It's been about 7 weeks since I've been off my meds and what a glorious sun-filled 7 weeks it's been! I have loved just floating on the lake, laying by the pool and floating down rivers and soaking up as many restorative sun rays as possible.
But it's time to go back on the meds. And I've got three weeks to do it before I'll take another break when I got to Gulf Shores.
One thing this disease has made me do is listen to my body. Right now it's crying for justice, for wellness and I must oblige.
My symptoms have become increasingly more neurologic and muscular over the past week. Neurologic symptoms include: intense brain fog, nearly constant ringing ears, cloudy eyes, loss of memory and dizzy spells.
Muscle-wise, I want to and have cried. I can't believe I'm the person I am today when I consider what I was capable of doing two years ago. I worked tirelessly on a farm, rode horses every weekend, hauled hay, moved furniture, etc., etc., etc. I worked out, walked miles, kickboxed and on the list goes.
This morning I couldn't stand through the whole worship service in church. Holding a 10-pound baby, I had to shift arms to hold her up. Tonight when I poured water for a cup of tea, I had to stop halfway through pouring and switch arms. My weakness is mindblowing.
My back hurts almost constantly, my legs feel like jell-o and hurt to the touch.
Yes, it's time to make a change.
I've been doing research on herbal supplements that are supposed to help inflammation and immune dysfunction. It's overwhelming but I'm determined to plow ahead and try a few things.
I've also heard that the FIT FOR LIFE diet guidelines has been helpful to LD patients so I bought the book yesterday and have been reading up on it. I'm not worried at this point about weight loss - my jacked up thyroid and LD has made it pretty clear I won't be losing it anytime soon. My concern lies in the toxins in my body and how much of what I currently eat is feeding the bacteria. I'm going to finish reading the book and prayerfully make some changes that will hopefully help.
Cheers to me and doxy tomorrow! I'm resuming on a half-dose to see if the nausea I'd gotten towards the end of my last round will return. If it does, it's time for a new antibiotic. Yay!
Sunday, August 16, 2009
Friday, July 31, 2009
Under Our Skin
It's been a little over a month since I've posted here. Mostly, life has been about the same.
About a month ago, I was experiencing increased nausea from the doxy. So I tried to go to a half-dose but then ended up off of it. I've been off of everything for approximately a month. It was probably mostly selfish reasons - I'd gotten to the point where the number of pills I was taking a day were making me gag. And I wanted to be out in the sun.
I guess it was like a daily reminder that life with Lyme isn't completely normal.
But regardless of the medicine, I'm reminded on a near-daily basis that that is the case.
HEADACHE - the other day I was driving and the thought crossed my mind "i wonder what it feels like to NOT have a headache." It's not a headache like any other, either. It's only on the left side of my skull, though this isn't exclusive. Sometimes it switches sides. Last week, it was just the top part of my skull, all the way around. I could place my hand on the top of my head and it hurt to the touch. I was sitting on the floor of my friend's house playing with her little girl and all of a sudden it felt like you'd driven a nail through the top of my head. I had to go lay down.
But the headache I've had most recently has been on the left side of my skull - shooting pains through my temple in an electric fashion. Sometimes, it takes my breath.
BLURRED VISION - maybe this is part of the headache - I don't know. But my vision has been blurred, like I'm looking through water.
SLEEPLESSNESS - basically, I can't sleep. It takes me FOREVER to fall asleep and when I do, I never want to wake up. My alarm goes off and I just want to sleep more. I wake up feeling as exhausted, if not more, as when I went to bed. Really, I think if given the opportunity, I could sleep for at least a day. Part of me wants to try it. The other part feels guilty.
JOINT PAIN - a couple days last week, I couldn't walk down stairs without intense pain in my left ankle. I had to walk down them sideways to make it. And coming up stairs makes my legs feel like jell-o - so weak.
MEMORY - my short-term memory and parts of my long-term memory are gone. I can't remember where I put things, what I've told people, what I've done just moments after I've done them. I try to hide it around the people I live with but I think my sister notices these little things.
WEAKNESS IN MY RIGHT HAND - it's almost as if I've had a stroke. My right hand is so weak. I've dropped at least three cups of liquid today, and numerous other things. It's frustrating. But hopefully this symptom will pass soon.
BRAIN FOG - enough said.
