SCI Awareness
SCI Awareness Month
This month is represented by a green ribbon similar to the pink cancer ribbons and yellow “support our troops” ribbons. I remember making a similar post last year when it felt like I knew all that there was to know about spinal cord injuries. Making this one just goes to show how much there actually is to learn about this SCI life. I am certainly curious to see what my take on spinal cord injury will be next September.
I am a naturally inquisitive person so I definitely cast no shade towards someone that may want to know more about my life and everything that being paralyzed comes with. Saying that there is a lot behind the scenes and past the lenses of what you see through me physically is certainly an understatement. This will be my attempt at educating on what spinal cord injuries can entail.
First, I want to state that no two injuries are the same. The slightest differences in the injuries can change the outcomes and functions of the individual in crazy ways. For example, I am classified as a C-4 complete injury as are thousands of other individuals but I am able to things that I realistically shouldn’t be able to do and vice versa.
The exam that the doctors use to treat and label is called an ASIA (American Spinal Injury Association) exam.
I’m not going to sit here and claim to know exactly how this works but it is a physical examination done by a spinal cord doctor to help establish an accurate account of an injured patient. The scale lists you as your last healthy vertebrae which for me is my C-4 (4th cervical vertebrae) because the bullet impacted my C-6 & C-7 vertebrae and caused blast damage to my C-5.
On top of that, the bullet went through a nerve bundle called the brachial plexus which caused a significant amount of nerve damage down my right arm which is why my right arm is much weaker than my left.
There is also a huge difference between feeling (sensation) and function. Each vertebrae has a nerve supply that causes a muscle to move. An example is that I can flex my biceps but not my triceps because the C-7 vertebrae controls the triceps and that vertebrae is below where I was injured. I am listed as a complete injury meaning that I have no sensation or function below my level of injury.
I really hope that I was able to educate anyone’s curiosities just that much more by explaining how these injuries work. I won’t try and overload anyone today because I have all month to go into detail but I hope that this post is a good starting point and is able to open up some questions from anyone. I am an open book so just ask!
Here is a chart of basic information and statistics regarding SCI. Check it out!
Thank you for the quick read and check in each Monday this month for more information and more of my personal story!
Thank you for the quick read and check in each Monday this month for more information and more of my personal story!
Part 2: Autonomic Dysreflexia
If you know me, then you know that I like to complain about everything... all the time. I do it jokingly of course. I’m actually really optimistic but it’s more of a “laugh at my pain” kind of joking. I think that one of my most used statements is “I feel like garbage”. It’s broad enough to cover general discomforts all the way to life threatening debilitations. But what does it actually mean? Why am I saying this if I can’t actually feel? Time to dig into one of the many ‘secondary conditions’ that accompany a spinal cord injury.
Say it with me... autonomic dysreflexia. Sounds ridiculous right? I thought the same thing when the doctors first told me about it. Hence why I call it “feeling like garbage”. So what exactly is this fancy doctor word? First, I’ll give you the technical definition and after, I’ll describe it in ‘high school level education’ terms.
Skip down if you don’t want to read technical jumbo-jumbo...
From the Christopher Reeve Foundation:
Autonomic dysreflexia indicates over-activity of the autonomic nervous system – the part of the system that controls things you don't have to think about, such as heart rate, breathing and digestion.
A noxious stimulus (would be painful if one could sense it) below the injury level sends nerve impulses to the spinal cord; they travel upward until blocked at the level of injury.
Since these impulses cannot reach the brain, the body doesn't respond as it would normally. A reflex is activated that increases activity of the sympathetic portion of the autonomic nervous system. This results in a narrowing of the blood vessels, which causes a rise in blood pressure.
Nerve receptors in the heart and blood vessels detect this rise in blood pressure and send a message to the brain. The brain then sends a message to the heart, causing the heartbeat to slow down and the blood vessels above the level of injury to dilate. However, since the brain is not able to send messages below the level of injury, blood pressure cannot be regulated. The body is confused and can't sort out the situation.
Stop skipping, lazy!
