After my injury I dealt with a multitude of medical challenges, but none that tested my strength of will as spending nearly a year in bed due to a stage 4 pressure sore on my tailbone from 2015 to 2016. I was injured back in 2010 and I was fairly confident five years on that I had experienced the brunt of my medical challenges, and that life would be pretty smooth sailing. From 2013 to 2015 I frequently battled with a small red spot over my tailbone, which would come and go, but I figured it was just part of spinal cord injury.
I moved back from living in China in June 2015 and shortly thereafter this little red spot on my tailbone opened up into a full-blown stage 3 pressure sore. For those of you unfamiliar with the different stages of pressure sores:
A red mark on the skin that does not turn white when you press it = no blood flow to the area.
The skin opens up ever so slightly.
The wound is now down to the subcutaneous fat level.
The wound is now down to the bone and the bone is generally exposed.
I went to see a multitude of wound doctors and ended up firing all of them. After months and months of staying in bed, turning every three hours, and trying to figure out what I was doing wrong I went to go see a plastic surgeon.
Long story short he informed me that I was born with an extra vertebrae in my tailbone, which was literally poking my body from the inside out. Six months after dealing with all this I went in for my first surgery to just remove the tailbone.
I was ordered not to move out of bed for six straight weeks. Unfortunately, a drain was not placed after surgery and I started bleeding from the inside out. The wound opened up and I now had a 4 cm long, wide, and deep cavern right down my tailbone. You could actually touch my tailbone, what was left of it anyway. These are my least Gross pictures;)
I was then ordered to have a wound VAC placed on the tailbone, which yielded negative results after three months. Finally, nine months after this headache I was having to endure we opted for flap surgery. This is where a surgeon essentially takes a large chunk of your fatty and healthy tissue on one or both sides of your butt cheek and places it over the old pressure sore, which they remove with a cauterization knife. This is a simplified explanation, but you get the point.
I was then confined to the ICU for four straight weeks due to a series of dysreflexic episodes I was having where they could not keep my blood pressure under control, and I was passing out several times a day from high and low blood pressure. I think they were absolutely terrified and did not know what to do with me. A very common occurrence with spinal cord injury I might add!
Now I was on strict bed rest on a highly specialized mattress that kept me floating in the air called a Clinitron mattress for the next four months. Many people have to go to a nursing home for this recovery, but I was fortunate enough to find a guy who had one of these beds and sold it to me at a fabulous price. Very slowly over time when the wound healed, staples came out, stitches came out, etc. I was slowly allowed to sit up for an hour, an hour and a half, two hours, etc. It was the absolute most invigorating feeling to go outside for the first time to see grass or a tree.
How did I cope?
PART 1: Intellectual Stimulation
As one can imagine an experience like this can probably and does probably drive many to depression, insanity, anxiety, etc. Naturally, I did go through various stages, but I simply knew deep down that I had to find a way to keep myself stimulated if I was going to survive and move on with my life.
Once the pressure sore started to get serious I literally wrote out a plan on a word document. I created a very strict schedule for myself every day even if I was not able to leave my bed. I would wake up in the morning, do all that fun spinal cord injury stuff like catheter change, bowel program, cleaning the wound, etc. I would then have a caregiver hold these Theraband stretchy bands for me where I would work out my arms. I may not have been able to get up and exercise as a used to, but, dammit, if I was going to be stuck in bed I was going to be in great shape for being in bed 🙂
I then wrote out a plan for intellectual stimulation that would span over the course of the next year. I have so many interests such as physics, nutrition, trading, keeping up my Chinese language skills, etc. I actually wrote out a lesson plan for myself every single day, week by week, month by month. Sometimes I would even exhaust myself thinking about all the things I had to do in a day. Some people said to me I should just rest, but the problem with me and just sitting there is that I would think about the high levels of nerve pain I was experiencing from the pressure sore. Further, if I stared at the ceiling I would think about how much my particular situation sucked.
I made a decision early on not to let this pressure sore defeat me… As it progressed from a stage 3 to a stage 4 I was acutely aware that these things could take up to one year to heal. I looked at it like this… Think about a first year law student … their first year is pretty much hell with going to class, studying, finals, etc. They have no life, they have no time to do anything except advance their knowledge in a certain area.
Well, I looked it at the same way. I pretty much gained a personal Master’s degree and perhaps a PhD in different areas of study that I have always wanted to pursue my life, but had never had the time.
PART 2: SILLY & AMUSING ANTIDOTES
Before my major Flap surgery last year, when I have the wound vacuum on, I decided to start online dating. Yes, I know this may seem completely and utterly insane. I had a giant hole down to my bone on my backside and I was set to have a second surgery in a few months. Well, I thought to myself if I don’t make it through surgery I might as well live the last few months of my life to the fullest. I immediately got to work and had a date within 48 hours. What did I do with my pressure sore you may ask?.
Honestly, I put a piece of sterile gauze in it, covered it with a very specialized Band-Aid and went out for a few hours. It probably wasn’t the smartest move, but after being in bed for so long, and knowing that they were going to slice and dice me in a few months anyway I went for it. My dating adventures are definitely for another column, but this kept me wildly and thoroughly amused for many months.
Interestingly, what followed these dating adventures turned into what you are now reading — The Quirky Quad Diaries. It was born organically after my dating adventures and I realized I could use my Facebook blogs as an avenue, to amuse people, enlightened people, hopefully motivate people, the most important to make people laugh. If I had not had a stage 4 pressure sore who knows if I would be writing this right now!
Finally, when I was stuck in the ICU for several weeks I decided to keep myself amused. You must understand that I had numerous tubes and wires coming out of me from every direction with over 200 staples in my ass, 400 stitches, etc. So, what is a natural thing one does in the ICU? Well, let me back up and ask what you think I would do?
In general one does not feel very sexy in the ICU… So, I decided to flip this upside down on its head. With the help of my mother and caregiver I dressed up in as sexy attire as one can in the ICU for several photo shoots. I had doctors and nurses coming in left and right, laughing, giving me the eye, not knowing what to think, and just generally approaching me with amusing bewilderment.
I had the grandest of times!
I will say this … While I never wish what I went through on any person in the entire world, if I had not gone through what I did several things would not have transpired in my life:
- “An Engagement to Remember” - August 22, 2018
- Wheelchair Air Travel – “Quad” Style - July 25, 2018
- Cruise Ship Adventures & Wheelchairs – Lessons Learned - June 21, 2018
- The Ancient Philosophers were on to Something – Overcoming Negative Emotions - March 28, 2018
- Moving Mountains Paralyzed: How to Win Insurance Battles - February 6, 2018
- My First Solo Trip with my Boyfriend as a Quadriplegic – The Art of Compromise - January 6, 2018
- CAREGIVING for Quadriplegic – Living in Fear or Trust? - December 10, 2017
- Danger: How Negativity About Disability Can Create Chronic Inflammation - November 18, 2017
- Spinal Cord Injury Sexuality: How I (Unexpectedly) Fell in Love - November 9, 2017
- How I Vacation as a C6 Quadriplegic - October 28, 2017