some chicken soup she had made and some groceries. At 94 should she be doing this for me? Shouldn't it be the other way around? I know she is afraid for me. She doesn't have the power of the internet and remains somewhat in the dark about infectious disease and the potential ramifications that Lyme can have. She is eternally hopeful. She is my mother no matter how badly she feels with her arthritis ridden body. She wants to help.
I missed another outing with friends this week. I haven't seen one of these friends in over a year. Too sick to go. It makes me sad when milestones like this happen and I am again, absent.
Sometimes I feel like I am fighting a fight which is unwinable. My Dr's are the best in the field...they don't have the CDC or the NIH behind them in treatment protocols. They do the best they can, given what little research has been done independently. Some days, I feel like it would be easier to just give up, stop taking all these antibiotics and let Lyme Disease takes it course with me. It would ultimately mean a cruel erosion of my nervous system, early onset Parkinson's or Alzheimer's, ALS or MS and eventually the organs of my body. That kind of death scares me so I guess I must just keep running from the monster.
I am still sick with this URI. It's been over a week now, and the Dr. says it could last 2 weeks. My husband is now sick with it and is upstairs in bed. I haven't purchased a Xmas Card or a gift for anyone. It's snowing today in the northeast and my slope of a driveway is completely impassable. I feel like a prisoner in this house.
I look out the sliding glass door from my family room, and see the snow covering the trees in the woods. I have watched the seasons change from spring to summer, to fall, to winter from that slider for too many years now, feeling sick. The winter is the worst. I remember thinking last winter that possibly this year we would be somewhere else for Xmas...maybe somewhere warm with our family. I also think about the many many winters, my husband and I would take our kids skiing for the week in between Xmas and New Years. They learned to ski and they still love it today. Now I feel like I can hardly make it the mailbox let alone down a slope with skis strapped to my feet.
My 94 year old mother and her dear friend were kind enough to go to the store for me yesterday. They brought over some chicken soup she had made and some groceries. At 94 should she be doing this for me? Shouldn't it be the other way around? I know she is afraid for me. She doesn't have the power of the internet and remains somewhat in the dark about infectious disease and the potential ramifications that Lyme can have. She is eternally hopeful. She is my mother no matter how badly she feels with her arthritis ridden body. She wants to help.
I missed another outing with friends this week. I haven't seen one of these friends in over a year. Too sick to go. It makes me sad when milestones like this happen and I am again, absent.
Sometimes I feel like I am fighting a fight which is unwinable. My Dr's are the best in the field...they don't have the CDC or the NIH behind them in treatment protocols. They do the best they can, given what little research has been done independently. Some days, I feel like it would be easier to just give up, stop taking all these antibiotics and let Lyme Disease takes it course with me. It would ultimately mean a cruel erosion of my nervous system, early onset Parkinson's or Alzheimer's, ALS or MS and eventually the organs of my body. That kind of death scares me so I guess I must just keep running from the monster.
Friday, December 4, 2009
Sick On Top Of Sick
I must have picked up some kind of virus. I have been sick all week with a URI. It's a bad one, low grade fever, chills, chest congestion, and a sore throat like I have never had. I fought it all week and today I hit the wall and ended up in bed, with the vaporizer on. I called the doctor and they say a virus and it has to run it's course.
I haven't had a run of the mill sickness in two years. I take so many vitamins and supplements for to Lyme Disease that I thought my immune system was impenetrable. I guess not. I am concerned that I am really messing with my immune system with antibiotics, but I have no choice being that as soon as I go off them, the Lyme symptoms come back. I am hoping that after this rotation that I am on, I might be able to back off a little. Probably not. I just read on a Lyme forum I belong to of another Lyme patient who relapsed after being off antibiotics for 5 months.
I am pretty tired of feeling unwell. People take for granted their health. I know I did. For me it's a distant memory of what it's like to sleep a full night, wake up refreshed, hop out of bed, put on a pot of coffee, take a shower and head out to work. My mornings are usually more like a lifting of the fog, because many nights I have to take something to help me sleep. After I am up a while, I take an assessment of how I am feeling. It's never more that 70% well..and that's a really good day. Fatigue, and body aches are usually my two demons, depending on how they decide to plaque on a given day.
I feel especially bad today, given I have Lyme, co infections and this nasty URI on top of everything. I wish I could shut it off like a switch, just make it stop for a week. It's just so exhuasting to always be sick.
I haven't had a run of the mill sickness in two years. I take so many vitamins and supplements for to Lyme Disease that I thought my immune system was impenetrable. I guess not. I am concerned that I am really messing with my immune system with antibiotics, but I have no choice being that as soon as I go off them, the Lyme symptoms come back. I am hoping that after this rotation that I am on, I might be able to back off a little. Probably not. I just read on a Lyme forum I belong to of another Lyme patient who relapsed after being off antibiotics for 5 months.
I am pretty tired of feeling unwell. People take for granted their health. I know I did. For me it's a distant memory of what it's like to sleep a full night, wake up refreshed, hop out of bed, put on a pot of coffee, take a shower and head out to work. My mornings are usually more like a lifting of the fog, because many nights I have to take something to help me sleep. After I am up a while, I take an assessment of how I am feeling. It's never more that 70% well..and that's a really good day. Fatigue, and body aches are usually my two demons, depending on how they decide to plaque on a given day.