Alright, my turn. I can’t feel from my chest down right? So the way that my body responds to a stimulant (usually pain) is by making my sympathetic nervous system ‘freak out’. When this happens, I get a plethora of weird and uncomfortable symptoms; goose bumps down my arms, flushed neck and face, increase in blood pressure (the dangerous symptom), headaches (ranging from slight hangover all the way to bare-knuckle boxing match with the Italian Stallion), random sweating, and the chills. Some are just minor irritations and some can be life threatening. Usually the minor symptoms just mean that I have to go to the bathroom or that I have an uncomfortable wrinkle in my clothes or a wedgie or something that can be fixed easily.
The danger with AD is that if it doesn’t get fixed right away, the symptoms do nothing but escalate. The blood pressure spike is the main danger because it can cause a stroke. Luckily, I’ve never been to that level but the risk is always there.
AD may sound dangerous, which it is, but it is also quite useful. It is my warning system. If I sit on a wrinkle and have no clue then after a while I could develop a pressure sore. If I don’t pee then my bladder could fill up and cause kidney and bladder complications. If my shoes are too tight then it can grow an ingrown toenail. The symptoms are annoying and irritating but when they’re there, I know it’s go time. Time to figure out what it is.
Just by living with the symptoms for a bit, I’ve come to generally know what each symptom means for me.
Everyone is different but here is a bit of my system.
1. If I lean forward and take a deep breath and get the goosebumps down my arm and a cold feeling down my back then I know that I’m gassy (sorry if this is too much info) or I have to go to the bathroom. This also usually triggers a leg spasm which also tells me that something is definitely pissing my body off.
2. If my face feels hot and I can feel my heart beating quicker then that’s usually the first sign that I gotta pee. No big deal.
3. If I have really bad chills (you can usually find me under a heated blanket) then I’m probably just uncomfortable from the temperature or it can be a sign of an infection. It is usually hard to tell if it’s a UTI or anything like that because they’re really rare and I’m almost always cold... but the chills and a increase in random muscle spasms usually mean infection.
4. Big headaches accompanied with quick ‘come-and-go’ goosebumps usually mean a sharp pain. Examples being a scratch from say... a dog climbing onto my lap (thanks Kona), or stubbing my toe or banging my knee on a table.
5. Long lasting little headaches and annoying chills in my arms usually mean a little annoying discomfort. My waist band or socks are too tight. My belt is digging into my belly. I’m sitting or laying on a wrinkle.
6. If I get all these symptoms and my blood pressure shoots up, then immediate action is required. This hasn’t happened to me since I was in the hospital but these are the dangerous ones. It happened when the nurses would help me transfer into bed and I would lay flat on a pressure sore that I had on my tail bone (story for another time). The pain from the sore triggered dangerous blood pressure levels and excruciating headaches that lasted for hours even after the immediate complication was corrected. Miserable times and I am extremely happy that these days are behind me (pun intended).
I have figured out my own little system for knowing what is going on with my body. Everyone is different though. The symptoms can be very different and equally difficult to associate with any one complication. I have learned mine through trial and error and through personal experiences. I hope that this helps anyone that is learning about their body post-injury and needs to know about AD. I also hope that this helps educate everyone around me that hears me say that “I feel like garbage”. If I ever seem distant or distracted then just understand that one of these scenarios is probably happening and I’m trying to figure out which number it is. Thanks for the read!
God Bless!
Skin
I will never forget this fun fact that I learned in anatomy class in high school. One of my teacher’s first anatomy questions; “what is the biggest organ in the body?”. I confidently blurted out “the intestines” thinking that if you laid them out it was like a mile long or something like that. Something that I thought I heard on ‘Pawn Stars’ or some other ridiculous TV show. Bamboozled again.
It was sort of a trick question. It turns out that the skin is an organ and it is by far the biggest in the human body. As a kid, I grew up covered in scrapes and bruises. Poison ivy, falling off my skateboard, sliding into second base during baseball. Later in life, getting tattoos and the occasional sunburn. Life just beating up on my skin. I never questioned how it worked. You just get scrapes and bruises and they heal. I also never really cared. Until I had to.
