Isolated by Lyme Disease

Isolated by Lyme Disease





As we all know, things do not always go as planned in our lives. Some say life is a journey, others call it a mystery. Whatever term we want to use, we are never prepared for what lies ahead. I know, I sure wasn't.



Life is intended to be lived one day at a time. I can understand why that is, because for many of us, if we knew what lurked behind each corner, many of us would live our lives hidden away from anything that could harm or hurt us. For example, never having to feel the emotional and physical trauma of suffering or losing a loved one. If we could only find a way to hide from the unexpected so it is unable to find us. But, we are programmed to function in this world, regardless of what awaits us. For me? It is facing the unexpected alone. Sure, we can have friends or family to support us, but if tragedy strikes you or I, we are alone. No one else can take the hurt, loss, suffering away. We are forced to pioneer through it. Who knows, maybe some of us are trail blazers for those who will follow in our unlucky footsteps.



One of my lurkers was a debilitating disease called Chronic Neurological Lyme disease. I was struck with this disease in my early thirties. Lyme is know as the “Great Imitator”, so it makes it nearly impossible to receive an early diagnosis. By the time they figure out what you have, it has no cure. Its goal is to destroy the mind and the body. Little by little, accompanied with relentless pain and many other frightening symptoms you learn very quickly what “SUFFERING” means. Its mission? To divide and conquer you from within while it attacks every organ in your body. You lose every sense of self and any bit of enjoyment you once knew, is no more.



Lyme Disease plays no favorites. It does not care who you are or what you are. It only wants to put you out of commission and leave you with no hope for recovery. It is a daily torment. For me, it caused me to lay in a sick bed for 18 years of my life. Wow, almost two decades of pure hell. I had to undergo every test known to the medical field. Many of which we agonizing. Let's face it. Doctors may think they are God, but they are not. And when they are confronted with the unknown and they have exhausted every effort to try and make you well, they are left with the only diagnosis that gets them off the hook, “It must be in your head.”. So, you are left to yourself with them treating only the symptoms and never coming to the knowledge of what is truly the underlying cause. So, you pray and pray hard for a miracle.



After four and a half years of suffering, I was fortunate enough to receive a call from a woman I had never met.. This person worked with my son and had listened to his heartbreak and worries about his mom's unknown illness. So, one day, right after receiving a from call from my insurance company telling me they were going to stop paying for my care, I received another call. One of the most important calls of my life. She explained that she knew someone in PA that had the same symptoms as I was suffering from and she would like to give me his number. This man had been diagnosed with Lyme disease and was receiving treatment from a LLMD. That would be a Lyme Literate Medical Doctor. These LLMD's are few and far between. The horrors of what these doctors go through to treat this illness should it become chronic is frightening, to say the least. It is my hope to bring awareness and education to the public one day. Maybe, even through writing a book. That is, if I can muster up the courage!



After speaking with the gentleman who was suffering with Lyme Disease, I have to admit, I was terrified, but relieved. His journey for a diagnosis that was destroying his life mirrored mine. I wasn't crazy after all. Maybe, I was going to finally know what had brought my life to a complete stop. Finally, I may get answer as to why I was feeling like a tortured zombie. Why I was trapped inside of a body that felt like a tomb with no way out. Why I went from a vibrant woman who had many desires and goals in this life to just breathing. Not functioning at all. Having energy level so low, that I had to take breaks in between blow drying my own hair. Which, by the way, should had not taken long, because Lyme Disease had caused my hair to fall out. Maybe, now, I would have an answer as to why I went from running and walking to using a cane, falling down, and eventually having to use a wheelchair. All in my head, right?



I traveled to PA to meet with this Lyme Specialist. Being so ill and only able to travel 3 hours at a time, my husband made me a bed in the back of our Jeep Cherokee . After arriving and meeting with the doctor, he assured me that I had Chronic Neurological Lyme Disease. However, he began running all of the necessary test to confirm his diagnosis. I recall his panic when he tried to draw my first tube of blood. My blood had thickened like ketchup and instantly metastasized in the tube, He immediately did an EKG and informed me, that he will never know why I had not already had a stroke or a heart attack.



Leaving his office that day, I can not say that I was happy to hear of the diagnosis, but maybe, finally, I would know what destroying my life and will to live. I will never forget the last words he spoke to me as I exited his office. “Linda? I am not going to lie to you. You have a very long road ahead of you. This is a political disease and we will have to fight for treatment. This is not a disease for wimps.”.

Nothing truer could have been spoken.



