My best friend and I went out to dinner one night to Brio Tuscan Grille. We were enjoying a glass of wine, great food and even better conversation. All of a sudden, I started cold sweating and getting light headed with no idea why this was going on. I took a turn for the worse & fast. By the time I told my friend to ask for the check because we had to leave to go back home, it became hard to breathe. We rushed to the car and my friend drove me home. I told her, "Whatever you do, do not let me close my eyes. Keep me in conversation because I feel like I am about to pass out." Luckily, we were a short 8 minute drive to my house but now I started to see black and white spots, started losing my vision, I felt like my head was going to explode, still sweating but now profusely yet had goosebumps as if I was cold. I could feel every heartbeat, each one slower than the last. My friend dropped me off and now I was in the care of my parents. By the time I got into bed, I had wet myself. Pee. Urine. Piss. The culprit. My catheter was kinked and I was not able to empty out my bladder. I was able to verbalize to my mom to take the catheter out of me (so the rest of the pee could be forced out of my bladder). Then, everything went dark. I blacked out. It wasn't for long but it sure was scary. The moment my bladder emptied out completely I started to come back. Still with an exploding headache and still with an inability to breathe normally. What the hell just happened?! AD just happened.
Most people think that Spinal Cord Injury is simply the inability to walk. They couldn't be more wrong. That is just the surface of a long list of problems. One of those problems I face is Autonomic Dysreflexia (AD). If you want to know the medical definition, I encourage you to look it up and do some research. Especially if you fall in that category or have a loved one that does. I want to tell you what it means to me and what happens to me when I experience AD. I am considered a T2 (Thoracic) Level Incomplete Paraplegic. AD affects me because I have an injury above the T6 level. Now, AD does not affect every person who is injured at that level but for those of us it does affect, it could be deadly. AD is primarily my body's response to any kind of discomfort below my level of spinal cord injury. It is my body's way of yelling at me, "JESSIKA, YOU ARE IN MAJOR PAIN!!! ABORT! ABORT!" I have no sensation below my chest so I guess it's an okay way of being told something's wrong. But good Lord, couldn't there be a more subtle way? I suffer from AD because of anything from my bladder not emptying out to being constipated to a shoe being on too tight to an ingrown toenail. It can be a number of things. The important thing to remember is I have to ACT FAST. Like that night out with my best friend, my episode from start to finish was about 20 minutes, if we hadn't left the restaurant at that moment, I could have suffered a seizure, stroke or worse, died.
Now, I say primarily pain/discomfort causes AD because guess what and here's the kicker...I get AD during sex! Lord, why do you hate me so much?! During sex? Can I not enjoy anything?? Although I have loss of sensation below my chest level, it's funny how some things still work (wink wink). When Rey (my fiance) and I have sex, I get the same high blood pressure, low heart rate, hives, goosebumps, cold sweats and it gets hard to breathe. At what point do I tell Rey to stop? Do I tell him to stop or enjoy it til I black out? He knows me well enough at this point that he knows when to stop on his own. I can see the headliner now, "WOMAN: Dies having sex, didn't want to stop." Babe, if that ever happens, make sure that's the headline.
I had a 48 hour episode after my very 1st time SCUBA Diving in the ocean. I came out of the water screaming, people on the shore could hear me and we were far. Luckily, my dive buddies came to my rescue and brought me to shore. I never felt pain so bad in my life. You know when you hold your breath for as long as you can and you start to feel pressure in your head until you can't hold it anymore and you give up and breath again. That's the pressure I felt for 48 hours. That was Autonomic Dysreflexia.
I've been to the Emergency Room 4 times for Autonomic Dysreflexia. Ironically, it's not a condition all doctors know about. I even had one doctor tell me, "My job here is to make sure you are alive and you are alive, go home." I was in excruciating pain around my groin and it was causing me to black out. After blacking out, if I didn't get relief, I could potentially die. If it sounds like I am exaggerating, I assure you I am not. I tried to explain AD to another ER doctor and his response was "How do you know so much about this? Did you Google it?" In my head I wanted to say "No (insert expletive here)!" But this hot-tempered Colombian stayed calm and told him, "I don't need to google something that happens to me almost every day, I live it!" It may have been with attitude but this guy made me feel like I was crazy and didn't know what I was talking about. I gave up on going to the ER after that.
The only thing I can do now is try to fix the problem myself and do it fast. I get AD every time I have to poop. I get AD every day I tie my shoelace on too tight. I get AD every time I get a UTI, which when using a catheter happens often. It is safe to say I get AD on a daily basis. So I came up with the 4 P's of AD. It's kind of my own checklist to figure out what is wrong with my body. I check (1P) Pee first. Is something wrong with my catheter, do I have a UTI? If it's not that, I move on to (2P) Poop. Have I gone to the bathroom lately? Am I constipated? If it's not that then lastly I move to (3) Pain. Do I have a cut, bruise, pressure sore or ankle twisted? Have I changed my position lately? The one that falls in the "Other" Category is (4P) Pleasure. Sex. Enough said. No matter what the cause, I have to act quickly to stop the discomfort immediately. I sit myself up, wait until I can breathe back to normal and my blood pressure is back to normal. This is AD.
-Guest Blogger: Jessika Kattah “It’s that Wheel kind of Love”