CMT:

CMT1A is a rare (1:5,000) hereditary motor and sensory demyelinating peripheral neuropathy (also known as Hereditary Motor and Sensory Neuropathy, HMSN) which is caused by an intrachromosomal duplication and consecutive toxic overexpression of the PMP22 gene on chromosome 17. CMT1A is one of the most common inherited peripheral nerve-related disorders which is passed down through families in an autosomal dominant fashion. CMT1A disease becomes evident in young adulthood and slowly progresses with distally pronounced muscle weakness and numbness. Pain can range from mild to severe. The disease can be highly debilitating with patients becoming wheel chair-bound and is often accompanied by severe cases of neurological pain. There is no known cure for this incapacitating disease.

Monday, September 8, 2014

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!
Posted by at

6 comments:

  1. UnknownSeptember 8, 2014 at 11:34 PM

    You are going to have your down days and up days, this was a down day. Next will be your up day followed by more and more up days. You can do it �� xx

    ReplyDelete
  2. Tya Fighting Against CMTSeptember 9, 2014 at 12:26 PM

    Thank you so much for your support!

    ReplyDelete
  3. UnknownSeptember 9, 2014 at 4:19 PM

    Sending good thoughts.

    ReplyDelete
  4. SukirtiSeptember 13, 2014 at 10:57 PM

    This post just proves how we take so much for granted, like basic movement. Thank you for sharing your experience. It is so humbling to read about your journey. I have faith that you will be able to beat this!

    ReplyDelete
  5. Pagan by InstinctNovember 23, 2014 at 10:50 PM

    Tya, I have to say that I, as a reader/viewer/friend, feel so truly honored reading this post. Honestly, I've followed you for a very long time on YT and we see and marvel at your positive nature. I knew that logically, there were negative feelings and days that we don't see...for you and your family. I feel so blessed to be witnessing these moments. Thank you so much for allowing us to be a part of this journey with you. Sometimes I wonder if the courage to share might rival the courage to do. This makes you twice the powerful young lady I knew from before...which was pretty hard to top in the first place! LOL A couple months late, but *HUGS* ;-)

    ReplyDelete

Subscribe to: Post Comments (Atom)