Monday, September 28, 2009

Einstein Quote

Nothing will benefit human health and increase chances for survival of life on Earth as much as the evolution to a vegetarian diet. ~Albert Einstein

"Anything's Possible"

This last weekend was a quiet one for me, aside from Saturday, when I went to my favorite park and climbed my mountain. Although feeling a bit under the weather, we packed up the dog and our water bottles and headed south. Once we got there, our usual quiet park was now a bustling little recreation area with dozens of families celebrating birthdays and the ushering in of fall. I'm normally quite shy around crowds of people, especially when I am about to struggle to climb the bridge that crosses the river that goes through the park, and this day was the kind of day when I would usually just turn right around and head back home, or go somewhere much more quiet to get my exercise, but instead I pushed forward and faced my fear. I trudged through the crowds of people and headed straight to my Everest.

On the way there I met several people along the way who were also out getting their exercise on the trail. One gentleman in particular was walking with his son, coming down the North side of the bridge. When he saw me heading toward it in my wheelchair, he said "it's going to be tough!", (as if I had no idea of that fact), and his son very quickly and somewhat angrily said to him, "anything's possible dad!" Now first of all, this man had no idea how many times I have climbed that bridge in my chair, I could probably do it faster than he could run up it, and secondly, he had even less of an idea that I was about to climb up it with a crutch and the railing and severly weak and disabled legs!

The beautiful part of this story was his son. That little boy restored my faith in humanity with one phrase. He was about 9 years old, and he was telling his father that anything is possible! It just doesn't get much better than that.

I decided to wait to climb the bridge until I was on my return trip simply because there were just too many people, which would have meant I would have to wait for them to pass, and I like to climb it non stop until I get to the top. So, we rode through the entire trail (2 miles) and then swung back around and I climbed my bridge with more vigor than ever.

That man's son was right, anything's possible! I wish I could find that little optimist and give him a big hug and a high five and tell him he's absolutely right!

Saturday, September 26, 2009

I think the dog is more tired than me....NOT! Climbed the bridge today

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Wednesday, September 23, 2009

Amazing spirits in the oddest places

I met someone yesterday who really captivated me. It's not often that someone captures my attention this way. His spirit is... amazing.

In a world filled with negativity, anger, depression, fatigue, and sloth, this person was, to say the least, refreshing. This is a person who deals with people all day, every day, and sometimes angry people, yet he remains positive, cheerful, kind and funny.

My hat is off to you Sean from the Verizon store, you made me smile and brightened my day, and I thank you so much for that.
Someone with such light is such a rare gift.

God's beauty always captivates me

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Good Morning

Up at 6:00 AM today, I started my day off well. I am a morning person, I usually love to get up as early as I can drag myself out of bed, stumble to the coffee pot to get it going, take a hot shower, and then watch the sun come up while sipping hot coffee. Mornings are the quietest time of the day, and I love to soak it all in. There is something about knowing I have the whole day ahead of me that gives me a sense of peace and relaxes me.

I am contemplating adding a morning ride into my routine. Traffic is slowest first thing in the morning, and it certainly is beautiful outside around then. The humidity here in FL is highest first thing in the morning, but at least it's not quite so hot. If I get the ride over with, then the rest of the day can be focused on work and walking. My only delimma is I love to ride in the sun. I know it's bad for me, blah, blah, but I am a sun worshiper. Put me in the direct sun and I'm golden (quite literally, ha ha). I'm not one of these people who slathers on baby oil and goes out and purposely roasts, and my facial moisturizer has sunscreen, but I love being outside on a sunny day soaking in the Vitamin D and enjoying all the sun's many benefits. Like my favorite nurse in ICU used to tell me when he would come to the nursing home to visit and get me out of bed and take me outside, "Fresh air and sunshine kills bugs".

Perhaps I would benefit from a morning and an afternoon ride, if time permits. There's no reason why that wouldn't be great for me. Heck, come Christmas time I could quite possibly be in the best cardiovascular shape of my life if I'm riding 6 miles a day!

I know the key here is to not just talk about it, or in my case blog about it, and just do it, but it helps me to get these things down on paper so I can weigh the pros and cons and figure out how to implement them into my day without creating chaos.

I suppose tomorrow will be the test. I may as well skip the shower first thing, go for the ride, come back and shower and have my coffee. I would have started this morning, but Wednesdays are garbage day and I don't want to compete with the garbage trucks for space on the road.

So, tomorrow it is. I guess I'll load up the mp3 with some classical music to get my brain set for the day!
Got a new phone testing it out. So far its really cool!

