Right now I feel as if I could jump out of my skin. The A-Team girl just wrote a fabulous explanation of what it is like to swing up and down in Lymes disease. I can't express how many people have told me, "Well, you really don't look that sick!!"
My response? You are seeing me on a great day.
Now that I am back in school, I have to drag myself out of the house even if I don't feel well. And that takes a toll on the seemingly-ok person in the mirror. Wednesday of last week was an absolute Herx, with me literally sleeping all day long. I had to call my doctor to ask for a note to excuse me from required activities.
Due to lack of testing accomodations and the physical results of extremely high stress, I failed my first class. Technically I am supposed to go to every class. However, my body will not let me. It is a case of damned if you do and damned if you don't, because if I go to class all day every day, then I will not have the strength to study at night, and my daylight hours will have been wasted. If I come to required classes and labs only, then I am doing my best to conserve my strength and have some energy to expend on studying. It is really a rock and a hard place.
Anyway, I will be testing for almost seven hours tomorrow. I get five hours for the written and about two for the practical. So send me good thoughts, as I have done a LOT to prep for this bad boy!! :) I actually am feeling good about going in and showing off what I know. Amazing!!!
Sunday, October 31, 2010
alyson1derland: The Carousel Disease
If you've ever spent any time around someone with Lyme Disease, you are probably pretty baffled. How is it that one minute they can be too sick to walk, and the next minute they are running around like a wild person, full of energy? One minute, they need to be carried up the steps, and the next minute, they are bouncing down the steps to answer the door. One day they can make a four-course meal, and the next day, they walk away from the stove until the smoke alarm goes off, reminding them that they were actually in the middle of making dinner!
Migrating symptoms are a hallmark of Lyme Disease. Sometimes I refer to it as the Carousel Disease, because my days are constantly up and down. No one has been able to explain to me what causes these ever-changing symptoms, but it is one of the most frustrating parts of the disease. People who don't understand Lyme Disease assume you are faking your illness. It's very hard for people to understand why I have days when I can actually ride a horse, and other days when I have to be carried from my bed to the bathroom.
You may look at me, and I may not look the slightest bit sick to you. But inside my body, there is so much going on that you can't see! So for those of you who are ready, hop on the carousel of Lyme Disease for a spin with me!
Imagine someone has strapped lead weights on your legs. Now your legs are heavy, achy, and hard to move. Getting around is quite a chore, but you can do it!
Now, imagine your brain is filled with cotton (hard to picture, but bear with me!). The simplest of decisions are now a major struggle for you, and you can't remember what you were saying or thinking. You can no longer answer a simple question like "should I have a snack?" You can no longer figure out simple math questions like 12-5. You constantly forget to eat your snack, and drink the tea you just made. You forget simple words. You haven't the faintest idea of what you did this morning, let alone yesterday!
Now picture someone taking a drill and boring into your hips, causing a deep, slow ache. It hurts when you walk, it hurts when you sit, it hurts when you lay down. Your fingers feel like someone is stabbing them with needles. Your knees feel like someone is banging on them with a hammer.
Mentally, you are very agitated, like someone is scraping their fingers down a chalkboard close to your ears. You head is throbbing, you are tense, and you feel as though you are ready to blow at any moment!
And just as suddenly as you hopped on the carousel, you hop off. The ride is over. Your head stopped throbbing. Your hips are only a dull ache now, not nearly as intense. You can walk easier now, but all that riding on the carousel has left you a little dizzy. Whoever was scraping their fingers down the chalkboard, has stopped, and now you're only mildly agitated. You don't feel like there are lead weights on your legs anymore, but you are left with a flu-like ache in your body. You suddenly remember a million things that you were supposed to do. Like a kitten running through the house, you dart around trying to make up for lost time, all the while wondering when the carousel ride is going to start back up. It might be soon. It might not be until tomorrow. You don't know what the ride will be like next time or how long it will last. But for now, you are happy that your quarter ran out, and the ride is over.
Friday, October 29, 2010
alyson1derland: My Lyme Disease Story
My journey with Lyme Disease
In October of 2009, I started developing mysterious symptoms. First came odd visual problems and trouble reading. It felt like there was constantly a fog on my glasses that I couldn't seem to wipe off. This persisted off and on for several months and I began getting headaches.
