I rarely speak out on Lyme Disease. Maybe because Lyme Disease is so personal to me and has affected so much of my life or maybe because as soon as you broach the subject you open up yourself for severe criticism from a host of sources. Who knows? It is just hard to do, especially when you live with it on a daily basis.
Lyme has changed everything I knew about the way I lived, how I moved and how my body functioned. Talking about it brings up emotions I would generally prefer stayed locked away but after reading the recent article listed below, I felt compelled to put it on my blog. The affects of Lyme is well stated in this article and that is a difficult thing to do, something I have trouble accomplishing myself, even to my family who sees the affects themselves on a daily basis. Come the later part of September 2013, I will have fought this disease for six years now. I have been unable to walk from it for five years.
For anyone who has lived the horror of Chronic Disseminated Neurological Lyme Disease, with a dash of cancer on the side, they know there is no such thing of a 'Little Lyme Flare'. You have to have lived through this disease to understand what 'I drew-up all night' means, or 'my muscles just won't relax'. For most people, they think of cramps, it is all they can think of, they have nothing to compare this kind of pain to in their own lives. I know before I began to walk this path, that is what I thought, but that is not what is happening to the suffers of this disease. Labor pains become wishful thinking on bad nights. The pain involved in flaring from Lyme is so severe that even morphine in high doses cannot touch the levels of nerve pain involved. In fact, nothing really can, after all, it is nerve pain. Well, there is something that could but that is a topic for another article and again, a controversial subject. Because this disease is still considered almost taboo in conventional circles, it is hard to even find doctors who will work with you. Doctors with any knowledge of this elusive disease that likes to mimic other diseases and affects each and every person so differently are hard to come by and are treated like criminals in the conventional medical establishment.
I was surprised to have read an article sent to me by my husband last week that actually talked about Lyme Disease in a real and honest way, albeit, a bit optimist in my opinion. One has to wonder why there is such a fight in treating a disease that is affecting more people than anyone wants to admit. Why is this suffering being allowed? Why are we putting the victims on trial, if you will, for having the misfortune of contracting the disease? There isn't one of us that hasn't been told it was all in head despite being curled-up in a ball from the pain of our muscles all drawing up at one time in painful spasticity. If you have ever read "Lab 257" or "The Poison Plum," you seriously begin to question the true origins of the new strains of this age old disease. I am a self acknowledged Conspiracy Theorist so I have no problem looking for the dark shadow behind this whole epidemic so having lived through a disease where you have to fight for treatment, and even diagnosis, it seems to be the only reasonable explanation for what is happening.
On this date, I am still recovering from a severe Lyme Flare after having oral surgery which exposed a deep infection in my jaw. What does that mean??? It means, if I am good, stay on my regiment and be very careful with what I eat, what I touch, what I take and what I do, I can keep the Lyme 'manageable.' If anything changes...I accidentally eat the wrong thing or touch a cleaning fluid that reacts badly to my body...I go into a flare...or, I have a medical procedure that compromises my immunity or the status-quo, or simply get the flu, then it happens, my body can no longer keep the ever weakening gates closed and in turn the gates of hell are opened. I find myself rolling in bed in pain for days, sometimes weeks, trying to recover from a simple mistake or just the unfortunately circumstance of getting sick. It takes weeks to recover and allow my body to crawl its way to back to 'manageable.' That is the place every Chronic Lyme patient hopes to obtain on a daily basis, 'manageable'.
For a long time, I did nothing but stay at home. Now, after having survived a Cancer that every doctor we saw told us would take my life, all the while fighting Lyme in tandem, and being too close to loosing my family forever, I have chosen to live my life through this pain, whatever it takes. What is disappointing is our medical system does not seem to care enough to put real effort into research for a disease that is affecting far more people than they can number. A disease that is not just causing a few a little joint pains but is causing paralysis, stealing peoples lives and peace of mind. A disease that can take a healthy 38 year old woman who was walking 2 miles a day when she was bit by a tiny tick and put her in wheelchair within a matter of months. A disease that put at least 5 people, to my knowledge, in wheelchairs within blocks of the house where I contracted the disease.