I feel especially bad today, given I have Lyme, co infections and this nasty URI on top of everything. I wish I could shut it off like a switch, just make it stop for a week. It's just so exhuasting to always be sick.
Wednesday, December 2, 2009
The Food Network
Like all Lyme patients I probably watch my fair share of television. I am not one to watch during the day, but I confess I do watch at night. Truly today's piece of technology called "TiVo", is a Lyme Patients haven. How wonderful it is to record all your favorite shows indefinitely and watch them whenever you want! When we first got this new fangled gadget my husband had to explain to how it worked over and over again. It was inconceivable to me that I could actually be watching a show when other shows on other channels were recording at the same time!
TiVo has kept me occupied quite nicely during the evenings of the last two years. Some of my favorite shows are on the Food Network. I think Bobby Flay is really cute, (if that matters) and has great cooking ideas....just love that "Throwdown With Bobby Flay". Someday if I get well, I have visions of us buying a monstrous size RV and roaming the USA tracking down all the 'awesome' cooks and their eateries on Throwdown. "Challenge" keeps me involved; some of those beautiful cakes they make are more like pieces of art than food. It really amazes me. There is a show called "Chopped" where 4 chefs go head to head in a cooking competition that involves preparing the secret ingredients in a basket for 3 consecutive courses. I am always blown way by the dishes they come up with mixing ingredients that basically make no sense together. Then there is Ina Garten, aka, "The Barefoot Contessa", with her sheik airy TV set kitchen in the Hamptons. Almost everything she makes, starts with a "a half pound of butter", so I could rarely ever make one of her recipes, but none the less, she entertains me. She has a publisher come for breakfast and has made fresh Banana Sour Cream Pancakes, fresh squeezed juices and gorgeous home made muffins. Friends stop by and she whips up homemade Profiteroles (used to be my favorite desert, ever) with such ease. She seems very calm and very at ease in the kitchen.
Strange how I have been lured into the Food Network. It's like entering this magical world of food and people who have day after day, continue to produce the most interesting and seemingly tasteful dishes. Everything is so colorful and beautiful and happy. I guess in many ways it pleases what senses I have left and brings some happiness for a half hour or hour. There this is no plot line, no protagonist or underdog. It's just about cooking. Pretty simple. Lyme has made my life so complicated. The Food Network is simple joy, no strings attached for just a little while.
Sometimes, I need just to have a "little while".
TiVo has kept me occupied quite nicely during the evenings of the last two years. Some of my favorite shows are on the Food Network. I think Bobby Flay is really cute, (if that matters) and has great cooking ideas....just love that "Throwdown With Bobby Flay". Someday if I get well, I have visions of us buying a monstrous size RV and roaming the USA tracking down all the 'awesome' cooks and their eateries on Throwdown. "Challenge" keeps me involved; some of those beautiful cakes they make are more like pieces of art than food. It really amazes me. There is a show called "Chopped" where 4 chefs go head to head in a cooking competition that involves preparing the secret ingredients in a basket for 3 consecutive courses. I am always blown way by the dishes they come up with mixing ingredients that basically make no sense together. Then there is Ina Garten, aka, "The Barefoot Contessa", with her sheik airy TV set kitchen in the Hamptons. Almost everything she makes, starts with a "a half pound of butter", so I could rarely ever make one of her recipes, but none the less, she entertains me. She has a publisher come for breakfast and has made fresh Banana Sour Cream Pancakes, fresh squeezed juices and gorgeous home made muffins. Friends stop by and she whips up homemade Profiteroles (used to be my favorite desert, ever) with such ease. She seems very calm and very at ease in the kitchen.
Strange how I have been lured into the Food Network. It's like entering this magical world of food and people who have day after day, continue to produce the most interesting and seemingly tasteful dishes. Everything is so colorful and beautiful and happy. I guess in many ways it pleases what senses I have left and brings some happiness for a half hour or hour. There this is no plot line, no protagonist or underdog. It's just about cooking. Pretty simple. Lyme has made my life so complicated. The Food Network is simple joy, no strings attached for just a little while.
Sometimes, I need just to have a "little while".
Monday, November 30, 2009
What Happens When The Mother Gets Sick?
My husband's mother died from Stage 4 Breast Cancer when he was 18 years old. She was 54. I never knew her, but I have heard him talk about her over the years and seen many pictures. They are the typical pictures from that era; black and whites of family picnics, outings to parks with her, his dad and his brothers along with his cousins aunts and uncles. He has told us about her kind and gentle soul, her loving spirit and huge heart toward everyone who crossed her path.
He also speaks very frankly about how his family essentially fell apart after her death. His Dad did the best he could to handle it all but eventually remarried and his new wife's life became his. Gone were the family gatherings, and gone from my husband's life was the intuition and spirit with which mothers subconsciously guide their children. He talks about being lost after her death ...leaving college....then finally returning back. Personally I know we have missed having her as a grandmother to our children and a presence in our lives.