After all the research I've done, I really think that UNDER OUR SKIN is the best. Please visit underourskin.com for information on the film and information on Lyme Disease. Here is an excerpt from a Lyme patient. It's almost like I wrote this, I can identify with everything he's saying. He's talking about dealing with:
..."the memory loss, the feeling of drunkenness, the disorientation, the arthritis in my hands, feet, shoulders, and knees. The fatigue. The loud ringing in my ears. The terrible sleeplessness. The excruciating discomfort and pressure in my face and head from the sound of my own voice as I spoke. The difficulty and frustration communicating with others, in finding the right words. The exaggerated emotions. The numbness in my feet that would turn to burning pain and pins and needles, the stabbing pains in my legs and feet..."
(the highlighted things are things I have on a daily basis but forget to mention sometimes)
One of my good friends just got out of the hospital after being there for 8 days. She has Lyme Disease. I'll tell more of her story later....
About a month ago, I was experiencing increased nausea from the doxy. So I tried to go to a half-dose but then ended up off of it. I've been off of everything for approximately a month. It was probably mostly selfish reasons - I'd gotten to the point where the number of pills I was taking a day were making me gag. And I wanted to be out in the sun.
I guess it was like a daily reminder that life with Lyme isn't completely normal.
But regardless of the medicine, I'm reminded on a near-daily basis that that is the case.
HEADACHE - the other day I was driving and the thought crossed my mind "i wonder what it feels like to NOT have a headache." It's not a headache like any other, either. It's only on the left side of my skull, though this isn't exclusive. Sometimes it switches sides. Last week, it was just the top part of my skull, all the way around. I could place my hand on the top of my head and it hurt to the touch. I was sitting on the floor of my friend's house playing with her little girl and all of a sudden it felt like you'd driven a nail through the top of my head. I had to go lay down.
But the headache I've had most recently has been on the left side of my skull - shooting pains through my temple in an electric fashion. Sometimes, it takes my breath.
BLURRED VISION - maybe this is part of the headache - I don't know. But my vision has been blurred, like I'm looking through water.
SLEEPLESSNESS - basically, I can't sleep. It takes me FOREVER to fall asleep and when I do, I never want to wake up. My alarm goes off and I just want to sleep more. I wake up feeling as exhausted, if not more, as when I went to bed. Really, I think if given the opportunity, I could sleep for at least a day. Part of me wants to try it. The other part feels guilty.
JOINT PAIN - a couple days last week, I couldn't walk down stairs without intense pain in my left ankle. I had to walk down them sideways to make it. And coming up stairs makes my legs feel like jell-o - so weak.
MEMORY - my short-term memory and parts of my long-term memory are gone. I can't remember where I put things, what I've told people, what I've done just moments after I've done them. I try to hide it around the people I live with but I think my sister notices these little things.
WEAKNESS IN MY RIGHT HAND - it's almost as if I've had a stroke. My right hand is so weak. I've dropped at least three cups of liquid today, and numerous other things. It's frustrating. But hopefully this symptom will pass soon.
BRAIN FOG - enough said.
After all the research I've done, I really think that UNDER OUR SKIN is the best. Please visit underourskin.com for information on the film and information on Lyme Disease. Here is an excerpt from a Lyme patient. It's almost like I wrote this, I can identify with everything he's saying. He's talking about dealing with:
..."the memory loss, the feeling of drunkenness, the disorientation, the arthritis in my hands, feet, shoulders, and knees. The fatigue. The loud ringing in my ears. The terrible sleeplessness. The excruciating discomfort and pressure in my face and head from the sound of my own voice as I spoke. The difficulty and frustration communicating with others, in finding the right words. The exaggerated emotions. The numbness in my feet that would turn to burning pain and pins and needles, the stabbing pains in my legs and feet..."
(the highlighted things are things I have on a daily basis but forget to mention sometimes)
One of my good friends just got out of the hospital after being there for 8 days. She has Lyme Disease. I'll tell more of her story later....
Monday, June 15, 2009
Here we go....
My mom clarified something for me the other day when I told her my sun experiement. The sun's effect on my skin is actually a chemical reaction between the UV rays and the doxy, which is why it's not really a burn but weird-ness. Who knew?
The past couple days, I've felt back at square one. I talked to my friend today who has LD and she was like, "I've been having problems with my temperature control."
