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Persevering Momma

Taking The Day One Spoon At a Time

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A Superwoman Vs. Her Invisible Illness

July 18, 2020 by Ashley Leave a Comment

Some days are better than others. Some days I feel like superwoman and I feel like I can conquer the world and then there are other days.

Days where the world beats me. Days when every little thing I do hurts and I feel completely defeated. These days almost make me wish I never had food days.

These days make me wish it was always the same so that I could get used to the pain and make it wash away like so many other aches and pains I have made disappear, but I know I can’t make that happen.

Instead I have to push through these crazy pains and tell myself I need to keep going.

So, here I sit repeating over and over…

It’s not real.

It’s not real.

It’s not real.

And I repeat this because 10 minutes ago I stepped on a tiny crumb on the floor and it hurt so bad that I saw stars and still have shooting pain coursing up my leg from the bottom of my foot.

Today might end badly, but that doesn’t mean tomorrow will end badly. I’ll take a deep breath and wish, wish for a better tomorrow instead.

Goodnight world. Goodnight CMT. You didn’t win this time.

Filed Under: Featured, Health Tagged With: CMT, Health, life, Parenting

My New Life and My New Home

May 22, 2014 by Ashley Leave a Comment

My life this year has been pretty crazy and intense.  I am used to normalcy and living a life that is very predictable.  I made the choice to move my life forward this year and on January 15th I did just that.  I packed up my car with my two cats and anything I could fit in my little Ford Focus and made the four hour drive from Waterford, MI to Roselawn, IN where my new life was to begin.  I was nervous and scared and that day was the hardest one I had gone through in the past six years of my life.  Before making this move the hardest thing for me had been giving up my beautiful daughter for adoption.

The next few months were very hard for me, but I loved it.  I was able to make a new best friend with a lovely young woman who will always mean something special to me.  She pulled me out of the darkness that I was feeling.  She helped make me go outside and live life again.  I can say that I do not think I would be the much stronger woman that I am now if I had not had her support and strength to help me out.  Every day I miss my dog, Kratos, but I know that there is no way that I could have taken him with me because I was not his true owner.

happy kratos
I miss you big boy!

With that being said I love my new puppy just as much if not more that I ever loved Kratos.  Luna is crazy, insane, and so very special.  She is my love, my strength, and my life.  She makes it possible for me to keep moving forward.  She reminds me that I have a reason to live and a reason to keep going on a daily basis.  She is an amazing dog and I am so glad that Melissa helped me pick her out and name her.

Photo courtesy of Andrea Klee.
Photo courtesy of Andrea Klee.

The time came for me to move again as my friend Melissa sold her house and I needed to be moved within a week.  It was a very hard week for me and it is why I was mia for awhile.  I was in full on panic mode as I did not have a place lined up for me to go to.  I was lucky enough to find a great home in Hartford City, IN to move.  I now have a new roommate and am fully moved in.  Luna and Deimos made the move successfully though I will morn the loss of Gonzo for some time as he ran off during the moving process and I was unable to find him.

Gonzo you will be missed!
Gonzo you will be missed!

For now I am still working on unpacking all of my things and finding a home for all of my possessions, but I am slowly turning this room into my own and I am making it a much girlier home than it was before I moved in here. It will no longer be a bachelor pad.  With this I shall end this and just say that I am grateful for all of my family and friends who have been here for me all year.

My new home.
My new home.

Filed Under: Featured Tagged With: Deimos, Gonzo, life, Luna

Tips For Living With CMT

February 5, 2012 by Ashley 2 Comments

I started this blog to talk about saving money and giving daily living tips.  One thing that I want to start incorporating into my blog is little tips that I use on a daily basis to make my life easier.  As I mentioned in my About Me section of the blog I am disabled.  I did not mention what I have, but today that is what I want to talk about.  A couple years ago I started a blog Is it My Teeth? it never took off because I didn’t have any followers or much time.  I only have half a dozen posts on there, but I will be using some of the information from it on here when I talk about it.

What is CMT?

CMT is a disease that affects the nerves in the arms and legs as well as hands and feet. Over time the nerves get hurt and begin sending false signals as well as begin to lose the signals on the way to the area. The nerve damage affects sensation and muscle strength in those areas. There is often evident muscle wasting in the hands, feets, and lower legs. Another common symptom of CMT is a foot with either a very high arch or one that is completely flat. I will provide pictures at a later time of my high arched foot and slightly wasted hands.

My Life and CMT

My CMT has affected me my whole life although it never really starting getting bad until I was a freshman in High School. Up to that point I had been in Physical Therapy instead of participating in my P.E. classes and was unable to run, jump, play ball, ride a two wheeler, or skate. These things all slowed me down from my friends, but I still kept going. My freshman year I tried wearing leg braces (AFOs) to help out with all of the tripping I was having due to the high arches and the fact that I have foot drop, where you big toe is lower than the rest of your foot due to a bone movement. This did not work well for me as everything we tried hurt my feet so, finally after a year of trying this I gave up and went back to avoiding stairs and taking the elevator.

In High School I felt very singled out leaving classes early to make it across the large campus in time for my next class and the help I had with extending my test lengths as well as note taking help due to my fine motor issues. By the time I graduated High School I was unable to write for more than 10 minutes without having to put the pen down and relax my hand. I would sit there doing some stretches that I hand learned to help relax the muscles. This has continued to worsen over the past few years and I have learned to type well and use this method more often than handwritting.

After my graduation I also took the time to learn more about my disease and I wrote an essay about it for a college class. During this I learned about the CMT Clinic in Detroit, MI where I decided to make an appointment and see what they had to offer me. Doing this was the best thing I could have done.

By deciding to go myself I convinced my family members who also have CMT to go as well (on a different day). We all learned that we have CMT 1B.

 

Image Credit to Allardint.com

I also was taken to a new specialist who was going to help me out trying on a different kind of AFO. This AFO is amazing and fits perfectly. It helps me walk in ways I never knew I could. This leaves me now with the same braces and the same pregression that I am dealing with today. I never know what will happen the next day and it frightens me often, but I try to do my best.  

Filed Under: Featured Tagged With: CMT, life, personal, story

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