Monday, September 21, 2009

Disability and Dating

One of the biggest issues I have had over the years of being in a wheelchair is dating. Just as nobody would knowingly buy a broken car, it seems like nobody wants to date someone who is broken either.
I have had relationships, don't get me wrong, but they just went nowhere. My most notable recent relationship was with a man with a really good heart, and despite his faults he loved me for ME, never really saw the chair, he just had a big problem with his mouth. I don't know if it was his own disability or what, but the man could not keep his mouth shut. I'm not talking about just normal every day talking, because he certainly did a LOT of that, but I mean he had no filter, no gate, no reasoning... no... class. He would say whatever he wanted to say, when he wanted to say it, and had no regard for who was around him, in fact having an audience fueled him to say inappropriate things, it seemed. A sort of "shock and awe" kind of person.
I stayed with him a lot longer than I should have, simply because I felt like who was I to judge. I am not perfect, and never claimed to be, that's obvious, but I at least try to have some class and respect for others. It's just common courtesy. But, I figured he was with me and never made an issue of my disability (except for the time he told me during my move from my house to his that if I couldn't personally carry something I shouldn't own it - just a shining example of that mouth!), so why should I fault him for his. After all, he was a hard worker, could be so gentle and kind it would bring a tear to my eye, he loved my daughter and treated her good and with respect, and he really did love me. His biggest problem was that MOUTH!
Finally, I had to let him go. His outbursts and inane ramblings became too much for me to handle. It's one thing to have a mouth like that around me, I choose to be with you, but when it starts to spill over to happening in front of my daughter, or around my family, then it's time to cut you loose.
So, I've been single again for a long time. It doesn't help that I work from home and live in the country, 15 miles from a very small town. My social life consists of trips to the grocery store and Lowe's. I meet people along the way of course, but they pass me by with a nod and that "what a shame" look I've gotten so used to seeing.
Nowadays, I have begun to walk more, but I am still insecure, so I only walk in the privacy of my own home. I walk funny, have a really hard time doing it, have to concentrate, and feel like the whole world is staring. Plus, I walk really, really slow and with a walker. It pains me to even have to go outside and walk from my house to the garage, which is about 80 steps, because my neighbors see me and I get nervous and embarrassed. Now I am concerned about what happens when I get even stronger and need to just walk all the time and ditch the chair. I'm still going to need a walker or crutches, and I'm still going to walk funny for a while. Will I be able to overcome my insecurities and fears? If I have been dealing with stares and pitied looks for this long, imagine what kind of looks I will get when I am up and walking but struggling to do so. I'm like a circus freak, and nobody wants to date a circus freak.

Saturday, September 19, 2009


I encourage everyone who encounters my blog to share their stories.

This gentleman shared his story with me via an email, and with his permission, I am sharing it with all of you:


I was diagnosed with CIDP (Chronic Immune Demylenating Polyneuropathy) in 1999 and I pitied myself for about a year. Then I got on a bicycle and never looked back. Even though the doctors say I will never completely recover, today it is as though it never happened. I am a Spinning instructor and ride as much as possible.

My wife and I knew an elderly lady who contracted GBS at age 78. She was bedridden and paralyzed for almost a year, but she recovered completely and led an active life until she passed at age 89 from cancer. Except for a slight limp, you would never know she had it.

The bicycle worked for me and I hope it can work for you.

Good luck with your journey.


This story brought me to tears. Tears that come from knowing I am not alone, that others have fought and won, and that I can fight and win too!

It brings me great joy and hope to hear other's stories, so please feel free to share. Email me, post a comment, sign my guestbook, or tweet me!

However you choose to get in touch, just reach out and do it!

Horseback Riding

When I was 13 years old, my step-father bought me a horse. She was a roan colored Appaloosa named Sunny, and she was almost 20 years old, but she was in excellent health and could run like the wind.

I thought of her today while looking through photos on someone's myspace and saw their horses. It made me want to go horseback riding again, just another thing to add to the list!

Every day I find new things that motivate and inspire me to try harder. It would seem that the things I want to do most and have been missing out on would constantly be going through my mind, but I locked all of those things away in a little box for many years and threw away the key. Only recently have I been allowing myself to dream about them again, because only recently have I turned over a new leaf and said to myself "you can do this, just get off your ass and try!"

I will ride a horse again, and although Sunny is long since passed, her spirit will ride with me.

Thursday, September 17, 2009

Sources for Motivation

I find my motivation and inspiration in all different places, but lately it has been in quotes. Quotes that I find in forums, blogs, tweets, and more.

"Patience and perseverance have a magical effect before which difficulties disappear and obstacles vanish."

