I found this while scrolling through old Face Book posts. It is STILL exactly how I feel. Because I feel it defines who I am I wanted to share it to my blog...
Right now my favorite line people give me, "You look GREAT! You must be feeling so much better!" Umm... Well that's dependent on the day or the week or the hour or even the minute. NO this is not the flu that you get over in a few days or even a couple of weeks (even with treatment). This is an illness that may never go away completely. I've had this bacteria in my body for 35 years! That's a loooong time for it to get into my brain, my bones, my heart, my intestines, my thyroid, my lungs, my joints, my muscles, and anywhere else it wants to hide. And hide it does. Very well. It is the master of deception and disguise. Does this means the treatment I'm getting now is going to work? Yep! But, to get rid of the bacteria completely? Probably not. I will more then likely deal with "flares" the rest of my life. This is the reality of Chronic Lyme Disease. Do I "look" like I am sick. No. I don't. I totally understand that. But what does that have to look like in order for people to understand you have an illness that makes you spend time in bed, not be able to drive, make you cancel plans with friends, not be able to keep up with the simple things in life such as laundry, cleaning your house and getting dinner for your family? The seizures alone are enough to make most people cancel their life. Not me. I'm a stubborn stalwart idiot sometimes but I am a warrior. I'm a survivor. I will not let Lyme Disease define me as a person or take my identity. I have an infection plain and simple. But that does not mean I am the infection. So I get my body out of bed and push through the stiffness of super sore muscles and joints that don't want to move. Pain? What's that? Oh yeah. Something I've lived with so long I laugh at it and go on about my day doing as much as I can that day until my body says stop. I smile. I serve. And I love. THAT is who I am. P.S. If you're one of the sweet kind people that have said this to me don't feel bad. I understand it's said out of hope and love. Hope that I am getting better. Which I am. I am feeling better but I'm not better. I'm on the road to recovery for sure. But I am still suffering with seizures and pain (as well as other things) I also just want to give awareness to chronic illness and maybe educate what it's like to live with it. I truly do love you all... |
Tuesday, May 3, 2016
Who am I??? THIS is who I am!
Monday, May 2, 2016
Broken Glass and Herxing
For this post I decided I wanted to talk about the, dreaded among the Lyme community, phenomenon called Herxheimer.
"The technical definition for a Herxheimer Reaction (i.e., herxing or die off) is the release of endotoxins from the destroyed cell walls of the bacteria responsible for Lyme Disease, Borrelia Burgdorferi, that causes an additional inflammatory response (i.e., debilitating physical and mental state) contingent to the amount of endotoxins released, which is directly correlated to the amount of Lyme bacteria killed (i.e., lysed)."
Sited from http://www.tiredoflyme.com/the-herxheimer-reaction.html
Layman's terms and what that means to me...
The evil beasts implode and release all their vile toxins (which causes a horrific worsening of all your Lyme symptoms) when they come in contact with antibiotics because the antibiotics eat away the outer shell of their bodies. My body cannot rid itself of the toxic waste as quickly as it's being produced. The more of these beasties you have the worse the herx. Apparently I have a lot of them...
Waking in the morning is the worst part of my day. Sometimes the pain in my joints is so bad that getting out of bed to step on my feet is something akin to someone walking on broken glass. Except the glass feels like shards implanted inside the tissues of my feet and joints. It can be excruciating. I tell my hubby that if the tears are rolling down my face it means it's gone beyond Hell into a whole different dimension. But seriously you have to get up to go to the bathroom... I've had times the pain is so intense I've fallen to the floor in agony and literally tried to crawl to make it to the toilet.
My hands can have that same feeling too. Even attempting to open a pill bottle creates pain that is too much to bare. Meaning I have to call my family to help me so I can start my days regiment of prescriptions, supplements, vitamins, and homeopathics. Sometimes the pain is so bad that I can't cut a pancake... Just holding the fork is agony let alone exerting pressure. Days like that I usually spend mostly in bed. It's just not worth the agony to try to allow gravity to exert it's force on my bones.
With the pain comes increased petit mal seizures (I have been known to have 18-20 seizures lasting anywhere between 10 minutes to an hour in a single day) and a headache that makes a migraine seem like child's play. Fortunately my amazing brilliant Doc does these shots he calls Neuro Therapy that help kill the nerves in my head and neck but we never seem to kill all of them... New ones crop up every time unfortunately. I call these headaches ice pic headaches. It's fitting. I can never decide if the pain is so intense it causes a petit mal seizure to happen or if it's an indication that one is about to occur. Since both ways happen it's really hard to say. More about the seizures since it's been one of my most scary main symptoms and I feel I know a lot about them in another post.