I have been sick for over 2 years and who knows how long prior to diagnosis. It's along time to be on the sidelines, and try to coach from afar. Anyone close to me knows that I have worried how this 2 year gap in attention will effect my children. My children are not young; they are 23 and 21. But they are still my children and as we know, in many cases these days, 30 is the new 20, so it stands to reason my worrying maybe warranted.
I have been rendered unable to work due to this disease. I lost a Photography business that I owned for over 20 years. I lost all the camaraderie and importance that came along with that job along with the huge creative outlet it brought to my life. I have lost relationships and the ability to attend social events due to this illness. I have lost alot more than I can say due to being sick, but clearly the truest loss to me is the distance this disease has put between myself and my children.
Don't get me wrong. We all try. They try to be patient and ask how I am feeling. I try not to talk about it too much because their lives are full, and I am truthfully more interested in hearing what they are doing, rather then repeating the same list of Lyme symptoms over again. They know when I say "good days, and bad days" that nothing has really changed. We got through the motions in that regard.
I know having a sick mom has affected them. How could it not? It probably will affect them for life, but I do hope that there will be a day when they will speak of this time as "I remember when my Mom had Lyme", not that "My Mom has had Lyme for 30 years."
So as I think of my children today, and the days I tied their shoes, cleaned their boo boos, listened to their heartache and wiped away their tears, my heart is sad. For two years I haven't been much help, I regret, for I am the one with doing the suffering. The equation is out of wack, and it makes me most uncomfortable.
He also speaks very frankly about how his family essentially fell apart after her death. His Dad did the best he could to handle it all but eventually remarried and his new wife's life became his. Gone were the family gatherings, and gone from my husband's life was the intuition and spirit with which mothers subconsciously guide their children. He talks about being lost after her death ...leaving college....then finally returning back. Personally I know we have missed having her as a grandmother to our children and a presence in our lives.
I have been sick for over 2 years and who knows how long prior to diagnosis. It's along time to be on the sidelines, and try to coach from afar. Anyone close to me knows that I have worried how this 2 year gap in attention will effect my children. My children are not young; they are 23 and 21. But they are still my children and as we know, in many cases these days, 30 is the new 20, so it stands to reason my worrying maybe warranted.
I have been rendered unable to work due to this disease. I lost a Photography business that I owned for over 20 years. I lost all the camaraderie and importance that came along with that job along with the huge creative outlet it brought to my life. I have lost relationships and the ability to attend social events due to this illness. I have lost alot more than I can say due to being sick, but clearly the truest loss to me is the distance this disease has put between myself and my children.
Don't get me wrong. We all try. They try to be patient and ask how I am feeling. I try not to talk about it too much because their lives are full, and I am truthfully more interested in hearing what they are doing, rather then repeating the same list of Lyme symptoms over again. They know when I say "good days, and bad days" that nothing has really changed. We got through the motions in that regard.
I know having a sick mom has affected them. How could it not? It probably will affect them for life, but I do hope that there will be a day when they will speak of this time as "I remember when my Mom had Lyme", not that "My Mom has had Lyme for 30 years."
So as I think of my children today, and the days I tied their shoes, cleaned their boo boos, listened to their heartache and wiped away their tears, my heart is sad. For two years I haven't been much help, I regret, for I am the one with doing the suffering. The equation is out of wack, and it makes me most uncomfortable.
Thursday, November 26, 2009
Giving Thanks
Today is Thanksgiving.
Most of the time in the midst of this storm I feel there it is little to be thankful for. There have been times, when things are on the upswing and I feel the worst is behind me when I have reflected and been grateful for how far I have come. Those times have been few and short lived in this battle.
Today I will simply say that I am ever so grateful for my eternally patient and loyal husband, who without question has stayed by my side, held my hand, listened to me cry and continues to help me ferret out an answer and end to this nightmare. I have said before that if the situation had been reversed I am not sure I could have shown the true colors he has shown.
I am thankful for my family and friends who have stuck around, trying their best to understand a disease and a situation which is almost impossible to understand.
I am grateful for the wonderful people of my church have been so kind to me, delivering meals, coming by for visits, sending cards and keeping me on their prayer list for almost two years.
I am thankful for the fellow lyme patients I have met along this journey. These are people I would otherwise never have known. They are truly some the bravest people I have had the privilege of meeting.
I am grateful that we have somehow been able to stay financially afloat these last two years without my salary. I am not sure how much longer we can hold on, but I am grateful that I have always had a warm house, comfortable bed and food in the refrigerator.
Happy Thanksgiving.
Most of the time in the midst of this storm I feel there it is little to be thankful for. There have been times, when things are on the upswing and I feel the worst is behind me when I have reflected and been grateful for how far I have come. Those times have been few and short lived in this battle.
Today I will simply say that I am ever so grateful for my eternally patient and loyal husband, who without question has stayed by my side, held my hand, listened to me cry and continues to help me ferret out an answer and end to this nightmare. I have said before that if the situation had been reversed I am not sure I could have shown the true colors he has shown.
I am thankful for my family and friends who have stuck around, trying their best to understand a disease and a situation which is almost impossible to understand.
I am grateful for the wonderful people of my church have been so kind to me, delivering meals, coming by for visits, sending cards and keeping me on their prayer list for almost two years.