~ John Quincy Adams

It's amazing to me how someone's words can have such an impact on how I feel. I never thought of myself as someone who drew from other people's words, especially since anyone can say anything, even if they don't mean it. Words are just text on paper, or on a screen, but they have such a massive impact when arranged a certain way, it almost seems unreal.

When I was living in a nursing home, I would have my bouts of depression and lonliness, feeling like the world didn't care and I would never be happy again, and I found my solace in a little book called, "Don't Sweat the Small Stuff, and It's All Small Stuff", by Richard Carlson. I would read from this book and breathe deeply, realizing that this was just a tiny blip in my life and that I was strong and could handle anything. I would then write in my journal, and presto- chango I felt a thousand times better.

We all draw our strength from unique places. I find writing in my blog and reading other's stories and quotes to be extremely motivating.

OTC and prescription medications

I have recently come across some great forums for motivation and inspriation, and in one of those forums I found a thread about Ambien and it's awful side effects. Someone mentioned an elderly man who froze to death because of sleep walking while taking this drug. This got me thinking about the time when I was on several different prescription drugs and how awful they made me feel, when their sole purpose was to make me better... it doesn't add up.

Understandably, when I was in ICU, the medical staff put me on several different medications to aid with anxiety and depression. I mean, how can someone not be depressed and all together freaking out in my situation? It's certainly not easy being paralyzed from the neck down when just a few days ago you were fine! There was something for my depression, several things for pain, something for my anxiety, something to help me sleep, a sedative to calm me down... all together I was on seven different class 1 narcotic prescription drugs. I was on so many drugs that when I got out of the hospital and went in search of a new primary care physician, one of them (whose office I stormed out of) said to me "I just want you to know I don't hand these out like candy". Needless to say I never went back to her. Did she think I really WANTED to be on all this garbage?

My trips to the pharmacy for refills were amusing. The pharmacist would look at me with seven shades of wonder and awe. I simply hated my life and wanted to be off of everything I was on, including the pain meds which I couldn't function without.

All of these supposed medications were meant to make me feel better, when all they really did was make me want to slit my wrists. In fact, I tried to kill myself, unsuccessfully, a couple of times. I was in this whirlwind of emotions, and none of them good. I was fresh out of the hospital after being there for six months, had my 2 year old daughter to care for and no idea how to do that from a wheelchair, and I just wanted it all to be over with. I was extremely skinny, undernourished.. and every time I tried to eat I would have a major panic attack, living alone with a toddler, and every day was a new experience, and not necessarily a good one. I remember one day my daughter fell in the bathtub and cut her chin. My chair did not fit through the bathroom door and I was unable to get to her, and my first thought was that if I wasn't around someone else would have to take care of her and at least they would be better equipped.

I eventually found my rhythm and was able to adapt and cope on a somewhat normal level, but I was still not emotionally fit. I finally found myself a great doctor who could see my pain plain as day, and we worked together to get me off of the drugs that were causing all of it. After three months of slowly eliminating everything, including the pain medication, I was back to a somewhat normal level of emotional stability and felt like myself again. I was also much more able to cope with my situation with a clear and healthy mind.

After that experience I am hesitant to take anything that doesn't occur naturally, and even some of those things can be quite harmful to our bodies and minds. I am glad I was strong enough to pull through it all and stick around for my daughter, because in the end she was better off with her mommy, but it was a close one for both of us at one point, and all because of drugs. Prescription drugs, but drugs nonetheless.

Nowadays my anti-depressants are in the form of healthy organic foods, lots of exercise, lots of water, writing in my blog, and days spent enjoying the company of my wonderful daughter.

Wednesday, September 16, 2009

"And on the seventh day, He rested."

Resting: Something I am not real familiar with, I am usually go, go, go. Since I've been working a lot harder at walking again and really taxing my body, I have been doing a lot more reading, and what I have read so far, and pretty much everywhere, is that I need to rest. I always knew the body needed rest, that's why we sleep at night, but apparently I need actual rest days... whole days in which I allow my body to heal and repair and build.

These past two days that is exactly what I did. I didn't do a whole lot else besides rest, and now today I am ready to get back at it. My legs are tight and sore and have that spastic feel to them, but I use this to my advantage as it helps me in my therapy.  The spasticity is a false sense of added strength for a little while, like a new rubber band that is still tight and hard to stretch, it's strong.  They hurt and burn and feel like an alien part of my body instead of a natural part of it, but that's all part of the healing process.

So on my agenda for today is to ride my exercise bike and walk.  I should probably try for at least 500 steps.  I guess I will see how I feel when I actually stand on these sticks that feel like hot pokers attached to my hips.

