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Living With Spina Bifida #3: Struggling With Infection

Shadow’s Edge is honored to work with guest authors like Ashley Spicer, who was born with spina bifida and writes about her experience at In Ashley’s previous posts, she has written about growing up and trying to do as much as she can on her own, and about her experience joining the workforce with Project Search. Today, she writes about what it’s like as a person who lives with spina bifida to fight the dangerous infection known as MRSA.

About three-and-a-half years ago, I started my journey with a bone infection. I was at the hospital for a check up. I can’t remember if I just wasn’t feeling good or why exactly I was there in the first place — everything at the very start was a blur to me. Anyways, they took my vitals and everything was off. My temperature was sky high, my heart rate wasn’t right, and no one knew what was going on. All I knew at that time was that I didn’t feel right at all and I wanted to pass out.

The doctors soon found out that I had a pressure sore. At least that’s what they said and thought at the time. From then on, I had countless surgeries and hospital stays. I even had to miss some of high school, which set me back a lot. After about two years or so they finally figured out I had MRSA, but it wasn’t contagious so I wouldn’t give it to anyone. We were all stunned, how does an infection come up out of nowhere?

We didn’t know the exact answers but it could be possible that something got into my body with one of my other surgeries and it just broke through over time. It makes sense.

Since I was in the hospital for a long time throughout this journey, you can only imagine how bored I was getting. You can only watch so much tv and listen to so much music until it gets very, very old. I decided to make cards for other people in the hospital. I knew for sure I didn’t want to be there, I can’t even imagine what they felt like. My goal was to make other people smile and know that I cared for them. I know it sounds silly but that’s just a part of who I am.

During those next couple of days, I wrote out a bunch of cards and had the nurses give them out to everyone. I was the talk of the floor but that didn’t matter to me. I never wanted recognition for anything that I did. I just wanted to make people happy, that’s my main goal in life.

A couple months after that I went back for another surgery, the same one I’ve had over

and over again. This time, the doctor made a mistake and hit a blood vessel. Usually after the surgeries I would be put back on my wound vac. This time, as soon as I was hooked back up to the wound vac, the blood just kept coming and coming. It filled up the container right away and it still kept going. They finally took it off me but I quickly got dizzy and the last thing I remember saying to the nurse was, “I feel really dizzy, is this normal?” I heard her say “what?” and then I passed out completely.

That had to be one of the scariest days of my life. I really thought I was going to die from losing so much blood. I woke up with IV’s in both my hands while getting blood into both of them. I believe I got a total of 4 bags full in me that night.

I don’t care what anyone thinks, I truly believe god saved me that night. I am here for a reason and I have a purpose. Life truly is way too short to be angry and hateful. It doesn’t matter what you are going through, fill your mind and thoughts with nothing but positivity. Always have a smile on your face and let the world know who you truly are. You will go far in life if you have a positive attitude & look at the brighter side of things. The struggles you face in life will truly make you a stronger person in the end, I promise you.

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