I am thankful for the fellow lyme patients I have met along this journey. These are people I would otherwise never have known. They are truly some the bravest people I have had the privilege of meeting.
I am grateful that we have somehow been able to stay financially afloat these last two years without my salary. I am not sure how much longer we can hold on, but I am grateful that I have always had a warm house, comfortable bed and food in the refrigerator.
Happy Thanksgiving.
Sunday, November 22, 2009
Exercising and The Children
The experts say Lyme patients won't get better if they don't exercise. It's makes complete sense. It's essential for detoxing dead toxins out of your body and boosting the immune system.
Exercise is good for everything. I used to exercise regularly before I got sick. I've run he gamut of Aerobics classes, Step classes, Palates, Yoga, Tai Chi etc. In the years prior to diagnoses I had basically pared my exercising down to walking about 2 miles and doing some lite weight work at home. I didn't have the same stamina I used to have. Now I know why.
Exercising when you are sick can be a problem. I do the best I can and try to get out on days I don't feel as bad. It's not consistent, because the days I find myself confined to the couch, clearly the last thing I can do is exercise. Like I say, I do the best I can.
Today I felt well enough to go for a walk. My hip is still hurting but not as bad. I am not as spacey and my headache is more manageable. I slept a little better last night so I had the fuel. My husband and I went to the track at the Middle School campus nearby. I feel pretty safe there, if I stay in the center of the track lanes as it is surrounded by fields. It was a beautiful day here and I didn't want to miss out on the sunshine.
I have walked at this track on many other occasions. It's in a very rural area where many families have moved north from the boroughs of New York City or Westchester. The area is safe for raising children and the cost of housing is reasonable. The school districts although large, are for the most part pretty good.
I was at the track in the middle of the day once last spring and some of the school kids were out on the grass having gym class. They were playing soccer. It was a warm day and many of the kids were wearing shorts. They were running all over the place, diving for the soccer ball. As I drove past the soccer area, headed for the track itself, I glanced to my right and about 25 yards away I saw at least 30 deer grazing and wandering around. They were literally only yards from the kids. I remember being shocked. These innocent school children were playing in the grass where obviously these deer had walked. I remember doing some quick math in my head, guessing the percentage of kids in that group that would be bitten that day.
It's the children I feel the most sorry for. In the 2 years I have been sick, I have seen my share of sick kids at the Lyme doctors office. They are destroyed. They are pale and listless, thin and very sad. If a child is bitten when they are 5, misdiagnosed with ADHD, depression or a behavior problem for a few years, and become very low functioning, occasionally a professional along the way will think of Lyme. It's a long road back for them. They have missed tons of schoolwork to say nothing of the childhood fun and socialization they will never get back. Their lives are about coping with illness and doctor's appts. The treatment is rough and unpleasant. I've wondered how many tears have been shed, over a child not wanting to infuse their Picc Line with IV antibiotics, or take their meds because it gives them stomachaches. Their parents sit next to them in the waiting rooms, exhausted emotionally and probably financially as well.
Very often I feel that if someone of power at the CDC or NIH had a child who suffered with Chronic Lyme, the road to research and a real cure would be evenly paved and much much shorter.
*posted National Lyme Disease Risk Map - Darkest Areas Are the Most Endemic*
Saturday, November 21, 2009
Not Sleeping
It's 415AM. I can't sleep...I am in so much pain...this must be the herx from the new antibiotic protocol. My head is pounding, every muscle in my body aches, and I have this horrific pain in my hip. I'm so tired and I need to sleep. I don't usually take the meds for the pain that I was given to the doctor. Tonight I don't have a choice. I am scared wondering how long this torture is going to last. It can last 2 days to 2 weeks.
Friday, November 20, 2009
Playing Outside And Never Going On The Grass
I used to play outside all the time as a kid. I grew up in a neighborhood where I could ride my bike, play hide and seek, tag, kickball, make forts with leaves and all kinds of great fun. I always felt better playing outside with my friends, getting exercise and running around. The town I lived in is home to a college campus and the campus fields were directly across from my street. We used to go over to the fields and hide in the 3 foot tall grass, and pop out at each other. I remember summer days my mother packing a bag lunch so my friends and I could go over the fields, sit under the tree and eat. Sometimes we would see deer not far way, and we would be so careful not to disturb them. They were so gentle and beautiful. We shared the wide open spaces with bunnies, and squirrels, chipmunks and birds, and thought it was neat to be a part of their world.
Getting older, brought less time outside except to help mow the lawn and do the yard work. I enjoyed being outside even though it was more about work and less about play. Of course we went to to local parks on some hikes, took vacations at the Finger Lakes, and went on a few camping trips here and there.
When I had my children, I was so happy to revisit my fondness for the outdoors. I wanted them to enjoy the outdoors as much as I did. When they were really little, I took them outside everyday so they could play in the yard. They played all the same childhood games I used to play in our neighborhood. I would encourage them to go outside everyday after school, to get their "wiggles" out. All the kids in the neighborhood played together. It was great watching them run and play. They always had a good appetite and slept well at night. I was certain that they would grow up into wholesome grounded adults with an appreciation for the gifts of nature. The kids were involved in sports during school. Like all the other mom's, I'd sit at the fields and enjoy the fresh air and sunshine.
