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Just a short one from me today; I haven’t been blogging as much lately as my brain fog symptoms haven’t been good enough to allow me the eloquence with which I like to write, and so rather than submit you all to drivel, I’ve spared you with silence instead. But that was never the plan, so no matter how long symptoms may lead to silence for, I will not remain silent. There are always stories to tell, there is always hope to share and light to spread.

So on that note- what is courage? Some might say it’s doing something adventurous like a bunjee jump or a trek through a snake infested jungle. They might also think strength is lifting heavy weights or pushing a bus or something extreme. But what of lifting your head off the pillow when you are weak and very ill? That’s strength. And what of having the courage to keep going day in, day out, despite a multitude of symptoms that alone would be enough to floor a person and make them give in. That’s courage.

So remember, “Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.” ~Mary Anne Radmacher.

A few weeks ago, I read a story from a fellow blogger that really touched my heart. This lady most certainly lives her life with strength and courage, and even more than that, she has a bright, warm heart, she has optimism, she wants to help and inspire other people, despite all she has to deal with herself. So I asked her if she’d mind me sharing her story here and she kindly agreed.

So I share this story as a reminder to anyone who feels like giving in, like it’s all too much- you are not alone. No matter how bad things seem, there is a will inside of us all that wants us to keep on living, keep on trying, to lift our heads up off the pillow and to say in that quiet, courageous voice: ‘I’ll do my best. I’ll keep on living. I’ll do what it takes’.

So, whatever it takes- remember you’re not alone and remember that you are strong and courageous, simply for living the life that you do.

Laura ~

Here’s Candice’s story- from her blog “Infectiously Optimistic” http://www.infectiousoptimism.blogspot.com/