In late January of this year, I developed a sinus infection that wouldn't go away. I went to the doctor and got put on antibiotics. That's when all hell broke loose!
I became totally bedridden for months. The doctor said I had mono, but it quickly became apparent to me that something else was going on. I developed HORRIBLE burning and stabbing muscle pain that started in my ankles and over the weeks worked its way up my legs (there are just no words to describe the amount of pain I was in at that point!!). I started getting really nervous, thinking that whatever it was, was making its way up my body and about to attack my organs next! I was having panic attacks left and right. My pain was so bad, I literally wanted to die.
My doctor gave me Darvocet, but it didn't touch the amount of pain I was in. I called his office on numerous occasions crying and begging for something to help me with my pain. I have a very high tolerance to pain, but I was crawling across the ceiling in agony! He said to try Aleve for the pain. Darvocet didn't touch my pain, and this doctor thought Aleve would help?!
He did do something that helped, though. He put me on two antidepressants, Zoloft and Trazadone. He said that Trazadone is used for chronic pain, and when used together with Zoloft, they start working in a week or two (instead of a month or two). It did help, and since I've been on it, I no longer get the terrible shooting pains up and down my legs that were unbearable.
I kept developing more and more symptoms, but my tests kept coming back normal. I switched doctors so many times, desperate for help, but no one seemed to believe that there was anything wrong. I kept hearing that it was all in my head and that I should see a psychiatrist. I couldn't take care of my kids anymore. I could barely walk and many times I had to be carried up the steps. I developed joint pain and arthritis in my hands. And then there was the pain. Undescribable pain!
At one point, I was sent to a rheumatologist, who upon examining my fingers which were starting to curve and bend from arthritis and were too swollen for me to wear my wedding ring told me, "Sometimes when we don't feel well, we notice things about our bodies that we wouldn't normally notice." Was this person REALLY implying that I was making up joint pain and swelling?! She said all my blood work was normal and there was nothing wrong with me and our appointment was done.
I knew someone with Lyme Disease, and some of her symptoms were very similar to mine, so I started researching it and I realized that I had an incredible number of symptoms. I found a great doctor, known among Lyme patients as an LLMD (Lyme literate doctor). She tested me and I came back highly positive for Lyme Disease.
I've had symptoms of Lyme for years, and misdiagnosis after misdiagnosis. Lyme is so hard to diagnose because the symptoms are ever-changing. What hurts one day doesn't necessarily hurt the next day. Also, no two cases of Lyme Disease are the same. You can get any and all combination of symptoms.
I started long-term antibiotic treatment in August. I don't know how long it will take before I am well again. For some people, particularly those who've been shuffled from doctor to doctor before getting the correct diagnosis, it can take many years. I have good days and bad days. I am very limited in what I can do, and I am in a lot of pain on a daily basis.
I don't want people to think I'm writing this for sympathy or pity. I write it because people don't know the facts about Lyme Disease. Did you know that fewer than 50% of people ever recall a tick bite? Fewer than 50% get the telltale bull's-eye rash associated with Lyme Disease. Did you know that a tick can be the size of the period at the end of this sentence? If you went to your doctor and asked to be tested for Lyme Disease, most likely you would be told that Lyme Disease doesn't exist here. I am living proof that this isn't true!
I hope my story inspires you to take the time to learn the facts about Lyme Disease. It is supposedly "rare" in my area. But I'll let you in on a secret: I'm not the only one here with Lyme Disease! Not even close. There are lots of us, here, there, and everywhere!
For a list of symptoms, please visit this site: www.canlyme.com/patsymptoms.html
In October of 2009, I started developing mysterious symptoms. First came odd visual problems and trouble reading. It felt like there was constantly a fog on my glasses that I couldn't seem to wipe off. This persisted off and on for several months and I began getting headaches.
In late January of this year, I developed a sinus infection that wouldn't go away. I went to the doctor and got put on antibiotics. That's when all hell broke loose!
I became totally bedridden for months. The doctor said I had mono, but it quickly became apparent to me that something else was going on. I developed HORRIBLE burning and stabbing muscle pain that started in my ankles and over the weeks worked its way up my legs (there are just no words to describe the amount of pain I was in at that point!!). I started getting really nervous, thinking that whatever it was, was making its way up my body and about to attack my organs next! I was having panic attacks left and right. My pain was so bad, I literally wanted to die.