Being immobile in any sense, really compromises your skin. Be it from old age, bed rest, or paralysis. Skin is supposed to stretch and breathe. One of my least favorite things about being in a wheelchair is the constant feeling of pressure. Always sitting or always leaning against something. Constantly having something on my backside. That is why I love the weightlessness of swimming. It was really the only time that I felt this release.
One thing that I’ve mentioned but never actually hit on was the fact that I had a pretty significant pressure sore in the hospital. I’ve always been really embarrassed about it and I’m not exactly sure why. It wasn’t my fault. When you spend any prolonged time laying in bed, it is important to turn to relieve pressure. You do it without thinking. If you’re sitting on a plane and your ass starts to go numb then you just stand up and shake it out. This is the same reason that you move around subconsciously while you sleep. Well you can probably see how being paralyzed can complicate this.
I spent two weeks in a drug induced coma with a ventilator hooked up with a breathing tube. I had a neck brace with a feeding tube and all kinds of medical tubes and leads entangling me while keeping me alive. This made being turned nearly impossible. So two straight weeks on my back it was. When I was healthy enough to fly to Boston, I was strapped to a tiny gurney on a jet and then I was stuck in traffic in the ambulance driving from Logan International airport. In total, I was flat on a hard gurney for about 9 hours which led to a pressure sore on my tailbone.
Within my first day at the VA hospital I was told that my injury was a complete injury and that I would have substantial paralysis for the rest of my life. Oh and by the way, you have the start of a “wound” on your tailbone. I could barely process all of this news, but I kept on thinking “what a strange word... a wound? Really? Good thing I’m in a hospital... this is a stupid thing to worry about. Now how do I get back to moving my body?”. This thing would end up being the bane of my existence. It hindered everything for a little over a year. A full year of paralysis recovery... just think of that?... Learning how to do everything all over again, meanwhile my body is essentially trying to grow a new and improved booty... I would end up getting surgery from a plastic surgeon after dealing with insane blood pressure spikes and all kinds of crazy dangerous complications from a “wound” on my tailbone. Now my backside looks like a baseball and I am extremely careful and cautious with skin checks because I will NEVER let something like this happen again.
Now I want to hit on being careful with skin and what that entails for me now.
1. It is important to recognize areas that are prone to pressure and avoid prolonged periods sitting or laying on them. When sitting, the rule of thumb is to relieve pressure every 20 minutes for at least 2 minutes. Most power wheelchairs can tilt to a deep recline to move pressure from the booty to the back. I can also do this more discreetly by leaning side to side or forward on my knees. Regardless of how it’s done, pressure relief is a must!
2. My wheelchair cushion needs to be my best friend. I was pressure mapped by my therapists to show where danger spots are on me specifically. My seat cushion is where I am for majority of the day. I have a Roho cushion with a bunch of air cells kept at atmospheric pressure to disperse pressure. The rest of my time is usually spent in bed. The hospital could have provided a special bed but it would be a twin size so I opted for the “go big or go home” route. I bought a king size Sleep Number i10 and it is absolutely worth every penny. The feet and head raise and setting my sleep number as well as the smart bed changing pressures automatically make for a heavy and safe sleep. I turn every 4 hours throughout the night and how I do that is up to me. I can go from flat on my back to either side. I just put a pillow between my knees to avoid “bone on bone” contact from my knees and wear thick socks or prevalon boots to prevent the same with my feet. Truthfully, it may be overkill but like I said... I refuse to get a pressure sore ever again.
3. Protection and prevention! I shower a lot to keep my skin clean and I take Vitamins to promote healthy skin. I make sure to use lotion where I can (plus I try and spoil my tattoos) and practice good hygiene habits. I try to avoid sunburns like the plague and try to be generally aware of anything that may be detrimental to my skin (tight clothes, socks, shoes, loose bed sheet wrinkles, and of course... being stationary for too long).