Yesterday afternoon, as I stood in front of the kitchen counter in my mismatched pajamas, pureeing my daily liquid lunch of black beans and brown rice whilst popping a handful of pills, I paused for a moment. I thought to myself, “How the heck did I get here?”
It’s a very good question that I’m sure many lyme patients ask themselves from time to time. Late stage lyme disease has a funny way of turning your life upside down in such a way that it becomes barely recognizable. I’d even go as far to say that for some of us, it wreaks such havoc on our bodies that we tend to look in the mirror and wonder, “Who is that?”.
Well, in light of Lyme Disease Awareness Month, I’ve been asked to share how exactly it is that I got here. This is quite a challenging feat, because I often wonder it myself. You’d think that the life of a chronically ill person would be dull and monotonous, and while sometimes it is, we’re also on a journey like no other, and we tend to experience things that some people never experience in their entire lifetime. If you’re interested in hearing about just a portion of it, please bare with me while I reveal what it’s like to be a late stage lyme disease patient, and how it is I actually got where I am today.
Chapter One: The Subtle Beginning
I didn’t know it yet, but for me, my journey with Lyme Disease began in the 6th grade. People joked that I should probably consider becoming the next “Bubble Girl”, because I started catching just about any infection that blew my way. It actually became rather disturbing, because I began to pick up some off-the-wall illnesses that your average American teen doesn’t usually get. I can’t tell you how many times I’d been asked “Have you traveled out of the country lately?”. When I’d reply over and over again with “No, I haven’t.”, they’d begin to ask me “Are you sure?”. I almost felt like laughing. “Oh yea, Doc, I totally forgot, I travelled to Japan for some fresh Sushi last Thursday night.”
Then the digestive issues began, and it was all downhill from there. I’ll spare you the gritty details, but basically, my GI system essentially shut down. I went about once a month. Enough said! It began to get harder and harder to eat, which was both confusing and embarrassing as a pre-teen girl. I’d go to the doctor and get xrayed, and the doctor would say “Wow…I don’t usually see this, and if I do, it’s in very elderly patients. There’s no room left for food in there!”. But he didn’t do anything about it, until it was too late.
By High School, all sorts of rumors had begun to fly around about me. My weight fluctuated based on how my digestive system was functioning, as did my appetite. Often times it was hard to get through lunch, and of course, gossipy teenage girls didn’t let that go unnoticed. I was too humiliated to say anything though. I mean, a teenage girl really doesn’t want to stand up on the bleachers and announce that her intestines are broken.
Chapter Two: Doctors Don’t Always Know Best!
I’m not quite sure what happened when I turned 16, but I have a sneaky suspicion that it involved a second tick bite (lord only knows when I got the first one). After returning from camp in the Santa Cruz mountains, I came down with “flu-like” symptoms and the digestive symptoms reached their peak. 4 days later, we went to Hawaii, where things continued to snowball. I remember thinking that my ear drums were going to implode as our plane landed, and I distinctly recall laying in a crumpled ball on the hotel room floor that night, clutching my stomach. It felt like someone had pulled the plug on my internal bathtub of energy, and it was slowly draining out.
Upon arriving home, we went back to the doctor. This is when I became a human guinea pig. They threw just about every digestive related drug (that you now happen to see on those lawsuit commercials) at me. They told me I needed to get more sleep. I needed to “wash my hands” and “drink plenty of water”. I wish life were that easy. They made me think that it was normal to feel like I was walking around with lead in my pockets and bricks in my shoes.
After conventional medicine had continued to fail us, we decided it was time to seek out some help from an alternative practitioner. He was wonderful, but I was an incredibly complicated case. He helped us to uncover that I had a boatload of food allergies. As we began eliminating them, my digestive system began to change a little, but scary things began to take place. My diet became smaller and smaller as my body began rejecting whole categories of foods. In hindsight, we weren’t educated enough on food allergies, so we weren’t sure what to keep and what to cut out. We had no idea what “gluten free” really meant, and I made epic mistakes like thinking that “rye” bread was okay because none of the ingredients said “wheat”. Perfect recipe for intestinal malabsorption. Despite eating mass proportions of what I thought was “safe”, the weight began melting off of me faster than butter in a hot skillet.
Chapter Three: The Hospital Stay From Hell
Before I knew it, I was 17 years old, 5’7, 88 pounds, and I was laying in a hospital bed. I barely remember my 10 day stay in the hospital. I honestly think I was comatose most of the time. I wasn’t aware enough to be scared. My intestines had gone into malabsorption, so no matter how much nutrition they pumped into me, my weight remained alarmingly low. My blood pressure was so low that the nurses would come in frantic in the middle of the night, flip on the lights, and discuss what to do with me. My heart rate tanked as well, and at some point during the stay, I don’t remember it, but I went into atrial fibrillation. I went into a-fib at 17 years old. Since they didn’t know what was going on and didn’t have a clue how to fix it, they blamed it all on the weight loss. The only thing they couldn’t tie in to the weight loss was the fact that my liver enzymes had shot through the roof (up in the 300s!), and even though my charts note that they were concerned my liver would start to give up on me, they chose not to bring it up. Despite my blood pressure being 70/30 (half of what it should be) my heart beating at 40 bpm, and my liver under dire stress, they still put me through the wringer with gastrointestinal tests. All to tell me that “your digestive system isn’t working”. Thanks Sherlock. Food moved through my system 6 times slower than an average person’s would, that means when I sit down to breakfast every morning, yesterday’s breakfast has just left my stomach, and is beginning to digest. Bet you can guess what they did about it though. Nothing.