Since being diagnosed with Lyme and living the nightmare of a Chronic Lyme Disease patient, I no longer walk on the grass in my yard, or on any grass in any ones yard. My path to the car is either through the garage or straight out the front door and down the sidewalk to the driveway. I will go on no hikes, no camping trips, no picnics. If I go to a park, I head directly to the sidewalk, and don't let my feet slip from that concrete. I no longer do any yard work, pull weeds or trim shrubs. I will sit on my deck, with great caution, knowing how ticks like to hide in the dampness between the decking. The woods on our property are 25 feet from my back door. I watch the deer, squirrels, chipmunks, bunnies and birds from my sliding glass door, and now only view them as tick delivery vessels which aid the persistence of devastation, pain and illness.
It saddens me that it has to be this way. I miss what used to make me feel good about life. The confinement of being sick with Lyme, causes me to mourn the freedom of the outdoors. I miss the life I used to have. I had no idea how serious this disease could be. Had I known I would certainly have been more careful. How could we not have known?
Getting older, brought less time outside except to help mow the lawn and do the yard work. I enjoyed being outside even though it was more about work and less about play. Of course we went to to local parks on some hikes, took vacations at the Finger Lakes, and went on a few camping trips here and there.
When I had my children, I was so happy to revisit my fondness for the outdoors. I wanted them to enjoy the outdoors as much as I did. When they were really little, I took them outside everyday so they could play in the yard. They played all the same childhood games I used to play in our neighborhood. I would encourage them to go outside everyday after school, to get their "wiggles" out. All the kids in the neighborhood played together. It was great watching them run and play. They always had a good appetite and slept well at night. I was certain that they would grow up into wholesome grounded adults with an appreciation for the gifts of nature. The kids were involved in sports during school. Like all the other mom's, I'd sit at the fields and enjoy the fresh air and sunshine.
Since being diagnosed with Lyme and living the nightmare of a Chronic Lyme Disease patient, I no longer walk on the grass in my yard, or on any grass in any ones yard. My path to the car is either through the garage or straight out the front door and down the sidewalk to the driveway. I will go on no hikes, no camping trips, no picnics. If I go to a park, I head directly to the sidewalk, and don't let my feet slip from that concrete. I no longer do any yard work, pull weeds or trim shrubs. I will sit on my deck, with great caution, knowing how ticks like to hide in the dampness between the decking. The woods on our property are 25 feet from my back door. I watch the deer, squirrels, chipmunks, bunnies and birds from my sliding glass door, and now only view them as tick delivery vessels which aid the persistence of devastation, pain and illness.
It saddens me that it has to be this way. I miss what used to make me feel good about life. The confinement of being sick with Lyme, causes me to mourn the freedom of the outdoors. I miss the life I used to have. I had no idea how serious this disease could be. Had I known I would certainly have been more careful. How could we not have known?
Thursday, November 19, 2009
What's A Nice Girl Like You Doing In A Place Like This?
Treating Lyme Disease and Co-infections is done with rotations of antibiotics and sometimes herbal remedies. All the diseases have lifecyles, take on different forms, and are only killed off during their reproductive cycles. When the diseases are initially hit by antibiotics, they release neuro toxins into the blood stream causing the patient to "herx" (short of Herxheimer Reaction - Google it) and feel worse until the dead toxins are detoxed from the body. Factor in a 2 or 3 different diseases, ie, Lyme, Bartonella, Babesia like me; length of time the diseases have been harbored, sensitivities and changes in medications and it is understandable how long treatment can take. Also, because of the toxicity of the medications, patients can develop complications like yeast which force a break in the treatment schedule. I personally had a 5 month break in treatment which set things back for and sent me into a full on relapse.
So it sounds simple, hit the bugs with antibiotics, wait for the bugs to die, and detox the dead stuff from your body, and you are well. It does sound simple, except there are tons of other scary factors...like possible auto immune responses, previously mentioned sensitivities to medications, heavy metals, genes which prevent proper detoxing, clogged detox pathways, and alot more I knew but probably forgot.
Today I called the Drs. office to speak to the PA. My first appt with this new (my third) LLMD (Lyme Literate Medical Doctor) was November 5th. It was a four and a half hour appt. They were very thorough going over my history, drawing bloods, a physical etc. My treatment protocol included Minocin, Plaquenil, Tindamax, Zith, b12 shots, Nystatin. The first Minocin I took, gave me a major migraine, so I called and they said to hold off the Mino for a while. I have been gradually increasing the Zith and Plaquenil. I am still at only half the dosage for the Plaquenil. My sleep has become interrupted and I have had this dizzy, confused, inability to concentrate feeling. I think it's from the Plaquenil. I am willing to tough it out and stay on it, if it's just bugs dieing off, but if it's a serious side effect, I am sure they will take me off.
This is how it goes with Lyme. Trying meds, feeling their effect, and trying to stay on them. Forever wondering if taking all these meds is really doing more harm than good to your body, wondering how much longer it will take to get back to some reasonable shadow of yourself, wondering if you be able to participate in the next family holiday, wondering if you be well enough to attend your kids' future graduation, ....all the time wondering.....what's a nice girl like you doing in a place like this?
