In Kelly’s Words – Vulnerability

I understand about myself that I often have a hard time being vulnerable. As much as I am an open book and share a lot about myself through this blog, it sometimes feels difficult to talk about the “harder”, maybe more embarrassing things.

I want to share my experience about dealing with a pressure sore over the last 2 months to hopefully allow for greater understanding of what people with spinal cord injuries need to think about and deal with, and (again, hopefully) provide some understanding for others dealing with something similar.

Since the end of May I’ve been dealing with a pressure sore on my tailbone. Just yesterday I got the all clear from the wound specialist I have been seeing to return to normal activity. I haven’t had any discomfort or pain, it has just been extremely difficult to press pause on life while it heals.

For those who don’t know what a pressure sore is, it is a common skin complication that can happen to someone with an SCI or other sensation deficit. Pressure sores happen when there is extra pressure or an injury to an area that I can’t feel and I continue to sit on it or I do not remove that pressure because I can’t feel it so I don’t realize there is an issue. Or the more technical definition: an area of the skin or underlying tissue that is damaged due to loss of blood flow to the area.

These injuries can happen from silly things like dropping a penny in your lap and then sitting on it all day and not realizing it. Or not transferring well, hitting your butt on your wheel, causing a bruise or scrape that doesn’t get better. Or a bug bite! For me, I have no idea what happened. Most commonly these issues occur on your butt (either your sit bones or tail bone) because this is where there is the most pressure all day, though you can get skin issues in other places like where shoes rub on your ankles or where your back hits your backrest.

I use a mirror to check my skin every night when I get in bed to make sure it looks healthy. One night it looked perfect, the next night there was a black spot over my tailbone. Within 24 hours of seeing the black spot (and staying in bed that whole time) it was swollen, red, and obviously infected.

I first went to the Emergency Room because of the infection and was put on antibiotics. A couple days later I was seen by a wound specialist who told me I had a stage 3 (out of 5 stages) pressure sore and would need to be out of my chair and laying down for, likely, 6 weeks. Yikes! This meant out of work (I work 3 days a week as a pediatric nurse practitioner) and worse, it meant not helping at home.

There were a lot of emotions that I ran through at the start of all of this. One of the most prominent was embarrassment. How could I have let this happen? I’m a leader in the SCI community, I’ve had an SCI for 14 years, I know the risk of pressure sores. Not to mention that I’m a nurse practitioner so I understand the health risks and implications even more than someone else. With all of this I have to remind myself that even if I do everything right, something like this can still happen. I’m hoping that talking about this encourages others with SCI to stay vigilant but not be embarrassed when it happens – it can happen so quickly! And for those that are learning about SCI through my blog or your involvement with the KBF, I want to be able to talk about the “side effects” of an SCI so that we don’t need to feel embarrassed!

The experience of having a pressure sore has been characterized by an overwhelming feeling of helplessness. Zeke has had to take on everything (cooking, cleaning, getting the kids ready in the morning, making lunches, putting the kids to bed, and everything else in between) and has never complained once. If anything he’s my conscience, telling me to do even less in my chair and he’ll take on more. Even so, lying on the couch while the kids run around and not being able to help manage them or make dinner was really hard.

Both kids adapted really well. Dylan will lie next to me and read books or do her activity books with me on the couch. Nell loves to show me toys she’s playing with or play peek-a-boo. We have been eating all of our meals in the living room with me lying on the couch, Dylan and Zeke eating at the coffee table, and Nell in her highchair. I’m so thankful they have all adapted so well and Zeke has been so willing to figure out how to make our family still work with me lying down all the time!

This may seem obvious, but the other part of my life that was affected by my pressure sore was that I could no longer be active. I couldn’t get out and ride my bike or play golf or go for walks in the fields around our house. I made a point to get outside and lie on the couch outside every day that I could but that’s not quite the same. I’ve really missed being active.

Even though I’m now cleared to be in my chair full time and return to normal life, I still have to be careful. The spot where the sore was is very fragile and could be injured again easily. I likely won’t be in my handcycle much the next couple of months because that position puts a lot of pressure on my tailbone and potential for “shearing” (force exerted parallel to the skin’s surface, basically sliding), which can also cause a lot of damage. My hope is to be in my offroad handcycle where the potential for shearing is less and I can pad my tailbone more effectively.

In all I spent 5 weeks almost completely out of my chair and out of work. The last 3 weeks I have been going to work part-time, 3 days/week and spending the afternoon lying down, slowly increasing my time in my chair. The silver lining in all of this is that I have had no discomfort (other than a fever the first 2 days). I have no pain but I just have to be lying down.

I have heard from a lot of people “you must be so bored!” While that’s kind of true, in some ways I’ve really enjoyed this time. I have read a lot, done a ton of New York Times crossword puzzles (on their app), and spent more time than usual helping out at the KBF.

I’m a firm believer that things happen for a reason and have kicked around ideas with my sister about the reasons for this sore. In some ways, this was a nice break, an opportunity to slow things down, refocus on what’s important, and find silver linings. I also recognize that may be a reflection on my personality. Zeke in this same situation would have gone completely nuts, and that’s the sentiment I hear from most other people sidelined for months with a skin sore. But in some ways I’ve seen the best of my girls, the best of my husband, and the best of my friends. I’m going to ramp back up now placing emphasis and priority on what is most important, what I missed the most.