SO HAVE I!!!!!!!
The past two weeks, I've gone from BURNING UP to FREEZING in a matter of minutes. I seriously walk around with a paper plate for fanning and a jacket. And it's not just my internal temperature. I'll feel fine but my skin will either be HOT to the touch or COLD.
I've also been in a lot more pain during the last ten days. I can only sit in or lay in a position for so long before my muscles and joints hurt. I've also been experiencing my hands, feet, arms, and legs "going to sleep" after being in a position for just a matter of minutes.
Insomnia's back. Without my Tylenol or Excedrin PM, I won't be sleeping, no matter how tired I am.
My "brain fog" has also been a lot worse during the past several days. This usually means I have a hard time finding the right word or stuttering over words. It's like trying to think through sludge.
Probably the most exhausting thing right now are my episodes of adrenaline rushes. Temporal lobe seizures are connected to LD but I can't self-diagnose these episodes as being that or not. Basically, I get the feeling that I'm running for my life with all the physical manifestations - heart pounding, hands shaking, cold sweat and dizziness. But nothing of significance would have happened to trigger this response. The times it's happened is when I've experienced stress of some sort but nothing to the degree that should dump that much adrenaline into my system. They usually last for several minutes but afterwards, I'm exhausted, really feels like I've just heard the worst news ever, and I need to sleep it off.
After this happens, I have to rest.
It's been nearly five weeks since I started my medicine regimen. I think it might be time for a Dr. visit and something different.
The past couple days, I've felt back at square one. I talked to my friend today who has LD and she was like, "I've been having problems with my temperature control."
SO HAVE I!!!!!!!
The past two weeks, I've gone from BURNING UP to FREEZING in a matter of minutes. I seriously walk around with a paper plate for fanning and a jacket. And it's not just my internal temperature. I'll feel fine but my skin will either be HOT to the touch or COLD.
I've also been in a lot more pain during the last ten days. I can only sit in or lay in a position for so long before my muscles and joints hurt. I've also been experiencing my hands, feet, arms, and legs "going to sleep" after being in a position for just a matter of minutes.
Insomnia's back. Without my Tylenol or Excedrin PM, I won't be sleeping, no matter how tired I am.
My "brain fog" has also been a lot worse during the past several days. This usually means I have a hard time finding the right word or stuttering over words. It's like trying to think through sludge.
Probably the most exhausting thing right now are my episodes of adrenaline rushes. Temporal lobe seizures are connected to LD but I can't self-diagnose these episodes as being that or not. Basically, I get the feeling that I'm running for my life with all the physical manifestations - heart pounding, hands shaking, cold sweat and dizziness. But nothing of significance would have happened to trigger this response. The times it's happened is when I've experienced stress of some sort but nothing to the degree that should dump that much adrenaline into my system. They usually last for several minutes but afterwards, I'm exhausted, really feels like I've just heard the worst news ever, and I need to sleep it off.
After this happens, I have to rest.
It's been nearly five weeks since I started my medicine regimen. I think it might be time for a Dr. visit and something different.
Friday, June 12, 2009
I spent the last week at senior high camp. I packed all my meds (even my B-12 injections) and took them faithfully every single day. I knew I couldn't afford to miss a day no matter how inconvenient they were.
The first couple days, I struggled with fatigue but managed through alright. I couldn't sit in the hardback chairs for more then about 30 minutes. I spent a lot of time either standing up or sitting at the tables when my knees couldn't take any more standing. When my back and neck started hurting from that, I moved to the floor. By that time, the speaking was usually over and we were good.
One thing - I got a wonderful massage twice while I was there and decided I needed that more often. It made such a huge difference.
I ran a lot on Tuesday in a game of capture of the flag. I've paid for it since then with fatigued legs and muscles. In the mornings, I could barely make it from the dorms to the main building without my legs hurting so bad and being a little winded.
My feet bothered me the first few days and then stopped itching. I noticed tonight that both of my ankles are extremely swollen and red - not really sure what's going on there. They also feel weak and jell-o like. Who knows.
Vision - blurry.
Focus - blurry.
Brain - a little foggy.
I'm a little worried to see how the next couple of days go. I'm expecting a relapse after expending that much energy over the past five days.
However, I don't regret it. It was truly a life changing experience...more on that on the other blog.
