It’s January. The start of a fresh new year. With the new year, comes new hopes, new dreams and new challenges for most people. According to debra.org, there are at least 17 beautiful butterflies who lost there battle in 2018. I’m sure there are others that have not been added to this list, but even 17 is too many.
It’s a New Year.
I went for a walk last week on New Years eve with my mom and my son. I wore a different shoe than normal. I couldn’t find my normal slip on’s with the memory foam insert, so I wore what I had. It wasn’t too bad, I only walked for about 10-15 minutes took a good 30 minute break and then did the 10-15 minute walk again.
I did this walk because I had to take my daughter some clothes for a sleepover at her friends house. They don’t live very far, and I didn’t want to risk losing my parking space. See, parking in my area is terrible. Thankfully, I have my disabled placard so that when it is really bad, I don’t usually have to walk too far. Losing my parking place and having to walk an extra 5-10 minutes when my feet are bad could put me out for the rest of the evening.
Anyway, when I got home and removed my shoes, I could see the forming already of a couple small blisters. Okay, not too bad. I knew that as long as I was careful over the next few days I could keep them under control.
Overnight, one of the blisters on my heel had grown significantly and I was forced to get out my first aid kit and use my scissors to cut a hole in it so it would drain. I wrapped my foot and went about the rest of my week. I got pretty decent parking and over the weekend, I pretty much hung out around the house. Currently, I have two or three tiny blisters, but overall it’s not to bad at all.
I’ve decided to try and do a monthly post for all of you about all the lovely butterflies out there. As stated above, there were more then 17 butterflies that did not make it through the New Year.
This is my page, my life and my journey.
My name is Katrina and I was diagnosed at 29 years old. My symptoms appeared when I was only a few months old before I could even walk. No one knew what was wrong with me and even searching “Google” proved not to provide many answers.
I have EBS. It’s primarily located on my feet, but does also appear on my hands and even more recently my inner legs. Growing up, I didn’t know what was wrong with me and I wished I could run and play like all the other kids. I’ve been teased and picked on. I’ve crawled and hopped places. I hate shoe shopping and I’m in a lot of pain most of the time.
I also love to read and write stories. I love Harry Potter and Cats. I am a wife and a mother (so far 1 EB child and 1 Not). I am a sister and a daughter.
Please check out my story and please share with others. No one deserves to go without knowing what is wrong with them. Please share so that maybe one day we will find a cure. Please ask questions and reach out. There are many of us and we are no alone.
Here’s to 2019. A fresh year. A new year and hopefully this is the year we find a cure.