My doctor gave me Darvocet, but it didn't touch the amount of pain I was in. I called his office on numerous occasions crying and begging for something to help me with my pain. I have a very high tolerance to pain, but I was crawling across the ceiling in agony! He said to try Aleve for the pain. Darvocet didn't touch my pain, and this doctor thought Aleve would help?!
He did do something that helped, though. He put me on two antidepressants, Zoloft and Trazadone. He said that Trazadone is used for chronic pain, and when used together with Zoloft, they start working in a week or two (instead of a month or two). It did help, and since I've been on it, I no longer get the terrible shooting pains up and down my legs that were unbearable.
I kept developing more and more symptoms, but my tests kept coming back normal. I switched doctors so many times, desperate for help, but no one seemed to believe that there was anything wrong. I kept hearing that it was all in my head and that I should see a psychiatrist. I couldn't take care of my kids anymore. I could barely walk and many times I had to be carried up the steps. I developed joint pain and arthritis in my hands. And then there was the pain. Undescribable pain!
At one point, I was sent to a rheumatologist, who upon examining my fingers which were starting to curve and bend from arthritis and were too swollen for me to wear my wedding ring told me, "Sometimes when we don't feel well, we notice things about our bodies that we wouldn't normally notice." Was this person REALLY implying that I was making up joint pain and swelling?! She said all my blood work was normal and there was nothing wrong with me and our appointment was done.
I knew someone with Lyme Disease, and some of her symptoms were very similar to mine, so I started researching it and I realized that I had an incredible number of symptoms. I found a great doctor, known among Lyme patients as an LLMD (Lyme literate doctor). She tested me and I came back highly positive for Lyme Disease.
I've had symptoms of Lyme for years, and misdiagnosis after misdiagnosis. Lyme is so hard to diagnose because the symptoms are ever-changing. What hurts one day doesn't necessarily hurt the next day. Also, no two cases of Lyme Disease are the same. You can get any and all combination of symptoms.
I started long-term antibiotic treatment in August. I don't know how long it will take before I am well again. For some people, particularly those who've been shuffled from doctor to doctor before getting the correct diagnosis, it can take many years. I have good days and bad days. I am very limited in what I can do, and I am in a lot of pain on a daily basis.
I don't want people to think I'm writing this for sympathy or pity. I write it because people don't know the facts about Lyme Disease. Did you know that fewer than 50% of people ever recall a tick bite? Fewer than 50% get the telltale bull's-eye rash associated with Lyme Disease. Did you know that a tick can be the size of the period at the end of this sentence? If you went to your doctor and asked to be tested for Lyme Disease, most likely you would be told that Lyme Disease doesn't exist here. I am living proof that this isn't true!
I hope my story inspires you to take the time to learn the facts about Lyme Disease. It is supposedly "rare" in my area. But I'll let you in on a secret: I'm not the only one here with Lyme Disease! Not even close. There are lots of us, here, there, and everywhere!
For a list of symptoms, please visit this site: www.canlyme.com/patsymptoms.html
Lyme Beast: Weekend Layout
With the two letter grade jump (can you tell I'm excited??) due to testing accomodations, I am starting to get psyched about Monday. One caveat: Monday will be 7 hours of testing. Yes. 7 hours. Therefore, I will need a lot of coffee and lots of little things to nibble on and egads of scratch paper. And plenty of extra pencil lead.
But anyway, I digress. Here is the weekend's plans:
Friday
wrap up all objectives
finalize formatting of objectives
print and organize objectives into binders
decide on bicillin shot tonight or on Saturday...
Saturday
review objectives
make summary ppt of all pictures from histo
make summary ppt of all guide ppts
do some horse grooming :)
Halloween hay ride
Sunday
meet momma
review, review, review
at least one load of laundry
pack food for Monday's test-a-thon
sleep!
Monday
kick butt and take names :)
But anyway, I digress. Here is the weekend's plans:
Friday
wrap up all objectives
finalize formatting of objectives
print and organize objectives into binders
decide on bicillin shot tonight or on Saturday...
