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Then the hurricane hit

Well it's been a few weeks till I could get back here. Got hit by the hurricane and lost electric for a couple weeks again. All is well as far as that goes now but I have had a bit of a set back where the lyme is concerned. Got a call from my dentist that I was due for a teeth cleaning. For any of you that deal with lyme, you most likely know what this means. Lyme loves to live in the moist warmth of the mouth and any time the mouth is messed with it brings out the lyme in full force. It is usually recommended that you begin a course of antibiotics before a teeth cleaning. Unfortunately, when your in remission this leads to other complications, for instance, once you begin antibiotics the lyme comes out, the war begins, remission is over. I contacted my herbalist and got on the herbal antibiotics, will take them throughout the next 2 weeks, my cleaning is scheduled for Tuesday. Been feeling pretty lousy since I began the herbals, but nothing I haven't dealt with before. It's a roller coaster ride and not a fun one. I am hoping to fly through this latest setback and get back to remission as soon as possible. In the meantime I would like to mention something that has come up recently. The other day on a facebook post I used the word Lymie, got a message from someone also with lyme telling me she finds the word "lymie" offensive. I really don't know why but as I told her, it is what I feel I am and I will continue to use it. She doesn't have to read my posts if they offend her. I was kind of puzzled by her reaction as I have never had anyone confront me about it before. I wonder if the word offends anyone else. Anyone???? So things are getting back to normal since the hurricane. We have electric and heat and the stove to cook on so all is good. I would however like to extend my good wishes and hope for a better tomorrow to my friends in NJ. I hope your lives get back to normal soon. Now I just need to get through the dratted winter. I hate the cold, increases my pain level tenfold, especially now with the neuropathy added on to it. But, as with everything else I deal with, this to shall pass. Or at the least, I will learn to live with it.

Neuropathy

A few weeks ago I began getting these spots of burning on my body. Almost like someone was holding a lit cigarette on my skin. I called my herbalist and got an appointment. A few days later I decided to also make an appointment with my doctor. The appointment with my Dr was first, I explained what I was feeling and he automatically said, "neuropathy." The last thing I expected to hear. I don't know why, I know its common with lyme, just didn't expect it for some reason. I have watched my mom suffer with neuropathy for several years now and for some reason just didn't link my symptoms with hers. The pain has been awful but I have done some research and it seems it can be alleviated somewhat with B vitamins. Neuropathy is typically caused by nerve damage due to infections, traumatic injuries, exposure to toxins and metabolic problems, also disease such as Lyme Disease. In my case I have had the traumatic injury (stroke) and Lyme Disease. After my doctors visit, I called my herbalist and told him, he is not sure if there is anything herbally for neuropathy but is going to look into it. Meanwhile I am on Metanx, which is mostly comprised of B vitamins. I was at first angry that I had to deal with yet another symptom of this disease. But I don't stay angry for long, takes to much energy to dwell on what you cannot change or control. Instead, I did what I have done since I found out I had lyme disease, I researched and applied the most natural remedies that I could find. I talked to others that have the same affliction to see what natural remedies thay had found. Unfortunately, most turn to prescription pain meds which I just won't take. Perhaps, someday, if the pain gets unbearable, I may turn to that, but I highly doubt it.

Those were the days

I went to my 35th class reunion on Saturday 10/6/2012. I have to say, I was pleasantly surprised at how many of my former classmates have been following my life. I really expected to have to repeat a million times, what had happened to me over the past 35 years. Why I walk with a cane. blah blah blah Instead I was greeted with many warm hugs and words of endearment and encouragement. My high school years were fun and carefree. My first job, at the age of 14 was at the movie theater, I worked there for almost 2 years before I got a job a bit closer to home at Tastee Freeze. I would go to school, then to work until about 11:30, drive home, go to bed and the next day do it all over again. During my highschool years, I was known as a "Tech-er" this means I attended high school for half a day and vocational technical school for the other half. I was a cosmetology student. Because of the number of students wanting this option back then, they increased the hours and classes at vo-tech to 3 a day. During my Sophomore year I went to vo-tech from 3pm till 6pm. This meant that I didn't have to get up for school until 9am. We had to be there by 10. So a typical day for me would be to get up at 9, school from 10 till 2 (they picked us up with the "short bus", tech from 3 to 6 then work from 7 til midnight. Before I turned 16 and got my license my then boyfriend who later became my first husband would take me to work. When I turned 16 and got my license my first car was an old rambler, I had that about a year before I "upgraded" to a Ford Fairlane. Don't remember the years but OLD. I am the oldest of 5, I have 3 brothers and the youngest is a sister. Both of my parents worked so at the age of 11 I was pretty much responsible for my siblings until my mom got home from work. I had an old Honda 90 motorcycle back then and when we would get home from school we would spend the hour of parental freedom riding the bike up through the slate quarries. The bike had a luggage rack on the back so I would put my sister in front of me on the gas tank, a brother behind me, and the other 2 on the luggage rack.