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Saturday, September 12, 2009

I wish...

There are so many things I want to do, so much I have missed out on over the years. I miss the feel of sand under my feet, and the ability to swim in the ocean. Just being able to climb a set of stairs is such a distant memory. To walk through the morning dew on the grass, or go to the park and go on the hiking trails. My life has been restricted by these four wheels I ride on and I'm quite frankly sick and tired of it.

Before I go anywhere I have to plan and make sure it's accessible. Are there bathrooms accessible to me? Will I be able to see passed the butts in my face? Will it take me a year to get through the people who don't see me until I touch them and say "excuse me"? These examples just barely scratch the surface of what I must think about and go through just to go anywhere.

It will be nice to not have to think so much. If I want to go somewhere, to just be able to pack up and go. If I'm buying a car, to not have to think about if there is room enough for my chair. My life has revolved around this wheelchair for much too long.

I want to go to the Grand Canyon and hike. I want to take a kayak to a remote island and get out and have some alone time. I want to ride a bike until my legs feel like they will fall off!

All I can do is keep trying and keep praying. I will get there, I just know I will.

Friday, September 11, 2009

"It's easy as riding a bike..."

"Be faithful in small things because it is in them that your strength lies." - Mother Teresa

Riding bike used to be one of my favorite exercises and pasttimes.  When I lived on Clearwater beach many years ago, a pedal bike was my only form of transportation, and I loved it.  One doesn't need a car if you never leave the beach. 

Since I became ill, I have not had the privilige of riding a bike, in any form.  Years ago, my father bought me a recumbant exercise bike in hopes that I would use it to make my legs strong again.  I used it, but I was unable to push it with my legs for longer than about 10 seconds, so I would put my hands on my knees and push with my arms, and that is how I would get my cardiovascular exercise, and as close as I came to actually riding a bike.

I still have that recumbant exercise bike, and yesterday I got on it and rode with just my legs for five minutes.  Yup, FIVE minutes using just my legs.  It wasn't easy, but I did it.  I did it and it felt great.  The last minute felt to me like what the last mile of a marathon must feel like to a runner, but I did it!

So, today I couldn't wait to get back on it, and I did, and rode for five minutes and thirty seconds.  This time it was a little bit easier than before, and I was able to concentrate more and get my legs to move properly, and a little faster.  I rode my five minutes, got off and did some housework, and was so addicted had to get back on about an hour later.  I got back on, closed my eyes, and rode.  I rode for six minutes and 30 seconds.  I closed my eyes at one point and for a second I could remember what it felt like to ride a real bike.  And then I pictured myself running, and tears came uncontrollably rolling from my eyes.

Wednesday, September 9, 2009

Guillain-Barre Syndrome Awareness

Back in 1997 when I was originally afflicted with this terrible disease, so much less was known about it that I suffered much more than I would had I been afflicted today.  Doctors and hospitals are much more aware and ready to jump on this disease.  The hospital I went to when I became ill has made it standard to ask patients if they, or any members of their family, have ever had GBS.  Unfortunately, it is becoming much more common and more and more people are suffering this terrible disease.

The more it is talked about, the fresher it is on people's minds, so if someone starts to feel even the smallest of symptoms they can get help immediately and recover very fast.  My uncle was afflicted a few years ago, and thanks to my knowledge and my family's knowlege because of what I had gone through, he was able to get proper treatment and recovered rather quickly. 

It has taken me a very long time to recover, and although I do feel that is partly my fault for giving up for a while, I also KNOW I could have been much better much faster had I received proper diagnosis and treatment in a timely manner.  It took them much too long to decide what was wrong with me, and therefore much too long to give me what I needed to begin recovery.  This process is usually very quick, both in destruction and recovery, but my legs remained completely paralyzed for four months.  That is much too long, and very uncommon with this disease when proper treatment is given.

As with any disease it is very important to remain aware.  Don't brush something off and think you'll get better, go to the hospital and make sure it's nothing, because it could just be something.

Saturday, September 5, 2009

Today - Saturday, September 5, 2009

Today I awoke very sore from yesterday.  Yesterday I climbed my bridge at my favorite park.  This bridge crosses the creek that runs through the expanse of the park.  Heading South the bridge has three wooden ramps which lead to an arch at the very top of the bridge.  Heading North in the opposite direction there are four wooden ramps.  The first time I attempted to climb this bridge, using just the hand rail and a crutch in my other hand, I was barely able to climb the first ramp before I was completely out of gas and had to sit down.  I didn't feel I had it in me to attempt any more that day.  The second time I climbed it I was able to do one more ramp, for a total of two, and the third time three ramps total. Finally, about two weeks later, I returned to my personal Mount Everest and I was able to climb to the top on both sides, first climbing the side that heads south, and then using my chair to wheel the trail, subsequently returning to climb the side that heads north, all the way to the top, for a total of seven ramps. 