The brain fog and forgetfulness can be pretty intense during a herx too. It's weird the things I've forgotten. One day I literally couldn't remember how to look something up on the computer. My daughter had to help me step by step. Mom you need to go to Google and type in what you need to search for, now press enter, etc. That time I actually cried because I felt that my mind was going like an old lady that has Alzheimer or Dementia. Pretty scary. I've forgotten simple things like how to put your key into the ignition, can't for the life of you remember your grade school age kids' teacher's name when calling the office to excuse said child, let alone the things you misplace or put in the wrong place such as milk in the cupboard, etc...
Words can come out totally jumbled up too. It makes for the most interesting and funny conversations! Sometimes I have seizures that are stutter seizures and I literally can't say certain vowel sounds without getting stuck like a scratched record player on that vowel sound. FL~FL~FL~FL~FL~FL~FL~FL~FL over and over... So I search for alternative words that don't have that particular vowel sound, such as if I was trying to say Floor but the F sound won't come out I would have to pause and think of another word such as Ground! I always feel so successful when I can accomplish that feat so I can keep communicating. Try the S sound. Do you realize that most of our language is centered around making that sound??? If you don't believe me then try to say just 1 full sentence not using that sound... Impossible. I cried that time too cause I was so incredibly frustrated.
Overall the feeling of herxing is close to the feeling you have when you have the worst flu you've had of your life times about 100. Your skin hurts like fire to touch. Your joints hurt to move. Your bones ache. Your muscles feel like they've been torn to shreds. Your head hurts like an ice pick is being stabbed repeatedly through it. Your teeth and jaws hurt worse then any toothache you've ever experienced. Your intestines hurt so bad it feels like a constant burning pain (in fact sometimes you can literally feel a fever coming from where the pain is). Your heart beats a million miles a minute and you swear you can see it pounding out of your chest. Your muscles are so incredibly weak that you scoot up and down stairs (that is if you can even make it out of bed) and brushing your teeth is a luxury cause you can't summon the strength to hold the brush (I'm not kidding).
You can't breath both due to your lungs seizing up and not working cause of seizures (remember lungs are a muscle) and severe "air hunger". You have constant ringing in your ears and sometimes major ear pain due to having "congested ears". The fatigue is so deep it's hard to describe just how severe that feeling is. I can sleep 16-18 hours on those days. Your eyes feel like you're going blind quite literally. I see double and then one eye turns "off" and I can't see out of it so I really do go temporarily blind in that eye until the herx is over. I fear that I may someday have my sight taken in that eye. Blindness has been known to happen with Lyme Disease. Scary eh?
On these days I just endure. With my Heavenly Father's help and my Savior's they are THE only reason I haven't given up. I am in constant prayer to survive and I am answered by being held up by Angels quite literally. I have felt them. It's true! I've literally felt my Grandma Mer sitting beside me when I've had to endure a seizure by myself. It is WAY beyond any kind of Hell you can imagine. One day we (people that have Lyme) will get the recognition, compassion, and understanding we deserve. This disease will be recognized as THE most painful, debilitating disease known to mankind. I can't wait for that day. "Cancer is nothing compared to this... to treat as well as for the patients to deal with the symptoms from it. It is THE most complex disease which is why doctors don't want to and won't deal with it." Quote from 2 different doctors that treat both. And yet we don't get the help at all that cancer patients do. Some day I know this will change. Which is why I'm writing this blog. Not to gain sympathy but to give understanding. I feel it's my mission...
If you're reading my blog and you have Lyme Disease I hope I have done it justice in this too short of blog post. If I really tried to tell everything it would be so long I'm afraid people wouldn't read it. Let me know in the comments other ways you Lyme Warriors suffer. For you that don't have it....
BE GRATEFUL!
"The technical definition for a Herxheimer Reaction (i.e., herxing or die off) is the release of endotoxins from the destroyed cell walls of the bacteria responsible for Lyme Disease, Borrelia Burgdorferi, that causes an additional inflammatory response (i.e., debilitating physical and mental state) contingent to the amount of endotoxins released, which is directly correlated to the amount of Lyme bacteria killed (i.e., lysed)."
Sited from http://www.tiredoflyme.com/the-herxheimer-reaction.html
Layman's terms and what that means to me...
The evil beasts implode and release all their vile toxins (which causes a horrific worsening of all your Lyme symptoms) when they come in contact with antibiotics because the antibiotics eat away the outer shell of their bodies. My body cannot rid itself of the toxic waste as quickly as it's being produced. The more of these beasties you have the worse the herx. Apparently I have a lot of them...
Waking in the morning is the worst part of my day. Sometimes the pain in my joints is so bad that getting out of bed to step on my feet is something akin to someone walking on broken glass. Except the glass feels like shards implanted inside the tissues of my feet and joints. It can be excruciating. I tell my hubby that if the tears are rolling down my face it means it's gone beyond Hell into a whole different dimension. But seriously you have to get up to go to the bathroom... I've had times the pain is so intense I've fallen to the floor in agony and literally tried to crawl to make it to the toilet.