So it sounds simple, hit the bugs with antibiotics, wait for the bugs to die, and detox the dead stuff from your body, and you are well. It does sound simple, except there are tons of other scary factors...like possible auto immune responses, previously mentioned sensitivities to medications, heavy metals, genes which prevent proper detoxing, clogged detox pathways, and alot more I knew but probably forgot.
Today I called the Drs. office to speak to the PA. My first appt with this new (my third) LLMD (Lyme Literate Medical Doctor) was November 5th. It was a four and a half hour appt. They were very thorough going over my history, drawing bloods, a physical etc. My treatment protocol included Minocin, Plaquenil, Tindamax, Zith, b12 shots, Nystatin. The first Minocin I took, gave me a major migraine, so I called and they said to hold off the Mino for a while. I have been gradually increasing the Zith and Plaquenil. I am still at only half the dosage for the Plaquenil. My sleep has become interrupted and I have had this dizzy, confused, inability to concentrate feeling. I think it's from the Plaquenil. I am willing to tough it out and stay on it, if it's just bugs dieing off, but if it's a serious side effect, I am sure they will take me off.
This is how it goes with Lyme. Trying meds, feeling their effect, and trying to stay on them. Forever wondering if taking all these meds is really doing more harm than good to your body, wondering how much longer it will take to get back to some reasonable shadow of yourself, wondering if you be able to participate in the next family holiday, wondering if you be well enough to attend your kids' future graduation, ....all the time wondering.....what's a nice girl like you doing in a place like this?
Wednesday, November 18, 2009
Encountering Others
I bumped into someone in the grocery store yesterday. She had heard about my illness but wasn't sure of the particulars. These encounters are especially hard for me. Not that I mind people asking...I appreciate their concern. How do I shorten this 2 plus years into a conversation that is understandable next to the broccoli and collard greens? It was late in the day, which is generally the time I am on the couch, so I was tired, and feeling a little dizzy. I just wanted to get home.
This person continued to ask questions with deeper interest and I could see her face turning pale. I have had this reaction before. It's generally before people's eyes glaze over. It usually means one of two things. They are in shock and tuned out and planning their escape from the conversation OR they are connecting the dots in their own head, about unexplained aches and pains they or a family member has; symptoms that a doctor can't define. I could tell she wanted me to continue to talk, tell her more specifics. She was looking more and more serious and talked about how she always did her own yard work, has along history of camping and hiking. She is a nurse, so I told her about Igenex and mentioned that if she was really worried to do a blood draw and maybe it would answer some of her questions. I explained I really needed to leave, and I wasn't feeling well. I took what I had in my cart checked out and left.
I was exhausted when I got home. Not only from the busy day I had, but from the conversation. I, like all Chronic Lyme patients suspect that most people who have spent time outside, especially in endemic areas like upstate New York where I live, are harboring some kind Tick Borne Disease. The lucky ones are those whose immune systems are never challenged and it remains dormant. The unlucky ones are like me...something tips the scales, either another bite, or an illness and all hell breaks loose, my immune system couldn't hold it off any longer.
I don't know what this person will do. She may call me if she wants.....maybe not. Talking about this disease with people who are unfamiliar is a challenge. You can really look like "The Crazy Lyme Lady" if you aren't careful. The fact of the matter is that Lyme Disease is the number one Infectious Disease in the US. Everyone is at risk, unless you live in a bubble. People in rural areas are living among the ticks, and people who live in Urban areas aren't completely safe.
I am blessed that I have made some really good friends with people who are struggling with this disease. I also have a few friends who aren't sick who try to keep up, listen when I blather on and try their best to understand the treatment protocols and how they effect me. There have been some people who have lost patience with a sick friend and therefore drifted away. I guess I understand, but I suspect I will understand better, if I ever get well.
I walk the fine line of allowing the disease which has overtaken me to overtake all my encounters with people. Is it better to talk about it, or be silent? I think it depends on the person. Lyme Disease has completely changed my life, my thought patterns and feelings about people. It has caused me great introspection and rocked my beliefs. It is difficult for me not to bring this baggage to conversations, right now. Hopefully one of the benefits of getting well, means that I will no longer have to wear this disease like a badge.
This person continued to ask questions with deeper interest and I could see her face turning pale. I have had this reaction before. It's generally before people's eyes glaze over. It usually means one of two things. They are in shock and tuned out and planning their escape from the conversation OR they are connecting the dots in their own head, about unexplained aches and pains they or a family member has; symptoms that a doctor can't define. I could tell she wanted me to continue to talk, tell her more specifics. She was looking more and more serious and talked about how she always did her own yard work, has along history of camping and hiking. She is a nurse, so I told her about Igenex and mentioned that if she was really worried to do a blood draw and maybe it would answer some of her questions. I explained I really needed to leave, and I wasn't feeling well. I took what I had in my cart checked out and left.