Now, yesterday, about two weeks since the last time I climbed my seven ramps, I returned yet again to my Mount Everest and climbed the whole bridge again, this time much more quickly and with less effort than any other time before.  This just goes to show what sheer determination will get you.

Today I washed my truck.  Usually I will wash it in my wheelchair, standing only to hit the high points, but using the chair the entire time.  Today I washed it using my walker.  I have a walker with a little seat on it so I can sit when I get tired, so I would wash a large section, sit for a second to rinse it, and then continue on washing the rest.  I washed the whole truck this way only using the chair for the real low points that are too hard to bend down to reach.

I am making progress by leaps and bounds.  Something I NEVER thought was possible.  It's so wonderful it doesn't even seem real.

Friday, September 4, 2009

This is my mountain

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My Mountain

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This is the mountain I climb.  It is a boardwalk bridge at a local park and it's quite expansive.  When I first started I could barely make it up one ramp, now I climb both sides, for a total of eight ramps, sometimes nine!

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Thursday, September 3, 2009

Progress Update: September 3, 2009

I think my turn around point, the point where I finally decided to start moving more, was when I moved into my dad's house. There are no ramps, and the only way in is to climb steps. I used to just scoot up on my rear to get inside, but when I moved in I started climbing them. At first I had to hold on tight with one hand and pick up my right foot with the other to place it on the next step, and then it took all I had in both arms and legs to boost myself up to the next step. That process has changed so dramatically I can hardly believe it myself. I started using the muscles in the right leg as much as I could, and now today I am able to get my right leg up to the next step without using my hand to put it there, and my balance and strength has improved ten fold. Just the act of walking the steps has made me a lot stronger.

Climbing the steps then gave me the confidence to start walking more. I could feel the strength in my right leg increasing so I figured some more walking would be beneficial. When I first started with more walking, I was walking 80 steps at a time to and from my garage, and usually only once or twice a day, three or four times a week. Now, I am walking 300 or more steps per day, sometimes even 1,000 in one day, and I just can't believe how far I've come. Something I thought would never happen and was hopeless, is now within my reach. I actually feel as though I can do this, I can pull this off. I will walk again someday on my own power. I will. Those words make me cry.

As I sit in my bed typing this, my walker is at my bedside. This is the first night I am going to attempt going without my wheelchair. I usally get up at least twice in the night to use the bathroom, so this means I will have to walk. I'm not sure how this will work out when I'm half asleep, but I am about to find out. Wish me luck.

Guillain-Barre Syndrome

I can still remember when I got sick like it was yesterday. The almost 12 years since are kind of a blur, but those few days leading up to my illness, and the months spent in the hospital after, are as crisp and clear as if it were happening again right now. You never forget something like that, no matter how hard you try to block it out.

I had decided to clean up my act. I had been working as an exotic dancer, but I had a child and a boyfriend and I wanted to be more "normal" and focus on my family. I still had to work, and there remained the fact that I had dropped out of high school, and although I had gotten my G.E.D., I still had no formal education to speak of, so I decided to become a cocktail waitress in the bar I where I was working. The transition was easy, I had waitressed and bartended before, and I was certainly strong enough to do the work. In fact, I was in the best shape of my life. Years of dancing in 6" heels and swinging around poles had sculpted me into exactly what I wanted to be, and then one day it all came to a halt... literally.

I was working one night and suddenly realized I was very weak. This was unlike me. I had been drinking water by the bottle-full and working out and eating right, so there really was no reason for me to feel so tired and weak. There had to be something wrong, but I kept telling myself it was the flu or a fluke and I would be better soon. More and more symptoms kept occurring until finally I had to sit down to rest and when I tried to get back up it was very hard to do. For someone as in shape as I was, this was extremely odd. I went home that night very worried that something was seriously wrong, but since I didn't get home until around 3am, I didn't bother waking anyone to voice my concerns. A few hours later after attempting to sleep with a full bladder, I got up to use the bathroom and could not go. My bladder was full, there was no doubt about that, but nothing was happening and no matter what I did, I couldn't go. Finally, that morning very early, I went to the ER. By the time I got to the ER I was in so much pain I was buckled over and I could hardly walk. This was a busy day for the ER, and I was forced to sit in the waiting room in a plastic chair, which felt to me like it was covered in nails, for hours. Finally there was an open room, but with no bed, so I had to sit in the chair even longer until a bed was brought in and they were finally able to lay me down and empty my bladder for me. The doctor who examined me was very impatient, didn't listen to anything I was saying, and rushed me in and out as quickly as he could. He told me I had Herpes and sent me home with pain meds and meds for the Herpes that I found out the hard way I didn't have.