The first couple days, I struggled with fatigue but managed through alright. I couldn't sit in the hardback chairs for more then about 30 minutes. I spent a lot of time either standing up or sitting at the tables when my knees couldn't take any more standing. When my back and neck started hurting from that, I moved to the floor. By that time, the speaking was usually over and we were good.
One thing - I got a wonderful massage twice while I was there and decided I needed that more often. It made such a huge difference.
I ran a lot on Tuesday in a game of capture of the flag. I've paid for it since then with fatigued legs and muscles. In the mornings, I could barely make it from the dorms to the main building without my legs hurting so bad and being a little winded.
My feet bothered me the first few days and then stopped itching. I noticed tonight that both of my ankles are extremely swollen and red - not really sure what's going on there. They also feel weak and jell-o like. Who knows.
Vision - blurry.
Focus - blurry.
Brain - a little foggy.
I'm a little worried to see how the next couple of days go. I'm expecting a relapse after expending that much energy over the past five days.
However, I don't regret it. It was truly a life changing experience...more on that on the other blog.
Sunday, June 7, 2009
Allergic reaction to...sun?
My experiment from yesterday (allowing myself exposure to the sun in controlled, limited amounts) has transferred over to today.
My feet are very, very angry with me.
For some odd reason, it's just the tops of both my feet, a space about the size of a dollar bill, that's red, inflamed, feverish, and covered with itchy, microscopically tiny bumps. The hem of my pants brushing against it is irritating.
The only part of my foot that's not irritable are the soles and the thong indention where my flipflops protected the skin.
Here's a picture for proof:
I will admist that I'm enjoying having physical, tangible evidence to post, as if to prove that what I'm dealing with isn't in my head. As those with LD know all too well, 99.9999 percent of the things we deal with cannot be photographed.
My feet are very, very angry with me.
For some odd reason, it's just the tops of both my feet, a space about the size of a dollar bill, that's red, inflamed, feverish, and covered with itchy, microscopically tiny bumps. The hem of my pants brushing against it is irritating.
The only part of my foot that's not irritable are the soles and the thong indention where my flipflops protected the skin.
Here's a picture for proof:
I will admist that I'm enjoying having physical, tangible evidence to post, as if to prove that what I'm dealing with isn't in my head. As those with LD know all too well, 99.9999 percent of the things we deal with cannot be photographed.
Saturday, June 6, 2009
Sun exposure and today's Lyme-related weirdness
Sun exposure:
The biggest part of my initial treatment is 400 mg of doxycycline a day - double the amount of a regular recommended dose to treat infection, etc. It's been drilled in my head that with this high dosage, it is imperative for me to stay out of the sun because the drug makes my skin translucent-like and I could suffer from severe burns if I'm over exposed.
I noticed shortly after starting treatment that my hands and arms were being exposed to sunlight while driving. I tried to take care to cover them but still, they were getting sun. A space about a half dollar size between my right pointer and middle finger began peeling and left brand new (white) skin underneath - enough to garner questions about what was wrong.
But I noticed that the controlled and limited amounts of sunlight did not intensely burn. It actually left me with a really dark tan from my fingers to my mid-upper arm. Talk about a farmer's tan!
So today I decided to test my theory with limited amounts of sunshine to the rest of my body.
I spent about 25 minutes of exposed sunlight (broken up into two sessions) on my upper body, lower body and feet.
My feet and ankles are suffering tonight. They are on fire and they ITCH, which I suspect is a type of allergic reaction to the sun. The rest of my body is handling it okay - I just feel very hot, like I've been in the sun for hours on end...on the lake, to make it worse.
But perhaps it'll be worth it, if I can figure out the right amount of time to be in the sun. It'll be trial and error and hopefully that error won't land me with bad burns!
Weird-ness:
I've been on my new treatment for about three weeks and I was feeling really great. Today I had a few setbacks.
My brain feels very foggy (a.k.a. Lyme-fog) and my eyesight is blurred. I'm having a hard time retracting information from my mind or remembering things. I've gone to say things today but had to rehearse it in my head first and by the time I was ready to say it, the time had already passed and the other person was probably wondering why I didn't respond.