I sit in a wheelchair today because of the severe nerve damage to my legs. The debate goes on as to whether it is reversible or not. I have a leg that is pulled so tightly from the never-ending spasms over the years that my foot will not longer go into a neutral position so it can fit into a shoe properly and it will take an operation to try to lower the foot so I can at least sit comfortably again. Of course, with the rounds of antibiotics that will accompany this surgery, I know, it will throw me into a Herx that will make recovery difficult, at best. So, what do I do? These are decisions every person with Chronic Lyme, 'the-disease-that-isn't', must make each and every day. For those of us with chronic Lyme, we live between ' a rock and hard place'. We are the proverbial boy with our finger in the dam.
Despite the difficulty, daily treatments, the vast amount of paraphernalia that accompanies fighting not one but two diseases in my case, I have taken to the road with my family. We are Road Warriors, we always have been. It is what my husband does for his job and what our children have grown up around. They have been traveling with us since they were nursing babies and they love it! Because of me, we had to stop for a long while because I could not move. We have fought the Lyme down, after 6 long years, to that place we all hope to obtain...'manageable'. So, we are on the road once again and I am living my life, with my family, together, like we always have, pretending all this is normal.
I was asked once which was harder to fight, the Lyme or the Cancer....that is easy to answer, the cancer, any day. Almost four years of clean cancer numbers after the removal of a 3 1/2 pound, triple-negative tumor that took my left breast with it in a simple Mastectomy...we are winning that fight. The Lyme isn't as easy. After failed attempt, after failed attempt of fighting the Lyme with conventional medication, I have chosen to fight both diseases with the Gerson Therapy and I am doing far better than most people in my position.
But, again, where is the research? Why aren't the deer affected by Lyme despite being the host that carries those little ticks everywhere? Why is so little being done while so many are suffering and even dying? Remember, the heart is a muscle too and can be affected by Lyme like any other muscle in the body. Again, something no one wants to mention, or think is possible. Why isn't more being done to research a disease which doesn't even have a reliable test and which sports more mis-information than I have ever seen on a single disease? Questions that have been asked over and over by so many suffers and still have no good answers.
For me, I choose to live, to go on and to be as normal as possible while in the shadows, not just me, but my entire family is fighting the affects of Lyme. I will survive this. I know I will, I have Faith, I know God will see me through to the end. It is just very sad that so little is being done to help the countless suffers on the medical front. For that, we need revolution, we need someone to take ownership, we need someone to be honest about the origins of this disease and someone to find the answers we all need...
Be Calm and Don't Blink...
Lynne
CNN Article on Lyme Disease
Lyme has changed everything I knew about the way I lived, how I moved and how my body functioned. Talking about it brings up emotions I would generally prefer stayed locked away but after reading the recent article listed below, I felt compelled to put it on my blog. The affects of Lyme is well stated in this article and that is a difficult thing to do, something I have trouble accomplishing myself, even to my family who sees the affects themselves on a daily basis. Come the later part of September 2013, I will have fought this disease for six years now. I have been unable to walk from it for five years.
For anyone who has lived the horror of Chronic Disseminated Neurological Lyme Disease, with a dash of cancer on the side, they know there is no such thing of a 'Little Lyme Flare'. You have to have lived through this disease to understand what 'I drew-up all night' means, or 'my muscles just won't relax'. For most people, they think of cramps, it is all they can think of, they have nothing to compare this kind of pain to in their own lives. I know before I began to walk this path, that is what I thought, but that is not what is happening to the suffers of this disease. Labor pains become wishful thinking on bad nights. The pain involved in flaring from Lyme is so severe that even morphine in high doses cannot touch the levels of nerve pain involved. In fact, nothing really can, after all, it is nerve pain. Well, there is something that could but that is a topic for another article and again, a controversial subject. Because this disease is still considered almost taboo in conventional circles, it is hard to even find doctors who will work with you. Doctors with any knowledge of this elusive disease that likes to mimic other diseases and affects each and every person so differently are hard to come by and are treated like criminals in the conventional medical establishment.
I was surprised to have read an article sent to me by my husband last week that actually talked about Lyme Disease in a real and honest way, albeit, a bit optimist in my opinion. One has to wonder why there is such a fight in treating a disease that is affecting more people than anyone wants to admit. Why is this suffering being allowed? Why are we putting the victims on trial, if you will, for having the misfortune of contracting the disease? There isn't one of us that hasn't been told it was all in head despite being curled-up in a ball from the pain of our muscles all drawing up at one time in painful spasticity. If you have ever read "Lab 257" or "The Poison Plum," you seriously begin to question the true origins of the new strains of this age old disease. I am a self acknowledged Conspiracy Theorist so I have no problem looking for the dark shadow behind this whole epidemic so having lived through a disease where you have to fight for treatment, and even diagnosis, it seems to be the only reasonable explanation for what is happening.
