Stander highs and lows!

My 2nd time in the stander, my goal was 10 minutes but we found out very fast that this will be much harder than we thought. After only a couple minutes of being in the stander my feet and ankles were in so much pain (know this blog will be about my true honest experience,so I will say exactly how each day goes and that is very hard for me because I am use to not showing or saying when I am in pain to anyone besides Brandon, my husband) So after I was in the stander for just a couple minutes, the pain shocked the hell out of me. Brandon got me down and helped me through the pain that didn't go away for hours, it felt like my ankles and feet had thousands of needles filed with a burning liquid going into me. It burned for at least 2 hours and this was only after being in the stander for about 5 minutes. So now my plan is to go into the stander just for a few minutes each day and start from a lower incline and work my way up until it gets better. I'm scared of the pain and it's going to be so hard but I will keep going. But we didn't expect just standing would cause this much reaction but we didn't know what to expect from what I am trying to achieve, we knew the walking bit would be unimaginable but we didn't know just standing would be this bad and I am even in a contraption that stands me up without me trying.

Stander!!!!!

 I was giver this stander by my dear friend Misty. Brandon helped me get into the stander and then he strapped me in. It was extremely exciting to stand by myself and to have Brandon not helping me, he just got to look and watch me stand! So this experience was amazing but after just a minute or two I started getting light headed just because I have not stood in so long and my head was adjusting to being so high. Also after a few minutes of being in the stander I started to get extreme nerve pain shooting down my leg and into my feet it was very painful and for my first time being in the stander we didn't want to push it, so after 5 minutes I got out of the stander. With my disease you have to be very careful, you can't push to much or to little, this disease reacts badly to to little or to much so it will make this physical therapy journey more difficult but I am here and ready to go for it no matter what! I will be doing physical therapy once a week!

VIDEO! Telling what I am trying to do!

CAN I DO IT? CAN I WALK???

Once you have read my previous 3 blog post and are up to date on my story, I will begin to let you know what this blog is really all about........
It has been over 3 and half years since I have been able to walk. My doctors said there was a 10% chance of me walking again but really didn't give me much hope, later on in my story you'll read that I was about to get KAFO's (leg braces) but the doctors only said they were giving them to me to help me be able to stand  but why stop there is what I could not stop thinking. My dad who has CMT wasn't able to walk for 5 years and then he found happiness and a new drive he started being able to take a few steps (that is all he can do). So he could do it and about this 10%...well who says I can't be in that group!!?? You always see on TV these miracle stories of people who were told they would never be able to walk again and then they proved the world wrong! So after years of living with doubt and in a cloud of darkness, slowly over time...my fire came back, my joy and happiness! I started making changes over the past year all thanks to somethings that changed, if you read the previous blog about the hot-tub.but then you will know, well when this warm water came into my life, I was able to start moving my legs all the time and Brandon and I started a stretching routine for me that I would do a few times a week in the hot tub, so now after almost a year, I started noticing that I had much more control of my upper legs. So I started learning how to drive again and on standing but I could not stand by myself and crawling. So when I found out I wasn't able to get the KAFO's because it couldn't be covered by my insurance, well I made a choice after I realized that I wouldn't get them...I could either choose to give up and wait for them to be covered or I could make the decision to SCREW THEM AND SCREW EVERYONE WHO HAS TOLD ME I CAN'T AND JUST TRY ANYWAYS!!!!! So that is what this blog will be about, my journey, my progress and just trying!!!! I figure, I can't walk any less, lol so there is nothing to lose! So I am just going to try!!!!!!! Read about my plan on my next blog post!