Some people probably think that I’m being a little paranoid but hey, you didn’t deal with skin issues, need surgery and bed rest or have a baseball looking bum so go take a long walk on a short pier.
I hope that this helped educate anyone about yet another secondary condition that comes with paralysis and spinal cord injury. Stay healthy out there folks and remember to appreciate that giant organ of yours!
God Bless!
Chronic Pain
Ahh yes, pain. Such a cruel irony that accompanies a spinal cord injury. I can’t feel sensation but believe me, I am feeling pain. Neuropathic pain, or nerve pain is quite easily the worst pain that I’ve ever felt. It is worse than what I felt getting shot and worse than changing the tape daily off of my raw surgical scar on my throat. The best part... it is chronic. It is always there... just lurking. Some things make it worse (rainy or cold days) but for the most part, I just live with it. It’s like everything in life, you just get used to it. You have to adapt to it or else you’d go crazy, and believe me, people definitely do. It is extremely hard to live with.
It’s hard to see this in me. I try to live by the motto “don’t be a bitch” so I usually suck it up and put on a brave face. Honestly, admitting that I’m even in pain is pretty tough for me. In the Army, you just take a knee and drink water. Sprain your ankle? Duck tape that bitch and keep walking. Get a deep cut or gash? Well that’s why God invented super glue... Now here I am with invisible pains. Some of the worst pain I’ve ever felt.
So what exactly is nerve pain? Well pain is caused from interplay between chemicals found in the brain and spinal cord. These neurotransmitters send nerve impulses from one cell to the other. When a spinal cord is injured, it causes a critical lack of GABA and other important neurotransmitters. This causes spinal neurons that are responsible for pain sensations to fire much more than normal, thus leading to overactive and chronic pain. In laments terms, as long as my spine is confused, I will be in pain.
So, what kind of pain am I feeling? What does nerve pain feel like? Well, I can easily tell you what I feel. Much like everything else with spinal cord injuries, different people feel different things depending on how they’re injured. I made a beautifully detailed chart to describe what my constant pain feels like.
If there is one thing that I’ve learned from my spinal cord injury it is that nerves are weird. I often ask myself why humans are designed with little strings that control their bodies. Why if one string breaks, I wont be able to move my leg or I feel a constant burning in my foot? Or if another string breaks, I feel random lightning jolts in my knees. Like WTF nerves, figure it out.
On top of all the pain I feel below my injury, I also hurt where I have feeling. Not being able to use the lower part of my body means that I do a lot with my arms and upper body to compensate. My neck and shoulders get a lot of overuse which causes intense muscle tightness, joint issues and posture issues. I have a massage therapist that comes to my house biweekly and she does range of motion, stretching, deep tissue massages and muscle massages. Getting this therapy has actually made a huge difference in my recovery. Self love is extremely important and taking time for yourself to get your muscles worked on is very crucial. I can’t imagine how my body would feel if I didn’t take this time and have such a great massage therapist.
But truthfully the best thing I found when dealing with nerve pain is to just stay distracted. If I sit there and dwell on this pain that I can’t see then it seems like it just gets worse and worse. It’s almost like inception, if I plant that seed then it’s all I can feel. If I do anything throughout the day to keep me distracted then I’m usually good. Anything to break up the monotony. Whether it’s typing on my iPad, playing video games, reading, boardgames and other hobbies then I’m fine. If I sit around all day watching TV and don’t move around a lot that I usually feel like I’m in a lot of pain, especially by the end of the day. If I sit there and think wow my hands hurt, then guess what... my hands are going to hurt and hurt and hurt, and I have no one to blame but myself. It’s simply better to just not dwell on it.