My hands can have that same feeling too. Even attempting to open a pill bottle creates pain that is too much to bare. Meaning I have to call my family to help me so I can start my days regiment of prescriptions, supplements, vitamins, and homeopathics. Sometimes the pain is so bad that I can't cut a pancake... Just holding the fork is agony let alone exerting pressure. Days like that I usually spend mostly in bed. It's just not worth the agony to try to allow gravity to exert it's force on my bones.
With the pain comes increased petit mal seizures (I have been known to have 18-20 seizures lasting anywhere between 10 minutes to an hour in a single day) and a headache that makes a migraine seem like child's play. Fortunately my amazing brilliant Doc does these shots he calls Neuro Therapy that help kill the nerves in my head and neck but we never seem to kill all of them... New ones crop up every time unfortunately. I call these headaches ice pic headaches. It's fitting. I can never decide if the pain is so intense it causes a petit mal seizure to happen or if it's an indication that one is about to occur. Since both ways happen it's really hard to say. More about the seizures since it's been one of my most scary main symptoms and I feel I know a lot about them in another post.
The brain fog and forgetfulness can be pretty intense during a herx too. It's weird the things I've forgotten. One day I literally couldn't remember how to look something up on the computer. My daughter had to help me step by step. Mom you need to go to Google and type in what you need to search for, now press enter, etc. That time I actually cried because I felt that my mind was going like an old lady that has Alzheimer or Dementia. Pretty scary. I've forgotten simple things like how to put your key into the ignition, can't for the life of you remember your grade school age kids' teacher's name when calling the office to excuse said child, let alone the things you misplace or put in the wrong place such as milk in the cupboard, etc...
Words can come out totally jumbled up too. It makes for the most interesting and funny conversations! Sometimes I have seizures that are stutter seizures and I literally can't say certain vowel sounds without getting stuck like a scratched record player on that vowel sound. FL~FL~FL~FL~FL~FL~FL~FL~FL over and over... So I search for alternative words that don't have that particular vowel sound, such as if I was trying to say Floor but the F sound won't come out I would have to pause and think of another word such as Ground! I always feel so successful when I can accomplish that feat so I can keep communicating. Try the S sound. Do you realize that most of our language is centered around making that sound??? If you don't believe me then try to say just 1 full sentence not using that sound... Impossible. I cried that time too cause I was so incredibly frustrated.
Overall the feeling of herxing is close to the feeling you have when you have the worst flu you've had of your life times about 100. Your skin hurts like fire to touch. Your joints hurt to move. Your bones ache. Your muscles feel like they've been torn to shreds. Your head hurts like an ice pick is being stabbed repeatedly through it. Your teeth and jaws hurt worse then any toothache you've ever experienced. Your intestines hurt so bad it feels like a constant burning pain (in fact sometimes you can literally feel a fever coming from where the pain is). Your heart beats a million miles a minute and you swear you can see it pounding out of your chest. Your muscles are so incredibly weak that you scoot up and down stairs (that is if you can even make it out of bed) and brushing your teeth is a luxury cause you can't summon the strength to hold the brush (I'm not kidding).
You can't breath both due to your lungs seizing up and not working cause of seizures (remember lungs are a muscle) and severe "air hunger". You have constant ringing in your ears and sometimes major ear pain due to having "congested ears". The fatigue is so deep it's hard to describe just how severe that feeling is. I can sleep 16-18 hours on those days. Your eyes feel like you're going blind quite literally. I see double and then one eye turns "off" and I can't see out of it so I really do go temporarily blind in that eye until the herx is over. I fear that I may someday have my sight taken in that eye. Blindness has been known to happen with Lyme Disease. Scary eh?
On these days I just endure. With my Heavenly Father's help and my Savior's they are THE only reason I haven't given up. I am in constant prayer to survive and I am answered by being held up by Angels quite literally. I have felt them. It's true! I've literally felt my Grandma Mer sitting beside me when I've had to endure a seizure by myself. It is WAY beyond any kind of Hell you can imagine. One day we (people that have Lyme) will get the recognition, compassion, and understanding we deserve. This disease will be recognized as THE most painful, debilitating disease known to mankind. I can't wait for that day. "Cancer is nothing compared to this... to treat as well as for the patients to deal with the symptoms from it. It is THE most complex disease which is why doctors don't want to and won't deal with it." Quote from 2 different doctors that treat both. And yet we don't get the help at all that cancer patients do. Some day I know this will change. Which is why I'm writing this blog. Not to gain sympathy but to give understanding. I feel it's my mission...
If you're reading my blog and you have Lyme Disease I hope I have done it justice in this too short of blog post. If I really tried to tell everything it would be so long I'm afraid people wouldn't read it. Let me know in the comments other ways you Lyme Warriors suffer. For you that don't have it....
BE GRATEFUL!
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