By the time I got home I was so sick I was vomiting and passing out at regular intervals. This was Christmas Eve. I was supposed to go shopping with my boyfriend, but was too weak and sick so I begged him to let me rest. He dropped me off at our condo and I slept the entire time he was gone. When he came back to pick me up I tried to stand up and collapsed to the floor. My legs had simply given out. I was able to get back up and very painfully walk to the car, stopping along the way to vomit some more. By the time we got to his parents' house I headed straight for bed and didn't come back out until the ambulance came to get me on the morning of the 26th of December. I had refused to let anyone call an ambulance prior to that as I didn't want to ruin anyone's Christmas.

My memories of the first couple of weeks are very sporatic and limited. I remember there was a lot of pain. A lot. The kind of pain not a whole lot of people will feel in their lifetime, and thank God for that. I've never felt so much pain, not before (and I've given birth - naturally and without drugs), or since. I wouldn't wish this kind of pain on my worst enemy, and there are some people in this world I would like to see suffer, but not even like this.

At the time I was completely unaware of what was happening to me, but now I understand that my body was attacking itself. My own immune system was destroying the cells that make up the tissues that protect the peripheral nerves along my spinal chord... and nobody knew, or knows, why. This alien disease was killing me. Destroying my abilities inch by inch, starting from my feet. By the time I had gotten to the hospital I was unable to move my legs, and within a day it had moved to my diaphram and made me unable to breathe on my own. After that it reached my brain and put me in a comatose state. I was in this state for what I've been told was about 3 days until they finally gave me the treatments I needed to bring me back.

Little by little my feeling and movement returned, and as it did I had to learn things all over again. I was doing child puzzle games to try to regain my dexterity, and at one point I tried to open a soda can and was unable. I couldn't lift my thumb. I couldn't brush my own hair or teeth. It was hell.

I was in the hospital for a total of five months. During that time things slowly returned to normal. I was able to use my arms much more normally, although they were still very weak. But, for four months, my legs remained paralyzed. I could not feel them or move them. I was stuck in a nursing home because I still needed 24/7 care. When my legs finally started to move again, it was the happiest day of my life. I literally screamed when I saw my right leg twitch one morning when I tried to move it. The nurses thought something bad had happened and came running, only to find me in my bed crying with a huge smile on my face and yelling "they work, they finally work!" After months of pain and suffering, it all washed away the day my leg simply twitched when I tried to move it.

When I was released from the hospital May 28, 1998, I was determined I was going to get better. Guillain-Barre Syndrome was not going to win. I fought and fought and fought what seemed like a losing battle and over the course of time I slowly started to give up. I stopped trying and started giving in to the fact that this might be my fate. I might spend the rest of my life in a wheelchair. I turned to heavy drinking, and then turned to abusing drugs. I didn't eat right, stopped exercising, and sunk into a pit of hell so deep it was hard to see the light.
Until finally one day that all changed.  I woke up and told myself I wasn't going to pity myself any longer.  I wasn't going to sit still and take it, I was going to fight.  And this is the story of my fight!

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Update: Week of July 19-25, 2009

I know it has been a while since I have updated my blogs about my training progress, but this does not mean I have not been training. In fact, I have been so busy training, that this is the reason for my lapse in updates in the blog.

Here are just a few of the newest and coolest accomplishments; I am noticing better balance and more strength all around, my left foot (the weakest link) drags much less than ever, I am able to walk more and stand longer without feeling an overwhelming urge to sit down -- which means my cardio and breathing are improving and acclamating to standing vs. sitting, and I have integrated walking up hills or bridges into my routine to add that extra gravitational element and force my hip flexors to work harder.

I have also gotten back into my previous exercise routine of wheeling in my chair for cardiovascular health. I am back up to around 2 miles on average, and 4 miles on the days when I take a break from walking. I do this 4-5 days per week. The cardiovascular health is a must when attempting all the walking and climbing I've been doing. My heart is so used to pumping blood through a sitting body, versus a standing one, that it is absolutely imperative that it remains super strong. This allows it to adjust much more easily to pumping against gravity once again. My biggest issue with walking, aside from the overall weakness of course, has been endurance. After standing for just a short while, I would find myself extremely out of breath and fatigued as if I had just run a marathon. This has been improving as I get back into shape, but it's just another factor that doesn't improve overnight.