KAFO's (Leg Braces) Story

UPDATED: 8-12-2014
It been months and months it looks like medical won't cover my KAFO's!!!!! (read below to find out about the story of my wanting KAFO's):  

 March 21, 2014     I have some very very exciting news! Yesterday I went to UCDavis to see my CMT specialist to show them some changes I have been making and some changes I want to make! So around 6-7 months ago something came into my life that changed everything! So my wonderful friend Debbie gave me her hot-tub that they never used hoping it would bring me some comfort. Well up until that point (for over 2 years) I only could move my legs on my bed, but then when this warm water came into my life, I was able to start moving my legs all the time and Brandon and I started a stretching routine for me that I would do a few times a week in the hot tub, so now after that long time I started noticing that I had much more control of my upper legs. So I started learning how to drive again and on standing but I could not stand by myself. So I went to my specialist and told them all about the changes and I told them how much drive and fire I have in me to live, live life and to make my situation better. So we talked all about it and.......there are going to fit me with full leg braces so I can stand by myself (with a walker and brandon's help)!!!!!!!!!!!!!!!!!!!! Its going to be a very long process about 6 months but then I will be able to stand by myself and just that act alone the doctors say will be amazing psychical therapy. I am so excited to stand!!!!!! I can't stop smiling at the thought of standing!!!! 

When I wasn't able to walk anymore...

This was written right after it happened....back in the very beginning of  2011

Well with my disease, this is very hard for me to say (write) I am still in complete shock myself....but me, Brandon and my mother all went to the number one hospital in my state, to see my specialist and ask why has this happened, why am I not walking....and just to sum it up he said after running many test, that I was already hanging onto the line by a thread (the line: of past the point to no return) when I came into to see them in January and then my vacation to Tahoe, I did so much physical activity (trying to snowboard), push my body way to far (usually I can go on a vacation and then I just have like a 2-3 day recovery time where I can't walk) well this time, I haven't been able to walk since January, I thought I would go into the doctor and he would say oh you will get better soon....but no, it was me, Brandon and my mom sitting there, hearing the words, with this disease there is a "line" and if you go under that line, you are past the point of no return. Then he said the words "There is no easy way to tell you this but after looking over you and testing you, you will probably never walk again". Brandon had to quit his job, I am on ssi though so we will be ok and Brandon helps me move and I am getting a power chair in a couple months, its a long process so I am just in a wheel chair right now. I am on pain meds to help with the pain from the disease. Also Brandon became my care taker. We are in shock.... 
VIDEO OF EXACTLY WHAT HAPPENED AND FOOTAGE FROM THAT DAY. 

I was born with CMT!

Charcot-Marie-Tooth Disease (CMT):
 Charcot–Marie–Tooth disease (CMT), also known as Charcot–Marie–Tooth neuropathy, hereditary motor and sensory neuropathy (HMSN) and peroneal muscular atrophy (PMA) — is a genetically and clinically heterogeneous group of inherited disorders of the peripheral nervous system characterised by progressive loss of muscle tissue and touch sensation across various parts of the body. Currently incurable, this disease is one of the most common inherited neurological disorders affecting approximately 1 in 2,500 people.

~ CMT was discovered in 1886 by three physicians for whom it was named; Jean-Martin Charcot, Pierre Marie, and Howard Henry Tooth.~CMT is usually inherited in an autosomal dominant pattern, which means if one parent has CMT, there is a 50/50 chance of each child inheriting the disorder.~ It is slowly progressive, causing deterioration of peripheral nerves which control sensory information and muscle function of the foot/lower leg and hand/forearm.~ Depending upon the severity and type of CMT, it may cause foot-drop walking gait, foot bone abnormalities, high arches and hammer toes, loss of muscle tissue, problems with balance, problems with hand function, occasional lower leg and forearm muscle cramping, loss of some normal reflexes, scoliosis (curvature of the spine) chronic pain and sometimes, breathing difficulties. ~ Patients may lose feeling in their hands and feet, putting them at risk for blisters, burns, and sores.~ CMT has no known cure, although physical therapy, occupational therapy and moderate physical activity are beneficial.~  It does not affect life expectancy, but can, in rare instances, cause severe disability.~ CMT can be detected at any age. Typically, the first signs may include leg weakness, frequent tripping and falling.~ It can vary greatly in severity, even within the same family.