Feeling constant pain often leads to something called SCI burn out or burn-out in general. It’s similar to how you feel after working a full day. Imagine how you feel after sitting in a classroom all day or sitting on the plane for a cross-country flight. You’re usually sore and burned out right? This actually leads to a pretty decent mental struggle for people in wheelchairs and I do experience it. I feel fatigued and tired for no reason which makes me feel like I accomplished a full day’s work. In reality, all I’ve done is survived another day of nerve pain and spinal cord injury complications. Has my job become living? Is my day-to-day living such a task that it causes me to be burned out by the end of the day? It is sad but true. It is hard to work yourself out of this cycle and it is something I am trying to do when I figure out what I want to do with school and work. Keeping this blog and my little public speaking gigs has maintained a significant boost in my mental morale. Having purpose is extremely important and I am always pushing to see what my next goal will be. It is easy to fall into this trap but very important that you stay out of it. Mental health is no joke especially when chronic pain is playing such a big factor in it. The only advice that I can give on this is to seek guidance from a mental health specialist because there is absolutely no shame in it. I have made huge mental leaps and bounds just by simply talking to someone. With mental health comes physical health, always keep that in mind. What has helped me the most is my way of maintaining goal orientation and never settling.
If you are experiencing nerve pain or any pain really, I’m posting the link to the Christopher Reeve foundation. They list out a bunch of different ways to combat chronic pain. A lot of it is good advice and I have used a few of the techniques listed and they work well.
Thank you for reading today’s blog post about pain. I hope that my experiences have helped educate anyone that was curious about secondary conditions from SCI. There is always more than what you see on the surface.
SCI Awareness Day
So, what are your first thoughts when you see someone rolling around in a wheelchair? I used to think “aw man, he/she can’t walk... that sucks” and then go on with my day. There is sooooo much more than that and I will explain some of it right after I ‘aware’ your brains with some facts.
- there are roughly 17,000 new spinal cord injuries per year in the U.S.
- there are roughly 280,000 people in the U.S. living with an SCI. (But I’m your favorite right?)
- 80% of the injured are men. (Isn’t there a saying that women live longer or something?)
- vehicle crashes are the most common cause, followed by falls, acts of violence, & sports injuries.
- SCI sucks and I wouldn’t wish it on my worst enemy.
Feeling smarter now? First off, no two spinal cord injuries are the same. Some can feel but can’t move, others can move but can’t feel. Some have neither and can’t move or feel (me). Generally the amount of loss of function depends on where your spine was injured. My injury was higher up in my cervical spine which is why my hands, chest, arms and core were effected. This is all of the visible complications that you see. These are all just the surface level issues.
You probably don’t look at me in my wheelchair and think about the increased risk of pressure sores that I have now or that I have a much higher risk of pneumonia because my diaphragm is so weak (or at least I hope that these aren’t your first thoughts). I bet you don’t see me and think about how my blood pressure is substantially lower because my muscles can’t help push it back up to my heart or that if I sit on a wrinkle for too long then my blood pressure can shoot through the roof and put me at risk for a stroke. I hope that you don’t look me and ask yourself “how does this m’fer go to the bathroom...?” because I can tell you it’s a process and it ain’t always pretty. I’m sure that you don’t look at me and see that I’ve had so many bladder infections that I’ve started growing immune to antibiotics which can lead to sepsis and can be fatal. You see me happily rolling around but you don’t see the mountain of medication that I take every morning and every night. You may notice that my feet are in weird positions sometimes but you don’t know that I had a painful muscle spasm and I’m too weak to reach my own feet to fix them. I also don’t expect you to think like this. Why should you trouble yourself with these facts?
I feel like there are two scenarios that I want to hit on. First, that there is a stigma around spinal cord injuries and second, that there are people that truly just don’t care, and that’s honestly okay. Ignorance is bliss and if this doesn’t matter to you then more power to ya 🙌🏻. I definitely fell into the second category before I had to experience it the hard way.
How does seeing or being around someone in a wheelchair effect me? It never did. I never treated or thought of them as different as I’m sure most of you never have either. I just never needed to care about all of the behind the scenes stuff that follows this kind of injury. Well I hope that this small tidbit of info will help you see the other side of paralysis. I hope that I was real enough and that you can see some of the not-so-pretty complications that are unfortunately part of the paralysis-pact. Let’s be more aware and break any stigmas regarding paralysis!
God Bless!
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