I started gradually introducing more walking, and more exercises geared toward walking, on or about May 8, 2009 when I posted my very first blog to Over the course of these last twelve weeks I have lost weight, gained endurance, and increased strength in my legs and arms. I have experienced peaks and valleys just like anyone starting out all over again for the first time in years, but I continue on, pushing myself some days to the brink, and other days allowing myself some much needed down-time. I am obviously not just magically going to jump up and run around the block, and it's most important that I remember that and don't let the tough days get me down. Proper thyroid function has been key in all of this as I suffer from Hypothyroid. This condition is what caused my weight gain and extreme fatigue, which then made my therapy and progress much more difficult. I am back on my meds and nothing is going to stop me now!

Second Week Progress: May 10-16, 2009

I took a total of 700 steps this week. I wanted to take 1,000, but my body just seemed to need more rest. Afterall, I did just start this program 2 weeks ago. As one of my cousins put it, "that's still 700 more steps than you were taking last month, right?" And yes, she is absolutely right. I also started using a different tool; my forearm crutches. These allow me to walk further without such intense fatigue in my arms, but also force me to use more muscles in my legs and lower body since it is much harder to balance. I even got so brave as to go barefoot without my left foot brace a few times. I usually wear this brace on my left foot, especially if wearing shoes, because I have a bit of foot drop for one, and for two, that foot is much more weak than the right (like when my arms came back, my left arm was much stronger at first even though I am right-handed) so I cannot always pick it up and it will drag and trip me. All in all I would say it was a good week even with a few tiny hiccups.

I had set a goal in my head for 1,000 steps, I think I even mentioned it somewhere -- maybe Facebook or Myspace. After three solid days of no walking, I was coming down to the wire of getting in 920 more steps for the week, but my body was just so tired and sore that it brought down my motivation level. This, in turn, brings down my spirits a bit, and then I overeat.

It's a difficult thing trying to achieve such a big goal. I mean, honestly, all I really want for right this moment is to lose the weight. This will allow me to move around much easier, and then the rehab can really take flight. The fact is, the rehab will aid in losing the weight! So this is where that term "getting in shape" comes in. I must do both and I cannot have one without the other.

My biggest problem is comfort food, especially when I'm feeling pain. I have been told by many doctors, and even some dentists, that we go for sugar and caffeine when we are in pain because caffeine deadens the nerve receptors and sugar makes us feel good. I could be the poster child for that fact. The first thing I go for when I'm feeling low is anything with sugar in it, and even at midnight if I'm achey and sore I will crave a big cup of hot coffee. Last night, for instance, I was very tired from taking my step-sister to the airport at 5am, which in turn made me a little depressed feeling (I get down when I am tired) which made me have not one, but two big bowls of fruit loops. I had done great up until that point. Even though I stayed under 2,000 calories for the day, I still felt guilty and ashamed. Shame on me. Not shame on me for eating the cereal, but shame on me for feeling guilty and ashamed. I didn't mess up that bad, but when I am trying to achieve a goal I feel that if I deviate even the tiniest bit I've been bad, very bad. This way of thinking is wrong. I am doing well and I have to remember that so I don't sabotage my progress thus far.

I have learned that the major key in all of this is never give up. I have always known that, but when I get down on myself and depressed I forget. When it just starts to feel like it's too much, anyone can start to feel like everything they are doing is for nothing. I try my hardest to stay strong, and when I feel like I'm slipping, I force myself to get up and walk even if it's just for a few steps. That brings up my spirits and then I go for more, and more, and even more, until I have done 100 steps or so and now I feel great! Now not only did I do something good, but all those wonderful and natural feel good chemicals have been released in my brain (thank God for endorphins or none of us would do a damn thing) and I start to remember what accomplishment feels like. Even if I take a whole day and do nothing, and eat the wrong things, I try to remember that tomorrow is a new day and I can get back on track once again. I will get there, it's just going to take time and a lot of hard work and effort. I'm not afraid of hard work or effort, I'm afraid of failing, but I can't let fear stand in my way. Afterall, a life lived in fear is a life half lived.

First Week Progress: May 3-9, 2009

Today is the fifth day of this week that I walked my 80 steps. So far only once today, but later on it will be twice for a total of 160 steps today. That's a grand total of 800 steps this week! Considering just the week before I was maybe taking 20 steps in an entire week, I'd say that's quite the difference. Now the real question is, is anything happening?

I have not clarified this before, so I will do so now. I can feel and move my entire body. Certain areas better than others, like my arms for instance, however, the fact remains that I can feel and move my legs. They don't exactly feel the same as before, the sensation is rather dull and nondistinctive (and often I feel like bugs are crawling all over my skin), but the feeling is there and I praise God for that. So this brings me to my progress thus far.