It looked something like this except the gas tank was in front of me like a traditional motorcycle. Oh the hours of enjoyment we had on that thing. When I look back on it now I realize the dangers of riding a motorcycle on broken slate but back then it was just fun times. Later in high school, as a senior I moved out of my parents home and into an apartment with my then future husband I remember going to the school office and telling them that I no longer lived at home and wanted to know what I should do about an excuse if I was sick. I was told that since I was always a good student I should just write my own excuses. There were no questions asked. I'm pretty sure that wouldn't happen today. I graduated in 1977 and got married in October of that year. The marriage was short lived however, as I was simply trying to remove myself from a sexually abusive father. He was my escape and I am truly sorry I did that to him. My current husband and I met in 1979 and by November of 1980 we had our first daughter, Brooke. We later married in March of 83 and had our youngest daughter the following February 1st. We raised our daughters in the same home in Bangor, PA throughout their school years. It was in the garden of this residence where I was bit by the obnoxious tick that gave me Lyme Disease. That was in 2005. Also the year we moved to our current home. I went on IV for the Lyme in 2006, it was just about 6 weeks after that I suffered the brain aneurism followed by complete brain stroke. I spent just a little over a month in the hospital, most of the in intensive care. From what I understand (I don't remember a day there) I had to be taught how to do all of the things that I used to do daily. Cook, clean, etc. The only thing I apparently did remember was how to work a computer. Weird huh? Seems a nurse sat me at a computer and asked what I wanted to do, I (apparently again) told her I wanted to chat with my brother in AZ on yahoo chat, before she figured out how to download it, I had it already downloaded and was chatting with him. About 6 months later, I was tired of sharing a computer with my husband and had him bring up the 3 old ones that were down in the storage room and within a couple hours had built him one. I went back to work shortly after and because of a faithful staff held on to my position until 2008 when my assistant had to be hospitalized, it quickly became apparent to my supervisors that she had been pretty much running the show and I was left go. I had been there for 20 years. I went on unemployment and applied for SSD, lucky for me the government took a dive and I was able to sign up right up until the day my SSD was approved.

So here I am, in bed with another re-infection. Just began my herbal treatment this morning, it will take about 5 days before the herx hell begins. I don't even remember how many re-infections I had this year. 4? 5? It's happened so many times this year, I lost count. I'm quite sure this time it was due to my husband not showering after hunting. He took his hunting clothes off outdoors but he did not shower immediately when he came in. Chose to lay down on the couch and fall asleep instead. I pleaded, I begged and I bitched and all he had to say was, "ya know, it doesn't always have to be because of me." Well yea, it will be until he does what he is supposed to do, then I either get reinfected and blame something else or I don't get reinfected. Please hubby, prove me wrong...... Well he just walked in, plopped on the sofa, all hunting clothes still on, his reasoning, "I'm going back out later" Well stay the hell away from me then. I'm beginning to get that tired feeling that so many of us lymies know. Like I haven't slept for days. Been up for 7 hours and I'm totally exhausted. Got out of bed to toast me a pop tart and make a glass of chocolate(ovaltine) milk. Been freezing since waking up this morning, asked Bruce to take the A/C out of the window for the umteenth time, he never did, so I just did it. Lays on the floor under the window-he never even noticed. (During hunting season the only thing that exists in his mind is deer). I hate hunting season for just that reason, he is a good, caring man any other time. I can't seem to wrap my head around the words anymore so guess I'll sign off for now.

Sleep-or lack of

I can always tell when I've been re-infected or had a relapse when I find myself on my computer throughout the entire night. Insomnia affects nearly every lyme survivor that I know. When not in remission I sleep an average of 4 hours a night. A walking, talking zombie. I read tons about the fact that lyme causes sleep disturbances and insomnia but have yet to find out why. Given the symptoms of the disease itself, it seems little wonder that sleep would be negatively affected. People complain of not being able to fall asleep as well as awakening frequently throughout Such poor sleep (or lack of sleep altogether) at night then leads to the being excessively tired and sleepy during the day. A fair percentage of Lyme disease sufferers also complain of restless leg syndrome at night. Such fatigue, of course, can then create an environment for even more ancillary harm to the body. When we are worn out physically and mentally, we are primed for other illnesses and injuries. Such a serious disease requires consistent medical attention. However, there are many natural ways to significantly help alleviate many of the symptoms, including sleep disturbances. Creating a comfortable sleep routine and sleeping environment is especially important for anyone who suffers from sleep problems. Relaxation is a necessity in aiding sleep, so establishing a soothing nocturnal ritual can help with this aspect. A number of people tout the benefits of certain natural herbs to help with both symptom control and Lyme disease treatment. As always, do your research and consult with a trusted herbalist or other alternative treatment practitioner before attempting to cure the disease. As with all ailments, this is also an especially important time to ensure proper nutrition. It seems obvious, but often we crave the less nutritious “comfort foods” when we are in pain, are extra tired and are suffering. Those comfort foods, though, do not offer long term benefits; whereas a healthy diet will help create strength and energy which is needed to combat any health ailment. Given the many issues (many of them debilitating) that accompany Lyme disease, I offer complete sympathy to sufferers and appreciate the opportunity to share some information and to receive information that you may have.

Lyme Disease-What makes it tick?

Lyme disease tends to effect us most differently.  Many have heart palpitations, or weight gain, or seasonal, food and/or chemical allergies, yet many do not.  Some can no longer tolerate heat, or cold, or both. It makes some of us want to sleep  non stop 24/7 and others would love to be able to sleep more than just a few hours a night. 

There is one common factor though, how lyme disease makes you want to learn more, learn everything you possibly can about it.  In the past 6 years I have spent countless hours reading everything I could find on this disease.

I have read things about this disease, from the most common  to the most bizarre.  The scariest part about it all, is its all true.  The many things that this disease can do to a person are quite bizarre.  Some of the many protocols used to treat the disease are even more bizarre.  The most outrageous thing about this disease is the fact that those of us living it are far more knowledgeable about the mechanisms of Lyme Disease than most medical doctors, leaving us in a precarious predicament.  

We are now forced to research the disease on our own, find a doctor that will somewhat agree with your thoughts and move forward.  A much easier feat to write it down in a sentence then it is to practice it.  I was one of the lucky ones, my doctor not only believes in Chronic Lyme Disease, but he believes it can at least be controlled with herbs.  Lucky for me his brother is now my herbalist. 

I hope you will join me frequently as I begin to blog my way through Lyme.