Guest Blog: My Neurogenic Life

By Antonia Sinibaldi,
SPINALpedia Ambassador

In the last year, my life has changed tremendously. I finally discovered I’m part of a huge spinal cord injury community. Both in New York and New Jersey, as well as online. I thank Tiffiny and the rest of the SPINALpedia squad for letting me write. I’ve been paralyzed almost all my life and there are not that many pediatric-trach vent patients due to spinal cord injury. So far I’ve met three other people that have been paralyzed under the age of 10 that are either on a vent or once on a vent. One thing I wish someone informed us is what a neurogenic bladder is. I am sure that most people are aware, but if not, I’ll say it again and again. I might as well tattoo it to my body. Just joking! I am way too sensitive to get a tattoo.

My bladder started off as the first type of neurogenic bladder when it just empties. I did have control of it for the first 4 to 7 years. Not full control, but I could tell when I was leaking. Then, around twelve years old I got overactive bladder. I would get UTIs monthly. Now is not as frequent, but I still get them. I took so many cranberry capsules starting from the age of 13 to present, nothing worked. The urologist at the time stopped contacting us from a New York City hospital. Then I turned 16, and started going to Kessler. Now I have a neurogenic bladder that makes me need Botox every three months and for the last four years of my life I have a suprapubic catheter. We had to learn the hard way, and by “we” I mean my mom and I. My main caretaker and confidant.

My mom and I have a very close and unique relationship. If you guys read my book, I am also sensitive to caffeine, so I don’t drink coffee or soda, I drink certain teas specifically for the bladder and kidneys. All of this pain leads to severe depression. After 20 years it has become a lot of BLAH BLAH BLAH. I can’t believe my body keeps changing. For a while the depression with the help of God it has gotten better. I was on antidepressants and now I use CBD, but it is still not enough. I am falling back in my old ways, the depression came back because of the pain. The spasticity is as if it was when I was 9 and 10 years old. Most of my spasticity is cause by …. MY BLADDER! It is a disaster. I thank Spinalpedia for putting up with me, but I ask all of you readers is there anything I can do for neurogenic bladder.

I live in New Jersey and a specialist in my area keeps telling me that I am a very dangerous case. There is an obscene amount of information on the internet, yet it seems like nobody knows what to do with me. I am currently 22 and I keep getting bounced around from one doctor to another doctor like crazy. My life is not as bad as it feels. Readers count your blessings because we are all blessed in our own way. I complain all the time and I make mistakes all the time, but I am trying my hardest to understand what is going on with my body. Spinalpedia is accurate and most of the members who write whether is short or long writings, we know our bodies the most.

That’s why we need the spinal cord injury community to come together, to speak, to fight, to advocate, to study, etc, etc. There is more I want to say, but as for the future. Right now I need someone to tell me what to do for this neurogenic bladder. The autonomic dysreflexia is getting out of control, any updates??? And I am just curious whoever reads this if this happens to you? Has anyone spasmed for an hour? and if you had, how do you control it? Another question for my fellow vent-trach posse does the spasticity affect your breathing? That’s the reason why weaning has been difficult before the pacemaker and after the pacemaker. All the doctors look at me as if I am speaking a foreign language. These are just some of the issues that make the depression worse.

Only my mother and a few of my friends understand. God has been good to me and He has been good to all of us. Feel free to contact me on social media or through my work email which is listed on social media. I am a singer who is on a vent. I love singing and performing always have. Singing is what helps me heal and express, but I also always been a science geek and highly interested in science and the medical field. For which, one of my goals is to be a research doctor. I would love that someone to let me into research. Thank you guys for reading this, I hope I helped you as you are helping me.

SCI Superstar: Kris Cordero

Finding your place in the world after a spinal cord injury can seem like an impossible task. For Kris Cordero, 36, this was certainly the case. He felt as if his identity had been stripped away and lapsed into a full-blown depression for years. This however was the impetus for his next chapter in life. It wasn’t easy discovering this path however for this former high school athlete.

All it took was one interaction and Kris knew instantly what his new role in life was to be – he wanted to become a mental health therapist. But it did not happen overnight. He had to put in years of schooling and his perseverance is sure to inspire others with spinal cord injuries, showing how you can change aspects of yourself after an SCI in order to survive.

Why He’s Fearless

Growing up in Oklahoma, Kris loved wrestling. Unfortunately, he injured his spinal cord at the C5-6 level during a wrestling match in a tournament final. He was 16 at the time. “I was completely numb for three years and incredibly depressed for eight years after my injury,” he says. “I had a lot of anger and resentment the first year of my injury, even though I tried to not let it show. I struggled with suicidal ideation regularly, just trying to find my purpose.”

After high school, he attended rehabilitation at Craig hospital in Colorado., It was there he was able to discover his life’s purpose. “I decided I wanted to be a therapist while I was inpatient at Craig. A nurse asked me to talk with another patient who wasn’t doing very well. Through our small conversation I was able to restore hope, and he started coming out of his room and working through rehab. I was hooked, this is what I wanted to do with my life. Having this passion helped me to stay busy and focus on it, rather than idle time.”

And that is when Kris set to work on his academic career, which was a full 180 degree difference from his previous life. “I had to switch completely from being an athlete to academics in order to become a therapist.” Kris enrolled at Oklahoma Wesleyan University, and graduated with his Bachelor’s of Science in Psychology. Once he received his degree in 2008, he moved to Colorado for five years where he started his Master’s of Science in Professional Counseling at Grand Canyon University.

After moving back to Oklahoma, he continued his studies and graduated. He is now one examination away from becoming a licensed professional counselor. One day Kris would love to receive his PhD in clinical counseling as well. As for what he is doing each day, he works at a local community health facility providing therapy for 7 to 12 people each day. “I primarily work with adults, and anyone who is asking for help and presents to the clinic . I have a group of people that I regularly provide therapy to as well.”

What’s Next?

The topic of forgiveness has been at the forefront of Kris’s practice as well, knowing how toxic not forgiving someone can be after a SCI. He is working on a book as well. “Forgiveness can be a tricky subject, especially if it took place from the hands of another person. You have to be intentional; you have to want to become the best person of yourself, and living with unforgiveness can cause a lot of other issues,” he says.

“Manifestations, in my opinion, of living with unforgiveness can cause gastrointestinal issues. If you’re living paralyzed, you know that this can be a train wreck all by itself. You must be intentional about wanting to get better, find a therapist, find a regular person to talk to. If it gets 1% better, that’s better than no percent, and simply doing nothing means that it will not get better.”

If you’re paralyzed and struggling to forgive after your injury, Kris recommends journaling. “You have to simply start by trying and if you’re not ready to work with someone, start by journaling. I believe this is a good process to start expressing what has been held in for so long. Can’t find a therapist, find a close friend or make one that you can trust talking about things. Not trying or doing anything about it basically means it will not get better. It’s a process.”

Confronting the topic of forgiveness himself, Kris plans on meeting with the wrestler that broke his neck in a few weeks. “It’s set to take place at the arena we were wrestling in when the accident occurred,” he says, and it will be filmed by local TV.

If you’re struggling with forgiveness after your spinal cord injury and want help, contact Kris at kdcordero@gmail.com.

Follow Kris on Social Media

– Twitter: _kdcordero

– Instagram: _kdcordero

– Facebook: /KrisCordero