I am definitely feeling something. It's mostly pain right now, but pain is good, right? I mean even a laymen would know that if you can feel it, it's working. The nerves are doing their job, and apparently so are the muscles. My legs burn and the muscles are tight and not real happy with me. But this would mean that since they are moving more than they are used to, things are waking up and coming alive again! At least that is my hope.

I figure if I've been driving all these years without hand controls (I wanted to be able to drive bad enough that I just made it work), I'll be able to walk without assistance someday too (insert the 'wanting it bad enough' idea here). And then I'll be able to jog a little, and then run, and then ride a bike, and then...

So this is great news. My first week in and I'm seeing results, and big ones. It might not be the kind of results that mean I can strap on those cute heels I've been saving and go paint the town red, but hey, Rome wasn't built in a day either now was it? And that whole painting the town red thing -- well I WILL do that all in good time.

Inspiring Others Inspires Me

Since I posted my blog "In Training: 80 Steps at a Time" only a day ago, I have had the most overwhelming response. To be perfectly honest, I wasn't looking for any response, so the deluge of well-wishes and encouragement is surprising to say the least. Add to that the idea that I am inspiring people, and well... I, too, am inspired.

Yesterday, I went to my computer and just started typing. I had been forcing myself to walk more, and the pain was setting in, and I needed an outlet... a stress reliever. Sometimes my favorite way to relieve stress is to just write about it. I am not the best writer I know, but I get the point across -- at least to myself. Most of the time I write to myself in Word Pad and don't even bother to save it to my computer. There is just something cathartic about channeling my innermost thoughts to words on a screen, or to paper, even if those words are never shared or seen again. I have noticed over the years that recovering from any sort of trauma or loss can be a very lonely road. Dealing with something that only you, yourself, can understand, is a very isolating process. When I feel this way, I share my grief with my computer or notepad and it's as if I've shared it with the world. A weight is lifted from my shoulders, negatives are purged, and I am able to relax and focus my energy on the task ahead.

I began typing in my Everyday Health blog since I use this website to keep track of my calorie intake and exercise routine. This time I wanted to be able to access these words for future, personal use. After writing whatever came to mind about how I was feeling and what I was going through, I decided to publish the blog. In so doing, I created a buzz that has since come back to me and made me soar.

After publishing the blog to Everyday Health, I also posted it to Facebook and Myspace. The encouragement and positive reinforcement just keeps pouring in. The fact that I am inspiring others is in turn inspiring me. It's coming right back to me like a happy boomerang. Knowing that people are cheering for me has lifted my spirit to a whole new level. I have heard other numerous stories of courage and determination that have given me a whole new outlook on life and how to live it. After years of isolating myself from the world and feeling like I had to deal with my disability alone, I am realizing this is not the case. If I share with whoever will listen, my struggle is not in vain. If I try and fail, someone is there to pick me up and get me going again. And even if I spend the rest of my days fighting, I can find peace in the fact that I never gave up.

80 Steps At A Time

Some people train to run marathons, I'll settle for walking 100ft on my own power.
It has been 12 years since I have walked unassisted on my own power. I have been using a wheelchair that long. I was afflicted with Guillain-Barre Syndrome in December of 1997, and since then my arms have returned (and then some) but my lower half took a bit longer. Instead of trying hard and working hard, I became angry and gave up. I sat in my chair and pitied myself for years, eating and drinking all the wrong things, and getting no exercise.
This is not who I really am. The real me would never allow me to get this bad. The real me is a fighter and a winner and never gives up. The real me is back and ready to kick some butt.
I am able to walk with crutches, a walker, canes, or anything I can put my weight on and still feel stable. When I say "able", I use that term very loosely as it's one of the most difficult things I have ever had to do in my life to just take one step. My legs, abs, back, ankles, knees... everything hurts and everything is very weak. But I trudge on, heaving and pushing and trying, finally.
I decided one day to just start walking more.  I figured I should set a goal for myself rather than just wing it with no set plan.  I started by parking my outside chair in my garage and walking to my house.  The distance is 80 steps, and so was born "80 steps at a time".  I did this until the rainy season hit Florida and then moved the walking inside.  I now use my walker indoors and on average walk 300 steps a day, some days I walk as much as 1,000.
If the mantra "no pain no gain" is true, then I must be really gaining!  Yes, it is painful, and yes it is very difficult, but after years of sitting on my ass I figure I deserve to feel the pain.  Afterall, feeling pain is good right?