FINALLY STANDING IN STANDER!

Today I accomplished an amazing goal! I was finally able to stand in the stander with my afo (Ankle Foot Orthosis) leg braces on. I can not even begin to express what this felt like, what this meant to me! I have worked so hard and there were many times where I felt like I would never get to this point and today I did it! I stood in the stander, with no straps on, for 15 minutes! There are truly no words that I can say/type right now that can express this moment, so I will let the picture/act speak for itself!!!!!

Hot Tub Physical Therapy

After physical therapy I usually have to go into the hot tub to deal with the pain that physical therapy caused and relax my muscles. But there a many times that I go in the hot tub especially for physical therapy! I do a stretch routine and also in the hot tub I have the ability to move my legs freely! About 2 years ago I was given this hot tubby my a dear friend, she hoped it would help me with my CMT. Well know one could have known that, that amazing gesture would change everything for me! After a year of being able to go in the hot tub and move my legs freely whenever I want, that is when we started seeing a difference, I could crawl around and had more control over my upper legs and that is really what made my now current journey and goal even possible! So thanks to the amazing physical therapy and time I spend in the hot tub now I am able to do so much more! Last night when I was in the hot tub, after Brandon helped me doing my normal stretch routine, I wanted to try something. I sat in the hot tub and one leg at a time, I raised my knee up so the rest of my lower leg would follow. As I was doing this, my husband tried doing it with his leg, it was nothing to him, but he could see how much I was struggling with just this basic movement that people take for granted. I was able to lift my knee 10 times on each leg. It was exhausting and caused me a lot of pain but I was very proud of myself! This is a really big part of achieving my goal! The work of lifting the rest of my lower leg, knee and under, having some control over that so one day I could lift them to walk.

Still working on the last angle!

This will be a very short post since I am still working on the final angle. You can read my last post to find out more about the final angle! I am up to 10 minutes at this angle! My goal for every angle is 20 minutes with manageable pain. Right now I am at 10 minutes with, on a pain scale from 1-10, a 7. I want to say a big Thank You to my best friend Misty who has been coming over a few times a week to do physical therapy with me, like she did on this day!

Stander at the Final Angle

I am on the final angle of the stander before it will be completely upright. This last angle is really difficult and causing me lots of pain while I am in it. So far the longest amount of time I have completed at this angle is 7 minutes. My goal for each angle has been 20 minutes with barley any pain before I move on to the next angle. So once I have been at this final angle for 20 minutes with manageable pain then I will be able to go into the stander completely upright. I want to thank everyone who has shown there support and compassion for me on this journey, words can't truly describe how thankful I am for everyone who is helping me through this! Thank you all for the love and support!

Dedication to my Husband Brandon

I want to take this time to write down what the world needs to know about my husband Brandon. First he is an amazing Father to our 10 year old daughter and we are each others soul mates. Now that you know that I can get into what this post is really about. Its about Brandon a young man, who in my opinion deserves the whole world to know how amazing he is. Brandon married me, a girl with a disease that he had never heard about, and to be honest I don't think him or me really understood what that meant for us as a couple. For the most part in the beginning, we both just did what we knew I could handle or how I could handle things. He pushed me around in a manual wheel chair whenever we went to big places like zoo's, theme parks, malls, ect. We knew that when a venture like that was done I would be in extreme pain and would need extra help for the next few days to come. But for the most part unless we did something like that, we both kind of forgot about the disease. As the years went by the disease started to affect me more and more. Brandon had to sometimes stay home from work to help take care of Jade because I couldn't move. Well in January 2011 (the story about what happened is in my blog) I became bound to a wheel-chair/power chair, I could no longer walk. This combined with all of the other difficulties this disease was causing me, weakness in my arms, hands and debilitating pain. My husband had to become my care taker. Now this is where I want to stop you, just take a moment and understand that, a young man had to stay home with his young wife to take care of her everyday. My husband did this without a second thought, after he heard what the doctors told him and what he was witnessing, he knew what he had to do. For the past almost 4 years since our lives got turned upside down at such a young age, Brandon has always taken care of me, showed me love, and the most important thing compassion!! What man out there can stay home with his young wife everyday, watch her suffer in extreme pain day in and day out for 4 years and never once not show compassion when she is hurting or needs help.
He doesn't have a dream job, a master's degree, a million dollars, a medal or a respectable title but in my opinion, in society's eyes he should be cheered for and praised, for what he does everyday! He has the hardest job in the world, watching his loved one suffer. Now I know I say thank you and how incredible you are everyday but today I chose to write it all down for the world to see! Thank you for being the most amazing man on this planet and thank you for showing me compassion everyday.

