Skip to main content

Posts

Showing posts from April, 2021

About Me

My photo
Humbly Courageous
Hi, I’m Amy. I live life with a condition called Bethlem Myopathy which is a rare form of Muscular Dystrophy. I like to help others by showing how I live well with a debilitating condition. I was born with this disease, so it’s the only way I know life. I continue to work on embracing myself and using that to help others.

Followers

Recovery Week 1, SVF Stem Cell Treatment #2

Welcome back! Well, I survived week one post double SVF stem cell procedure, and also got word that the half of my cells I am banking arrived safely at the cell bank. That was a relief! One thing is for sure, there was a definite difference in the single procedure recovery vs. the double procedure recovery. There has been a lot more pain this time. I am still very sore from the procedure. The bruising is getting better, but definitely still there. Also, the area is still swollen and very tender to touch. Each day I have just taken it day by day. I have had some good days, combined with some really painful days. The pain is from the actual procedure, but also I have had some achiness all over that has been pretty persistent and miserable this time, as well as feeling very fatigued. However, I know I am only about a week post procedure, and all of this is to be expected. Allowing your body to heal is important to the process! The first couple of days, I just had a hard time finding a com

Moments Like This-Stem Cell Treatment #2

Well, I survived my Stromal Vascular Fraction (SVF)  stem cell treatment #2! As mentioned in previous blogs, this one was a double harvest, meaning half of the cells taken were sent off to a cell bank for future use. Going into this day, I felt the anxiety building because this time I knew what to expect. I knew there would be pain, and some uncomfortable moments. In preparation for this time, I requested some medication to help calm my nerves a little. Excited to go! My rock Before heading into the office, my husband said a beautiful prayer for me as I clung to his hand. He is truly my rock. Arriving at 8:30 a.m., I took my first dose of medication as soon as I got into the office, which I was honestly so thankful to have this time around. The nerves and emotions were definitely in full force by the time I arrived. After a few minutes of arriving, I was taken into the consultation room. My doctor came in, and we discussed where he would harvest the fat from this time. If you have read

F E A R

Hello and welcome back! Fear....as defined in the Merriam Webster dictionary, fear is an unpleasant often strong emotion caused by anticipation or awareness of danger accompanied by increased autonomic activity.    I started having surgeries when I was about 2.  It's not like as we get older our fear goes away, but I think the way in which we express it becomes different. As a child, I felt like I was able to express my fears more freely, and usually did that through crying mostly. I can vividly remember a lot of my departures from my parents as the surgical teams wheeled me away from them, always at a certain point before entering the OR. They were only allowed to go so far with me. The bed I was being wheeled in would stop, and I would hug my parents, listen to them tell me to be brave, and tell me it would all be over soon. I know they were scared too, but they never showed it. As a parent, I can now imagine the fear and anxiety they must have felt themselves. Then I would be wh

Ahhhh....the familiar sting of disappointment

I'm sure you have all dealt with times when you've been disappointed. The kind of disappointment that comes and sucker punches you in the gut. The kind you weren't expecting......at all. The kind of disappointment that just places you in a dark place, and you don't know how you will ever get over it. But you do, or you learn to live with it. I've had several times in my life where I have dealt with that kind disappointment, and most recently this week. The ways that I have dealt with these types of disappointment in my life has definitely evolved though.  As someone living with a disability, there are a lot of sucker punches when it comes to disappointment. Starting as a child, one thing that sticks out to me in particular is gym class. I dreaded gym. There were so many activities that I didn't get to participate in. I had a spot on the wall that I would go sit against. Sometimes, if there were kids who were injured, or maybe not feeling well they would sit ther

Apology Accepted

I got a message a couple of weeks ago, from a guy I went to high school with. The message he sent broke my heart. He told me that he had once said something when we were playing volleyball together in high school (well, I was standing there, not doing much playing haha, the ball always seemed to be attracted to my face somehow, but hey I was trying!) Anyway, he told me that he didn't realize I had a disability and made what he thought was a flirty comment. If I'm just standing or sitting, you can't really tell I'm disabled until I start walking. He told me that as soon as he made the comment about me not getting to the ball fast enough, or something of that nature, I moved. He could see then that I was disabled, and he instantly wanted to disappear. I remember it. It was awkward, but I knew he didn't know when he said it. I think I tried to laugh it off, as I often did. I laughed to help the person who said the unintentionally hurtful comment feel better. Senior Pic