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".
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