So, I took matters into my own hands. I started to educate myself about diet. I learned what it really meant to be gluten free, dairy free, and essentially allergen free. Unfortunately, I also had to cut out fats and animal protein, because my broken bowels decided they just couldn’t do it. I’m happy to report though, that I did bring my weight up to about 100 pounds, all by myself. That’s still about 30 pounds underweight, but it was better than 88!
Chapter Four: College, or Something Like It.
So, despite having no energy and a really whacked out diet, I had the bright idea to leave home and go off to college. Everyone said that there wasn’t anything serious wrong with me, so in theory I’d be okay, right? Wrong. It was quite the experience. Because of the issues that were beginning to plague my body, I spent literally all of my time sleeping, studying, and cooking. It was horrible. I met some of the most amazing people I’d ever met in my entire life, but I never got a real chance to be around them. I was far from the typical “college student”. My life was a living nightmare, that I was trying desperately to grin and bare. I had to cook every two hours in the community kitchen, just to keep on weight. I had to fit going to class inbetween my eating schedule, and ontop of it, had to find time to actually do the work. I found myself trying not to cry as I stood at the sink, rubber gloves on my hands, rinsing dishes as I tried to both eat and clean up dinner at the same time. I tried to focus on the book I had laying open next to the sink, but all I could focus on was the sound of everyone laughing down the hall, as they ate pizza and played card games together.
I believe that both life and Lyme are all about lessons. Boy did I learn some in college. I now understand that my priorities were royally messed up. As I focused on maintaining A’s in all my classes, I started getting F’s in health. My bladder started to go on me, so I started to have to sit on the end seat in the giant lecture halls, or else I couldn’t stay. I couldn’t make it across the aisle in time. This meant that I also had to find time to cook, eat, study, get to class 20 minutes EARLY, do the assigned work, and sleep. I was often so exhausted that my whole body burned, from head to toe. I was so tired it was often hard to breathe. My kidneys would send shooting pains through my mid-back when I’d least expect it. I had chest pains as I rushed through each daily task, and often woke up in the middle of the night shaking, in a cold sweat.
My body finally said “enough”. I woke up one morning, and couldn’t move. I was in so much pain, head to toe, that my whole body was locked in one position. For 45 minutes, I was paralyzed. At this point, I was in a single dorm room by myself, on a raised bed. I couldn’t reach my phone so I laid there for a whole 45 minutes until I could manage to move my arm enough to grab it. As I dialed my Mom’s number, I tried to stand up, and that’s when my heart rate skyrocketed, and the room began to spin. As I tried to explain what was happening without sounding scared, I noticed that my abdomen felt funny. While on the phone, I slowly traveled the mirror, and lifted my shirt to check out what was going on. I tried not to have a verbal outburst after seeing what I saw. My ribcage on the left side was pushed out about an inch higher than the right side. Turns out my spleen couldn’t take it anymore, and it blew up like a balloon. At the time, I really had no clue what a spleen was, or where it was even located, until it popped up and said “Hello, I’m your spleen, and I’m really pissed off!”.
You’d think that’d freak me out enough to send me running straight home, but I actually stayed at school like that until the end of the week. I believe it was 3 or 4 days, and things were continuing to get worse, and I could barely stand up. I didn’t tell anyone, but I had missed every class scheduled that week. I finally called my Dad, and he rushed over to take me home. I haven’t been back since.
Upon coming home, I took a trip to the emergency room, where they were absolutely no help, yet again. They told me I probably had a nasty virus and that it had attacked every inch of my body, settling in my spleen. After 1 week of laying in my parent’s bed, unable to walk or barely get to the bathroom, my Mom got me back to the office of the alternative practitioner I’d previously seen. He was rather shocked at the condition of my body, and knew exactly what to test for. This is when I got my first positive blood test. I was diagnosed with Late Stage Lyme Disease.
Chapter Five: An Uphill Battle
I celebrated at first. I thought, “Finally, I know what it is. I can treat it, get better, and move on with my life”. Unfortunately, this has been far from the case. We initially tried an antibiotic protocol, but I only lasted 10 days on it. I came to find out that treatment for Lyme is much like treatment for Cancer. Your entire body becomes toxic. Because of this, I ended up in the ER, with frightening blood pressure and heart rate issues. That’s when I began to have spells where I’d start to black out, and get stuck in-between that phase between consciousness and unconsciousness. On the tenth day, after laying awake for an entire night having seizure-like episodes, and after having had to be practically carried to the car after a doctor’s appointment, I called it quits.