I was exhausted when I got home. Not only from the busy day I had, but from the conversation. I, like all Chronic Lyme patients suspect that most people who have spent time outside, especially in endemic areas like upstate New York where I live, are harboring some kind Tick Borne Disease. The lucky ones are those whose immune systems are never challenged and it remains dormant. The unlucky ones are like me...something tips the scales, either another bite, or an illness and all hell breaks loose, my immune system couldn't hold it off any longer.
I don't know what this person will do. She may call me if she wants.....maybe not. Talking about this disease with people who are unfamiliar is a challenge. You can really look like "The Crazy Lyme Lady" if you aren't careful. The fact of the matter is that Lyme Disease is the number one Infectious Disease in the US. Everyone is at risk, unless you live in a bubble. People in rural areas are living among the ticks, and people who live in Urban areas aren't completely safe.
I am blessed that I have made some really good friends with people who are struggling with this disease. I also have a few friends who aren't sick who try to keep up, listen when I blather on and try their best to understand the treatment protocols and how they effect me. There have been some people who have lost patience with a sick friend and therefore drifted away. I guess I understand, but I suspect I will understand better, if I ever get well.
I walk the fine line of allowing the disease which has overtaken me to overtake all my encounters with people. Is it better to talk about it, or be silent? I think it depends on the person. Lyme Disease has completely changed my life, my thought patterns and feelings about people. It has caused me great introspection and rocked my beliefs. It is difficult for me not to bring this baggage to conversations, right now. Hopefully one of the benefits of getting well, means that I will no longer have to wear this disease like a badge.
Monday, November 16, 2009
Chronic Lyme, Amy Tan and the Holidays
In my first entry I failed to mention the difference between Lyme Disease and Chronic Lyme Disease. Strange when you live in world of illness, you become accustomed to using words and acronyms assuming they are familiar to everyone.
Chronic Lyme Disease refers to people who still have symptoms despite treatment. In my case, I have Chronic Lyme Disease. I have been in treatment, on and off antibiotics for 2 years, and still have remaining symptoms. When off of antibiotics I get sicker. I also have two co infections of Lyme Disease; Bartonellla and Babsiea...two Tick Born Diseases (TBD's) which piggyback along the the Lyme infection to make treatment even more difficult and the symptoms even more confusing to weed out. All of these diseases I have had for quite a long time.
Chronic Lyme Disease is not recognized by the mainstream medical community, nor by the bulk of health insurance companies. There is little research and almost no funding. Patients and their families are forced into "experimental treatment", while watching their bank accounts dwindle. They start to choose between paying bills and paying for Lyme Doctor visits. We are the orphans of medical care in the United States. We have to navigate on our own, and hope for the best.
I was reading Amy Tans' website yesterday. She is the author of books such as "The Joy Luck Club", and a fellow Chronic Lyme Patient. She has suffered as much as all Lyme Patients. You can read her story here: http://www.amytan.net/ under the Section "SLyme Disease." I found it frightening that she is building a house for the future which is wheelchair accessible. It really bothered me that she is famous, has more money than most of us and can to pay for any kind of treatment. She is planning her future, and quite blatantly accepts it may be one with a wheelchair. Another nail in coffin. This disease is devastating. It has huge consequences. It scares me.
The holidays are fast approaching. When I started seeing TV commercials the day after Halloween, advertising specials for Christmas, I felt a shift in my soul. This will be my third Thanksgiving and Christmas sick. It means that I have felt like I have the flu, dealt with nerve and excruciating migraine pain, insomnia, and body aches (to name a few) for over 700 days. 700 days is a long time, for me anyway. The holidays represent a time of family and joy, sharing and visiting. I feel like I have nothing to share and nothing to be joyous about. I am worn out. I don't want gifts and I don't want to give gifts. It sounds selfish, I know. But my spirit is broken by this disease. Some days I don't know how I will make it through to dinner. Looking ahead at the hubbub of the holidays completely overwhelms me. I am looking forward to seeing my daughter and son, coming home from school. I look forward to their energy in the house, but I am saddened that my role as their mother has taken on the hue of a chronically ill person. It's not fair to any of us.
Lyme Disease, with all it's deception and trickery is not the slightest bit fair.
Chronic Lyme Disease refers to people who still have symptoms despite treatment. In my case, I have Chronic Lyme Disease. I have been in treatment, on and off antibiotics for 2 years, and still have remaining symptoms. When off of antibiotics I get sicker. I also have two co infections of Lyme Disease; Bartonellla and Babsiea...two Tick Born Diseases (TBD's) which piggyback along the the Lyme infection to make treatment even more difficult and the symptoms even more confusing to weed out. All of these diseases I have had for quite a long time.
Chronic Lyme Disease is not recognized by the mainstream medical community, nor by the bulk of health insurance companies. There is little research and almost no funding. Patients and their families are forced into "experimental treatment", while watching their bank accounts dwindle. They start to choose between paying bills and paying for Lyme Doctor visits. We are the orphans of medical care in the United States. We have to navigate on our own, and hope for the best.
I was reading Amy Tans' website yesterday. She is the author of books such as "The Joy Luck Club", and a fellow Chronic Lyme Patient. She has suffered as much as all Lyme Patients. You can read her story here: http://www.amytan.net/ under the Section "SLyme Disease." I found it frightening that she is building a house for the future which is wheelchair accessible. It really bothered me that she is famous, has more money than most of us and can to pay for any kind of treatment. She is planning her future, and quite blatantly accepts it may be one with a wheelchair. Another nail in coffin. This disease is devastating. It has huge consequences. It scares me.