On this date, I am still recovering from a severe Lyme Flare after having oral surgery which exposed a deep infection in my jaw. What does that mean??? It means, if I am good, stay on my regiment and be very careful with what I eat, what I touch, what I take and what I do, I can keep the Lyme 'manageable.' If anything changes...I accidentally eat the wrong thing or touch a cleaning fluid that reacts badly to my body...I go into a flare...or, I have a medical procedure that compromises my immunity or the status-quo, or simply get the flu, then it happens, my body can no longer keep the ever weakening gates closed and in turn the gates of hell are opened. I find myself rolling in bed in pain for days, sometimes weeks, trying to recover from a simple mistake or just the unfortunately circumstance of getting sick. It takes weeks to recover and allow my body to crawl its way to back to 'manageable.' That is the place every Chronic Lyme patient hopes to obtain on a daily basis, 'manageable'.
For a long time, I did nothing but stay at home. Now, after having survived a Cancer that every doctor we saw told us would take my life, all the while fighting Lyme in tandem, and being too close to loosing my family forever, I have chosen to live my life through this pain, whatever it takes. What is disappointing is our medical system does not seem to care enough to put real effort into research for a disease that is affecting far more people than they can number. A disease that is not just causing a few a little joint pains but is causing paralysis, stealing peoples lives and peace of mind. A disease that can take a healthy 38 year old woman who was walking 2 miles a day when she was bit by a tiny tick and put her in wheelchair within a matter of months. A disease that put at least 5 people, to my knowledge, in wheelchairs within blocks of the house where I contracted the disease.
I sit in a wheelchair today because of the severe nerve damage to my legs. The debate goes on as to whether it is reversible or not. I have a leg that is pulled so tightly from the never-ending spasms over the years that my foot will not longer go into a neutral position so it can fit into a shoe properly and it will take an operation to try to lower the foot so I can at least sit comfortably again. Of course, with the rounds of antibiotics that will accompany this surgery, I know, it will throw me into a Herx that will make recovery difficult, at best. So, what do I do? These are decisions every person with Chronic Lyme, 'the-disease-that-isn't', must make each and every day. For those of us with chronic Lyme, we live between ' a rock and hard place'. We are the proverbial boy with our finger in the dam.
Despite the difficulty, daily treatments, the vast amount of paraphernalia that accompanies fighting not one but two diseases in my case, I have taken to the road with my family. We are Road Warriors, we always have been. It is what my husband does for his job and what our children have grown up around. They have been traveling with us since they were nursing babies and they love it! Because of me, we had to stop for a long while because I could not move. We have fought the Lyme down, after 6 long years, to that place we all hope to obtain...'manageable'. So, we are on the road once again and I am living my life, with my family, together, like we always have, pretending all this is normal.
I was asked once which was harder to fight, the Lyme or the Cancer....that is easy to answer, the cancer, any day. Almost four years of clean cancer numbers after the removal of a 3 1/2 pound, triple-negative tumor that took my left breast with it in a simple Mastectomy...we are winning that fight. The Lyme isn't as easy. After failed attempt, after failed attempt of fighting the Lyme with conventional medication, I have chosen to fight both diseases with the Gerson Therapy and I am doing far better than most people in my position.
But, again, where is the research? Why aren't the deer affected by Lyme despite being the host that carries those little ticks everywhere? Why is so little being done while so many are suffering and even dying? Remember, the heart is a muscle too and can be affected by Lyme like any other muscle in the body. Again, something no one wants to mention, or think is possible. Why isn't more being done to research a disease which doesn't even have a reliable test and which sports more mis-information than I have ever seen on a single disease? Questions that have been asked over and over by so many suffers and still have no good answers.
For me, I choose to live, to go on and to be as normal as possible while in the shadows, not just me, but my entire family is fighting the affects of Lyme. I will survive this. I know I will, I have Faith, I know God will see me through to the end. It is just very sad that so little is being done to help the countless suffers on the medical front. For that, we need revolution, we need someone to take ownership, we need someone to be honest about the origins of this disease and someone to find the answers we all need...
Be Calm and Don't Blink...
Lynne
CNN Article on Lyme Disease
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