Since then, I’ve tried a multitude of alternative treatments. Some of which have also sent me straight to the hospital, and others that haven’t had much of an effect. Things began to snowball again 1 year after diagnosis, as my immune system began to become increasingly suppressed. In May of 2009 I contracted an 18 day stomach flu. Shortly thereafter, I contracted what the doctors think was either viral meningitis or the swine flu, and my immune system was so confused as to what to do that instead of fighting the virus, it had an allergic reaction to it. With a fever of 103.5, I went into anaphylaxis. My throat and lungs began to close up, I broke out into a rash that covered my entire body from head to toe, and my lips and tongue swelled and blistered. We were in the emergency room every day for 4 days straight, because it just kept getting worse. All they could do though was tell me to keep an epipen with me at all times, and if I stopped breathing to call 911.
Chapter Six: And The Surgeon Said “Oops”
After that, we decided that it may be time to try antibiotics again. I gave a few a shot, and endured hell for 1 whole month, only to develop autonomic seizures, dysautonomia, and chemical sensitivity. After finishing the bottles, I had such bad dysautonomia that I could barely stand up again, and my chemical sensitivity was so bad that I could no longer leave the house. We needed to take some sort of action, and my doctor was really at a loss at what to do, so he decided to see what would happen if he just slammed my body with IV drugs, to try to know out massive loads of infection. He warned me that I’d become alarmingly sicker, but he promised that I’d come out on the other side.
So the doctor set me up to have a portacath surgically placed in my arm (usually they’re in the chest, but I have no fat there, just ribs!), which would run a catheter from my arm to right outside my heart, so we could infuse the antibiotics. Because of the dysautonomia and MCS that I developed, surgery was going to be quite a tricky task. I opted to be awake during the surgery, and I opted out of the morphine. This meant that I only had local anasthesia and a small dose of ativan to keep me calm while they cut me open and threaded a tube to my heart. This is something that I probably won’t be signing up for twice.
The surgery seemed to go fine, until the surgeon left the room and it was time to get me off of the operating table and onto a bed to be transfered to recovery. The minute they tried to move me though, all hell broke loose. My heart started beating irregularly and my heart rate shot up to 145, and any time they tried to sit me up I’d have pains and unusual sensations surge through my chest. They sort of scooted me onto the bed anyway though, and transfered me to recovery. I laid there for two hours, while nothing improved. They tried to tell me that it was “probably normal”, but I insisted that though I feel like crap on a daily basis, it’s usually not THIS bad. They decided to xray me just in case then, and upon viewing the xray, the surgeon said “Oh my God, how’d that happen?”. There’s one word that you never want to hear while in surgery. It’s “Oops”. There’s also three words you probably don’t want to hear either. “Oh My God”.
It turned out that instead of the surgeon threading the catheter TO my heart so it could sit comfortably outside of it, he accidentally lodged it deep inside of my heart, where it certainly was not meant to be. So, I had emergency surgery (awake) to have the port removed, and at that point, I vowed to never have elective surgery again. I now have scars on my arm to remind me why.
Chapter Seven: Just The Beginning.
That brings me to where I am today. I’m treating with a new practitioner, who is using a combination of alternative and conventional therapies to get me well. It’s going to be a long, trying road, but I know he can get me there. I still can’t leave my house yet (aside from a trip to the doctor), but this wonderful practitioner has gotten me to the point where it’s at least comfortable to sit in a chair again. I no longer feel like I’m dying. I know this doesn’t sound like a lot, but for me, this is huge. I have the upmost faith that I can get through this. It’s just going to take a whole lot of strength, patience, and optimism. This is truly a humbling experience. At times it’s hard to see the light at the end of the tunnel, and to focus on what’s important, but at the end of the day I still go to sleep and thank God for every day that he’s given me, and for every breath that I take, even if it’s a labored one. The biggest lesson that I’ve learned is that it’s really the little things in life that are the most important, and that if you focus on those things, you can find the positive aspects of your life no matter what the circumstances are. I may not be able to leave my house, I may have to eat the same liquidy foods everyday, and I may be stuck laying on the couch, I may have a list of 57 symptoms, but I’m still optimistic. And one day, when I’m back out in the world, truly living again, nothing is going to be able to bring me down.
So, on that note, I think I’ll end here. Please forgive me for how long this post is, and thank you so much for baring with me through it. But truth be told, it’s really just a snippet of what I’ve been through. That’s why I’d like to take this opportunity to blog some of what my daily life looks like, but to also share with you those little things that keep me going. By doing so, if I just reach one person, or educate one person, or make just one person smile, then my mission is accomplished. Take care everyone.