I had lived in Upstate NY all of my life. The winters are long and brutal.. Spring is cold and wet, Summers are short and Fall is cool and short lived. Several doctors had told me, if I would leave the north and go South, I could have a better quality of life. So, for the next 14 years of numerous pic lines, ports in my chest to administer antibiotics, narcotics for severe pain and living between labs and the Doctors offices, I constantly pleaded with my husband to move me to a warmer climate. I knew, it would not be an easy transition, but I wanted freedom from the relentless pain. If there were any chance for me to have some life left, I wanted it. I didn't want to suffer anymore. Not only that, other complications had arose from the disease causing me a surgery that left me having to under go 159 cauterizations at 2400 degrees, wide awake. I knew nothing but pain and agony. I wanted to live, but not like that anymore. So, I had begun to ask God to please just let me die.



I decided to make a trip to Florida just to see if the doctors opinion of getting me out of the north would really make a difference. So, my sister accompanied me for a three week test run. I arrived in a wheelchair and we settled in to the vacation home we had rented. Three days later, I was out of bed, walking, did a little shopping and had my first meal in a restaurant in 18 years. I was tired, but elated. Why was I able to make such a rapid change? I am not sure. I am told by the doctor that it is because of the change in the barometric pressure. All I know, I was beginning to feel life being renewed in my body and mind.



As I began to gain back some independence, it was then that the harsh reality of the time lost began to set it in. Let's face it. Time waits for no one. Eighteen years is a long time and everything had changed. It may sound funny, but one of the first things I asked, was “What happened to all of the pay phones?” I had to learn to pump my own gas, use an ATM machine and many other simple tasks. I remember how embarrassed I felt when I needed assistance to use my debit card in a clothing store. I had not grocery shopped or cooked in years. Also, one of the things that Lyme stole from me was my short term memory. I recall having to go into a bank and make a deposit. When I got to the window, I could not remember how to fill out a deposit slip. The look on the tellers face was something that should have been captured on film. If it had, I am sure it would have gone viral on a You Tube video. My face flushed, anxiety kicked in and I felt totally dumb. Finally, I looked at her and said, “I have Lyme Disease and I have lost my short term memory. Could you please help me with this?” I am sure she did not have a clue what Lyme Disease was as there are many who do not, but she was very kind and helped me make the transaction. I recall an older gentleman standing in the line at the widow beside me. He glanced over and smiled, overhearing my conversation with the teller and said, “Well, I don't have Lyme disease, but I don't have any memory either.”. I must say, that man made me feel a little better. At least, I was no longer hoping the floor would open and swallow me up from feeling humiliated.



Time went on and I wanted my husband to be with me living full time. Not traveling back and forth when it was convenient for him. After all, we had lost 18 years and now that we could have some kind of life, I wanted him with me. We are 1600 miles apart and it gets very hard sometimes being alone. Sure, I have met people, but I was married and I wanted my husband to be sharing our lives together. In all fairness, I will say, I had a tremendous amount of anger towards him. I had begged him for a very long time to get me to a warmer climate. If there was even a single chance that we could have some life back, I was willing to do whatever I had to. When I realized that I could live again and he still refused to relocate, I became angry. Was not laying in a bed and suffering for all those years enough? Had he let me go through unnecessary suffering because of his fears of starting over somewhere else? I understand that he did not want to leave his family and work. I did not want to leave everyone I knew and loved behind either, but it was a health decision. I had no choice..



I am not sure why I am writing any of this down. I guess, I am just trying to figure our where my life is going to go from here. Being alone is difficult, I have made some bad decisions since my arrival here. It was like letting a bird out of a cage. A bird with a broken wing. Learning to fly alone and not doing a very good job of it. However, I have learned, I am strong. Maybe, putting some of this on paper will help me to figure out what steps to take next. Being out of the loop for so long and then suddenly being tossed back in, is like culture shock. I missed out on many events because of being to ill to attend. Family and friends aged. I think, their gray hair startled me the most. Their children, that I last seen as babies, were now graduating from high school. Who were these people? Where did my life disappear to? The only thing I am sure of? I can not get any of it back. It is gone. Wiped out like a mangled up battlefield.



What I do know is, Chronic Neurological Lyme Disease is real. It “isolates” you from everyone and everything. It is the fastest growing infectious disease in the country, surpassing AIDS. It is a political disease and thousands of people are suffering while being denied treatment for a disease that “Does Not Exist”. They feel hopeless and are forced to lay in a sick bed with no hope for a cure. Until our government “admits” the reason behind this disease and how it all began, the struggle for recognition and treatment continues. My long road continues.





*If anyone has taken the time to read this, thank you. I had to start somewhere. There is so much to be written and revealed about this disease. Maybe, this is a beginning for me. It is all so overwhelming. Any input on how to start would be appreciated!