My life is truly wonderful, yes wonderful! I am so happy! Most people look at me a little off when I say how happy I am and how blessed I am. Just because my life is hard does not mean it is not blessed and filled with joy!

Physical Therapy LEG LIFT!

Today I did my physical therapy with my best friend Misty she has so much experience with this, I am so lucky to have her! We started with my stretches of course. I will show what my stretches are on another blog post. So after that we moved onto the LEG LIFT! Every time I do it, I am so shocked and proud of myself! Plus the reactions from Brandon, Misty and David are priceless! When I see and hear about there shock and excitement for me achieving this goal, it means so much! I am also so thankful for the amazing online support I am getting from everyone, it truly helps me keep going on days were I can't find the strength. I have one more thank you to give out, if you have read all my post you will know about my hot-tub and how I got it and how it really made this dream of mine possible in reality! Debbie, you have given me more then anyone ever could and the most special little man in my life and the hot-tub has helped me so much, much more then I could put into words. After I do my physical therapy, I get right into the hot-tub and it takes so much of my pain away! If it wasn't for it I would not be able to do the things I am doing today! Thank you again everyone! I CAN LIFT MY LEG!!!!

Biggest Achievement Yet!

Physical Therapy is getting more intense! Along with doing my stretches every time which already takes a lot out of me. I have started to add something new to my everyday physical therapy routine! I am laying on my back/sitting up a bit and lifting up my leg about 8in off the bed. I am holding each foot up for 20 seconds. Brandon's face when I first did it, well shock about covers it and then he just clapped! :) I groan and scream out a little bit during it, but I did it!!! It is my biggest achievement yet!!!!

Physical Therapy

 Besides working in the stander I have also been stretching everyday, that is extremely important in my physical therapy. The other day while I was doing my stretching I wanted to progress further. When I go to my specialist appointments there is many exercises that they have me do, so I wanted to start incorporating that into my routine. I did some of the exercise, then I wanted to push myself even further and that is when, twice with each foot, I raised it about 6-8 inches off the bed and held it for about 10 seconds!

Stander Accomplishment

I am moving forward in my goal! I have accomplished being in the stander for 20 minutes, with hardly any pain!!! Today was my last time at this angle! Soon I should be able to be completely upright!! I will soon be adding more to my physical therapy routine in hopes of someday being able to walk again!

10 Minutes in Stander with Mitsy!

The stander has been proving to be a lot more difficult then I originally thought it was going to be but I am very proud of the progress I have made in it! My most recent accomplishment was sticking it out for 10 minutes as we raised the angle a bit! My husband Brandon has been helping me in the stander and my other wonderful supporter of my journey has been my best friend Misty, who came over the other day to support me in the stander. It was wonderful to have her support!

I have a extremely hard time with letting people see the pain I am in, really only Brandon has seen my struggle, when I go out, I hide it, I don't want people to feel sorry for me or feel uncomfortable. I am sure people have seen my pain but I try to hide it. So when Misty came over to help me, I knew she would see me in pain and I would not be able to hide it. I am very proud of myself that I opened up and let her see, she was truly incredible with me. After Brandon helped me out of the stander I did what always happens after, collapsed onto the bed and was in a lot of pain. Misty then took such good care of me, my legs were burning, it felt like my nerves had acid running through them, she went and got some Lavender oil from the cabinet and rubbed it into my legs and it helped so much!I am so thankful to have Brandon and Misty help me in this journey!

A Rough Week

So the past week has been a rough one. On most days I can handle CMT emotionally pretty well, I am usually very positive but this past week has been one of those weeks I get every now and then where it seems like my CMT is shoving itself down my throat. The pain was extra bad this week probably because school started back up so I am having to do a lot more then usual. What has been the hardest part about this week was, just watching!!!! JUST WATCHING!!!! WATCHING!!!! It is so hard watching everyone walk around where ever they want! Watch them swing, run, walk, hop, play......Then I feel so guilty about being envious of what they get to do, so that doesn't help the situation. I watch everyone just walk around so easily, I see my family go out the door and it only takes a moment, but not for me. Everything is hard and takes so long. Imagine every time you went out of your front door, time it, I bet it only takes a few seconds, its so fast you barley even notice, for me its so hard, I need help, a ramp, ect. So apply this to everything you do during a day and some things I can't even do by myself at all. Then watching my family run and play together, its heartbreaking not to be able to join in. I can only watch them from my chair........

: I am not trying to complain, this journey is about sharing how my life truly is with CMT. Like I said most days I am ok and every single day I am grateful for the beautiful life I have! Now as this new week starts, I am smiling again and trying to stay positive!

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.