I had two bouts of excessive adrenaline - I can't really think of any other way to explain it. My heart was racing, my hands shaking, my body felt weak and trembling and I had to think if there had been an adrenaline-causing incident beforehand to cause that reaction. There really hadn't been. These episodes are exhausting.
I watched my neice today and could not hold her for nearly as long as I should have been able to. She weighs about 18 pounds but I could only hold her for limited amounts of time before I had to lay her down. It's a small thing I noticed just because it serves as a plumb-line for my strength.
Despite all that today, it was really a god day. I got a lot of things accomplished and enjoyed getting them done.
The biggest part of my initial treatment is 400 mg of doxycycline a day - double the amount of a regular recommended dose to treat infection, etc. It's been drilled in my head that with this high dosage, it is imperative for me to stay out of the sun because the drug makes my skin translucent-like and I could suffer from severe burns if I'm over exposed.
I noticed shortly after starting treatment that my hands and arms were being exposed to sunlight while driving. I tried to take care to cover them but still, they were getting sun. A space about a half dollar size between my right pointer and middle finger began peeling and left brand new (white) skin underneath - enough to garner questions about what was wrong.
But I noticed that the controlled and limited amounts of sunlight did not intensely burn. It actually left me with a really dark tan from my fingers to my mid-upper arm. Talk about a farmer's tan!
So today I decided to test my theory with limited amounts of sunshine to the rest of my body.
I spent about 25 minutes of exposed sunlight (broken up into two sessions) on my upper body, lower body and feet.
My feet and ankles are suffering tonight. They are on fire and they ITCH, which I suspect is a type of allergic reaction to the sun. The rest of my body is handling it okay - I just feel very hot, like I've been in the sun for hours on end...on the lake, to make it worse.
But perhaps it'll be worth it, if I can figure out the right amount of time to be in the sun. It'll be trial and error and hopefully that error won't land me with bad burns!
Weird-ness:
I've been on my new treatment for about three weeks and I was feeling really great. Today I had a few setbacks.
My brain feels very foggy (a.k.a. Lyme-fog) and my eyesight is blurred. I'm having a hard time retracting information from my mind or remembering things. I've gone to say things today but had to rehearse it in my head first and by the time I was ready to say it, the time had already passed and the other person was probably wondering why I didn't respond.
I had two bouts of excessive adrenaline - I can't really think of any other way to explain it. My heart was racing, my hands shaking, my body felt weak and trembling and I had to think if there had been an adrenaline-causing incident beforehand to cause that reaction. There really hadn't been. These episodes are exhausting.
I watched my neice today and could not hold her for nearly as long as I should have been able to. She weighs about 18 pounds but I could only hold her for limited amounts of time before I had to lay her down. It's a small thing I noticed just because it serves as a plumb-line for my strength.
Despite all that today, it was really a god day. I got a lot of things accomplished and enjoyed getting them done.
Re-infection bite
After being diagnosed with Lyme Disease and Q-fever in March 2008, I was reinfected with this tick bite about two weeks ago. I'm posting this for my friend's and other people's benefit.This is the classic "bulls-eye rash" surrounding the tick bite - a key indicator that the tick was carrying Lyme Disease. It's necessary to note that 70 percent of the time, the rash will manifest, indicating an LD positive bite. The other 30 percent of the time there is no rash. I cannot remember the specific tick bite that infected me the first time because there was no bulls eye. This time, however, there's no mistaking it.
The Kentucky Cabinet for Health and Family Services reported in January 2008 that the "species of ticks that are known to transmit Lyme Disease have not been identified in Kentucky at this time."
I beg to differ.
Introduction
The purpose of this blog is to document my own personal journey with Lyme Disease and to perhaps one day be a sounding board and support network for other individuals with this disease.
As those who carry the disease with them know, it's hard for the people around us, even our closest friends and relatives, to truly understand how this disease effects every aspect of our lives. Hopefuly by providing an outlet for our experiences we can support each other and one day bring about the beauracratic change that must take place in order for us to receive the treatment we need.
Please, leave comments, e-mail me - I want to hear from you.
As those who carry the disease with them know, it's hard for the people around us, even our closest friends and relatives, to truly understand how this disease effects every aspect of our lives. Hopefuly by providing an outlet for our experiences we can support each other and one day bring about the beauracratic change that must take place in order for us to receive the treatment we need.
Please, leave comments, e-mail me - I want to hear from you.
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