Saturday
review objectives
make summary ppt of all pictures from histo
make summary ppt of all guide ppts
do some horse grooming :)
Halloween hay ride
Sunday
meet momma
review, review, review
at least one load of laundry
pack food for Monday's test-a-thon
sleep!
Monday
kick butt and take names :)
Thursday, October 28, 2010
Lyme Beast: Success...in ways.
Success, as most of us with Lyme know, is sometimes one step forward and then three steps right. And maybe a wiggle back.
But I have one excellent success to report. Tuesday's exam came in two letter grades higher than the previous one. I credit this to testing accomodations, as my brain still works, but it works slowly.
After the long day of testing, I came home and rode the Big Mare. She was rather obnoxious, as she is big and spoiled and convinced she is the Queen. However, her big obnoxious antics did not even bother me. This ruffled her feathers quite a bit, as she is used to me getting tired and thereby getting her way if she keeps fussing. This time, she found that I could flex her nose to my boot if she was going to attempt to spin and rear! :) So success.
However, after that day I flared rather nastily. I didn't get any hw done Tuesday, and Wednesday was a total mess as I came home early and crawled under the blankets to sleep. Today I called my doctor for a note to excuse my absence from school, as I wasn't going to risk staying flared because I wanted to tough it out.
Monday is a monster exam. Monster. So it is very important that I get rested and studied to the max for it.
But in terms of things accomplished? I scored. :)
But I have one excellent success to report. Tuesday's exam came in two letter grades higher than the previous one. I credit this to testing accomodations, as my brain still works, but it works slowly.
After the long day of testing, I came home and rode the Big Mare. She was rather obnoxious, as she is big and spoiled and convinced she is the Queen. However, her big obnoxious antics did not even bother me. This ruffled her feathers quite a bit, as she is used to me getting tired and thereby getting her way if she keeps fussing. This time, she found that I could flex her nose to my boot if she was going to attempt to spin and rear! :) So success.
However, after that day I flared rather nastily. I didn't get any hw done Tuesday, and Wednesday was a total mess as I came home early and crawled under the blankets to sleep. Today I called my doctor for a note to excuse my absence from school, as I wasn't going to risk staying flared because I wanted to tough it out.
Monday is a monster exam. Monster. So it is very important that I get rested and studied to the max for it.
But in terms of things accomplished? I scored. :)
Tuesday, October 26, 2010
Lyme Beast: October 26 Double Whammy
Today, October 26, is a double whammy of Lyme fun.
First off is an 8 am written.
Second is the practical...and I'm lucky to have mine at 1:28 pm. Hurrah!
This is my first exam with testing accomodations (for those of you who are also in school, doing a full neuropsychiatric evaluation to determine exactly how the Lyme Beast has affected your mental capability is a good thing. The letter from my specialist was supporting evidence, but not enough on its own.). Hurrah for that.
This is also the first time I have plotted my sleep schedule to ensure peak performance at the testing time. We will see how that plays out with the results of the exam. A good thing is that the tests are too far apart, but are far enough apart to allow some R&R (aka more studying) in between.
Tonight will be:
dropping off a letter
grabbing some frozen berries and bananas for the am protein shakes
prepping for a quiz on blood and muscle
working on objectives
getting some sleep
I would like to:
make a list of supplements
make a list of medications
laminated, for carrying around with me. It is a pain not to be able to tell someone what you are on because there is so much of it.
First off is an 8 am written.
Second is the practical...and I'm lucky to have mine at 1:28 pm. Hurrah!
This is my first exam with testing accomodations (for those of you who are also in school, doing a full neuropsychiatric evaluation to determine exactly how the Lyme Beast has affected your mental capability is a good thing. The letter from my specialist was supporting evidence, but not enough on its own.). Hurrah for that.
This is also the first time I have plotted my sleep schedule to ensure peak performance at the testing time. We will see how that plays out with the results of the exam. A good thing is that the tests are too far apart, but are far enough apart to allow some R&R (aka more studying) in between.
Tonight will be:
working on objectives
I would like to:
make a list of supplements
make a list of medications
laminated, for carrying around with me. It is a pain not to be able to tell someone what you are on because there is so much of it.
Lyme Beast
Purpose: To chronicle coping with the Lyme Beast in my life.
Added fun is whatever else I encounter in the process.
Added fun is whatever else I encounter in the process.
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