The holidays are fast approaching. When I started seeing TV commercials the day after Halloween, advertising specials for Christmas, I felt a shift in my soul. This will be my third Thanksgiving and Christmas sick. It means that I have felt like I have the flu, dealt with nerve and excruciating migraine pain, insomnia, and body aches (to name a few) for over 700 days. 700 days is a long time, for me anyway. The holidays represent a time of family and joy, sharing and visiting. I feel like I have nothing to share and nothing to be joyous about. I am worn out. I don't want gifts and I don't want to give gifts. It sounds selfish, I know. But my spirit is broken by this disease. Some days I don't know how I will make it through to dinner. Looking ahead at the hubbub of the holidays completely overwhelms me. I am looking forward to seeing my daughter and son, coming home from school. I look forward to their energy in the house, but I am saddened that my role as their mother has taken on the hue of a chronically ill person. It's not fair to any of us.
Lyme Disease, with all it's deception and trickery is not the slightest bit fair.
Sunday, November 15, 2009
My First Entry
I opened a blog account with blogspot a few months ago, and never made any entries. I'm not really sure why, but I suppose like every other thought process with this disease, I felt that blogging when you have Lyme means you are really sick.
I am really sick. I gave a brief overview of the beginnings of this nightmare under my title. Had they allowed me more than 500 characters I would have written more.
My Lyme diagnosis came in September 2007, 2 weeks before Claude (husband) and I were to leave for our 25th anniversary trip to Europe. I was really ill with a flu like bug, with all kinds of other symptoms. I had tests along with a trip to the ER and finally had a diagnosis of Lyme Disease. Our trip was postponed.
Treatment began, starting with 200 mg of Doxycycline. I got a little better but after 2 months, still had many remaining symptoms. Malaise, bodyaches, headaches, insomnia, confusion, to name the short list. After doing some online research the pieces of the puzzle started to come together. Years before my diagnosis, I had lot of strange things going on. Nothing that pointed to anything specifically. I knew I was doing less and less, napping in the afternoon, having trouble concentrating. I had an event where after a root canal, I had horrific nerve pain in my left jaw, along with a stiff neck and headache. I was told I had Trigeminal Neuralgia and given meds for that. I just didn't feel well most of the time. I had 4 Western Blot Lyme Tests in the years after the root cancel episode to September 2007. All Lyme test results were negative.
...but I had a family. My kids were college and high school age. I worked at the photography business. I pushed past things. I told myself, everyone has little aches and pains. We are all getting older. Maybe I am just hypersensitive. None of the doctors I saw thought there was anything wrong.
Within those years, assuming I was first bitten in 2004, Lyme spirochetes were burrowing deeper and deeper into every muscle and nerve ending in my body just waiting for a time to take over and change my life forever. And so they have, and I have decided that this story deserves to be noted. Please forgive me if my grammar isn't as accurate as it could be, a typo appears here and there, or if my entries aren't consistent. This disease changes from day to day, and offers no reliability to my energy level or ability to think clearly. Please be patient. Lyme is not a disease for the impatient.......so I have learned.
I am really sick. I gave a brief overview of the beginnings of this nightmare under my title. Had they allowed me more than 500 characters I would have written more.
My Lyme diagnosis came in September 2007, 2 weeks before Claude (husband) and I were to leave for our 25th anniversary trip to Europe. I was really ill with a flu like bug, with all kinds of other symptoms. I had tests along with a trip to the ER and finally had a diagnosis of Lyme Disease. Our trip was postponed.
Treatment began, starting with 200 mg of Doxycycline. I got a little better but after 2 months, still had many remaining symptoms. Malaise, bodyaches, headaches, insomnia, confusion, to name the short list. After doing some online research the pieces of the puzzle started to come together. Years before my diagnosis, I had lot of strange things going on. Nothing that pointed to anything specifically. I knew I was doing less and less, napping in the afternoon, having trouble concentrating. I had an event where after a root canal, I had horrific nerve pain in my left jaw, along with a stiff neck and headache. I was told I had Trigeminal Neuralgia and given meds for that. I just didn't feel well most of the time. I had 4 Western Blot Lyme Tests in the years after the root cancel episode to September 2007. All Lyme test results were negative.
...but I had a family. My kids were college and high school age. I worked at the photography business. I pushed past things. I told myself, everyone has little aches and pains. We are all getting older. Maybe I am just hypersensitive. None of the doctors I saw thought there was anything wrong.
Within those years, assuming I was first bitten in 2004, Lyme spirochetes were burrowing deeper and deeper into every muscle and nerve ending in my body just waiting for a time to take over and change my life forever. And so they have, and I have decided that this story deserves to be noted. Please forgive me if my grammar isn't as accurate as it could be, a typo appears here and there, or if my entries aren't consistent. This disease changes from day to day, and offers no reliability to my energy level or ability to think clearly. Please be patient. Lyme is not a disease for the impatient.......so I have learned.
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