“But there is suffering in life, and there are defeats. No one can avoid them. But it’s better to lose some of the battles in the struggles for your dreams than to be defeated without ever knowing what you’re fighting for.”
Paulo Coelho

I keep telling myself that all of this suffering has to bring upon some progress to take my life back from Dysautonomia. I read somewhere that without any struggles, there can never be any progress and I second that;) As long as I try my hardest everyday and struggle my way through the hardships of living with dysautonomia, I’m making progress. It maybe baby steps to reclaim my life, but they are steps in the forward direction!
I guess what I’m trying to say is this; although the struggles can just beat you down sometimes physically and mentally, maybe try to remember that because you’re experiencing these struggles, you’re still in the game!!!!!
Never quit! Together we can make it through another day:)

“Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength.”
I believe that this quote has a lot of meaning for ALL who struggle with dysautonomia. We must persevere all though at the moment there are not many treatment options for us and the future may seem bleak.
Every single day medicine is taking huge strides in finding new information and medications. I know that that sounds easier said than done, but the HOPE for a better tomorrow is worth the daily fight. I don’t know, but what I do know is that this has helped me and hopefully it can help someone else!!
🙂

This blog exists for its users to submit articles, pictures and writings related to dysautonomia and what it’s like to live with. The sentiment behind it is that we have all suffered in silence, now- together- we have a voice.

To me, it seems tragic that there exists an illness so debilitating that it can attack the vital workings of the body and yet it’s not even been heard of by many people- including many medical professionals.

Whatever we, the sufferers can do to get the word out so that people don’t have to go on suffering the ignorance out there about dysautonomia, we will aim to do. This blog is one of the ways of doing so.

We are DARING to speak out about what it can be like to actually live with dysautonomia and have to put up with all the ignorance and misunderstanding about it. Dysautonomia Awareness is Rarely Experienced outside of the circle of people who are suffering with it. If we can work together to get the word out, to get the medical professionals to take notice, to help our friends and loved ones to understand what it’s like for us, then Dysautonomia Awareness can be Really Experienced.

That is what DARE is all about.

So, scroll down and read our blog posts, or click on the tabs along the top to take you to pages containing further information.  Link to us, and spread the word about this site to raise Dysautonomia Awareness!

Thanks,

The DARE team ~

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The first blog posted or use the search feature to find articles of interest. Enjoy your stay and remember- spread the word! 🙂

Laura Posting- An absolutely BRILLIANT photo taken by a fellow potsy friend, Angela Perry. Posted here with her permission with, to quote “AWARENESS AWARENESS AWARENESS!” 🙂

Oh, making this post brought a smile to my sad face today. When the picture was uploading, wordpress said ‘crunching’. It made me think of wordpress crunching up all those pills, LOL!

A small smile on a sad day is a good thing. 🙂

Liz Posting- First let me thank Laura for creating this great blog where we can all vent & help one another.
Thanks Laura!! 🙂

This logo was created for one purpose. To grab attention and to say screw you to Dysautonomia and the medical community. Actually I guess that was three purposes but you know what I mean. If you are someone afflicted by this condition or who knows someone with it. I think I can speak on behalf of all of us where we have our days where we just want to say FU! Dysautonomia & Ignorant Doctors. Please help to spread the finger for awareness. There is also a Dysautonomia Awareness Petition that is now at over 1,500 signatures!! Please Sign, get your parents to sign, your next door neighbor, or anyone who has a IP address. Here is the link below