So I've come to the decision to stop doing video blogs for the time being. I'm just to busy with school work, my gliders, and my hedgehog on top of getting this surgery done and trying to learn to drive. I will start up again when things settle down. I'm debating on taking the video blogs down or just renaming them. I'm not saying that there won't be videos added to my YouTube but for now no blogs. I'm sorry guys!
My Indwelling Foley Story
As everyone knows I've been dealing with bladder issues but what everyone doesn't know exactly how bad it's been. So I'm going to start from the beginning but not go into great detail until the end. When my accident happened I was cathing or technically being cathed every two to four hours a day. It took about forty five minutes to cath me because of my spasticity. I hated it! It felt like just about the time I got done with cathing and settled down I had to do it all over again. So I started to use a foley full time which gave me the independence I wanted but what I didn't know was that the constant foley use was destroying my urethra.
The urethra is the tube that carries the urine from the bladder to its exit point. It's a very small tube but when you use a foley over a long period of time the foley tube starts to stretch it and the urethra starts to loose the ability to shrink too. So eventually you'll have to move up in size of the catheter because you'll start to having bladder leakage which has a lot of consequences.
I'm here to share with you the consequences I'm facing because of my prolonged use of the Foley catheter. My urethra had become so large that the male doctor could stick his hole index finger into my urethra. The normal urethra should only be the size of a 8 fr catheter. I asked if there was a catheter size that I could go to in order to stop the leakage to protect my skin. There's 6 fr to 40 fr and there's nothing that is as large as my urethra has stretched.
The leaking means that I smell like pee all the time. My clothes are always nasty. My chair gets wets when I leak which will cause uncovered damage to my chair over time. I don't want to leave my house because of the urine smell. I don't want to be around people because they can smell horrible.
I'm starting to feel the depression that I've been fighting since my injury happened starting to take over my mind once again. I'm fighting a war with my own mind. I have to keep reminding myself that in a few weeks it will be over and this won't be happening anymore. I'll be able to go out and have my life again. I'll be able to learn to drive and do everything else that this leaking has taken from me.
I have to keep fighting this war.
July 5, 2017
Wednesday I had a little bit of a scare, but it was also funny now looking back on it. I was coming down the ramp after dinner by myself when the bottom of the ramp gave way with me. The chair and I both went down face first in the dirt. If anyone knows my will chair it is about 300 pounds by it self and it was on top of me. I was screaming for Jessica when she finally came out about two minutes later. Two minutes might not seem like a long time for everyone but when you are face first in the dirt with a gigantic power wheelchair on top of me it seems like forever. Of course, I am crying because I am hurting really bad.
Jessica had washed the porch and ramp off that morning to clean the cake off for the birthday party previous day. It had washed out the bottom of the ramp and I could not get up it. So I asked Lil Mike to just put another board now so I can get up and down the ramp. He ended up having to lift the bottom of the ramp up and mess with some of the boards underneath before getting it to say it right. I guess it weakens the other boards when he lifted them up.
After a few moments of making sure I was okay we got me up and back in my chair. We checked out my body and even though I was covered in a bunch of dirt the only ones I had was between my pinky toes and on the bottom of one of my other toes on my left foot. I am very grateful that it did not hurt me anymore than it did. The next day we got the police jury to come and fix the ramp right so that it would not happen again.
Urostomy vs Mitrofanoff
A urostomy is an opening in the belly (abdominal wall) that’s made during surgery. It re-directs urine away from a bladder that’s diseased or not working as it should. The bladder is either bypassed or removed. (Surgery to remove the bladder is called a cystectomy.) After this surgery, urine is passed out of the body through an opening on the belly called a stoma. A Wound Ostomy Continence nurse (WOCN or WOC nurse) or the surgeon will figure out the best location for your stoma. (A WOC nurse is a specially trained registered nurse who takes care of and teaches ostomy patients. This person may also be called an ostomy nurse.)
The stoma will look pink to red and will be moist and shiny. The shape will be round to oval, and it will shrink over time after surgery. Some stomas may stick out a little, while others are flush with the skin.
You won’t be able to start or stop urine coming out through the stoma, so you might need a pouch to collect the urine as it comes out. The stoma has no nerve endings, so it’s not a source of pain or discomfort. It is just a change in the way urine comes out of your body.
A urostomy is not a disease, but a change in the way your body works. It surgically changes the way urine comes out of your body.
This surgery avoids the need to wear a urostomy pouch over the stoma to collect the urine. Instead a small stoma is created and a catheter is passed into a reservoir (or the natural bladder) to drain the urine. The person having the operation must be highly motivated to accept this procedure. Good dexterity is required and a firm commitment to take care of the reservoir. As there is no other way of draining the reservoir a catheter must be passed at regular intervals, usually four hourly.
Paul Mitrofanoff developed a continent urinary stoma mechanism in 1980. A urinary reservoir is fashioned from bowel, or the person’s own bladder may be used as the reservoir. A channel is created from the appendix, ureter or ileum. The diversion is continent because of the valve arrangement, which prevents urinary leakage. The channel connects the reservoir to the abdominal surface. A small catheterisable stoma is placed in a cosmetically suitable site. It is important that the person is able to see the stoma in order to insert the catheter easily.
You Before Me
I just finished watching the movie You Before Me on my Amazon prime membership. I have honestly been dreading watching this movie because I knew what the ending held therefore it made me angry that he chose not to live. I had made up my mind I would never watch it because it gives everyone that is not in a wheelchair the sense that we should not be able to live. I have honestly changed my mind.
There was laughs and there were times I wanted to cry but all in all the movie was fantastic. It gives everyone a small peak inside a quadriplegic's life. I may not be a complete quadriplegic like him but I was like him for a while. I was unable to move anything from the neck down for a few weeks until I started regaining some of my movement back. I struggled with the same debate whether I wanted to live unable to move anything from the neck down or die and be free. To be completely honest with all of you here I still continue to struggle with that, I have days where I want to do nothing more than curl up and die so I will be able to lose this dead body and be able to do things that I used too. I also have my great days where I am grateful to be alive and I want to be there for other people that is in similar situations. I have been all over the United States since my injury and I want to continue to be able to go places even around the world despite my disability.
I can tell you my decision would have been the same thing if I was unable to move anything from the neck down. I believe that is no way to live with hardly any quality of life. I don't speak for all quadriplegic but in my case I would not want to live that way. I am so very grateful for the movement I have gotten and I am continuing to receive from God. I hope one that I'm able to fully recover before I get my wings.
She wanted so bad to save him and I totally get that because I would want someone to try their best and save me if it was me. She wanted to show him that she could give him a very happy life. She honestly had no idea what was going on inside of his head because those same thoughts that were running through his run through my mind constantly. He was only two years into his accident while I am going on nine years. I can no longer remember what it feels like to run my toes through the sand, I cannot remember what it's like to get up on my own and get out of bed on my own and have a normal day anymore. I get to sit here and wonder what my life would've been like if my accident never happened. I get to remember what it was like before and know that I will never have that again. All I have to hang onto is the smiles and the laughs that I've had along the way and the possibility of having a cure for this paralysis in my lifetime so that I am able to do those things again.
If you have a loved one that has a spinal cord injury it want a small glimpse into what they go through on a daily basis I recommend you watch this movie. If you read my blog and have never seen or dealt with anyone with a spinal cord injury I also recommend you watch this movie. It gives you a little insight as to everything that you're taking for granted whether you mean to are not. I took everything I had for granted and I have to watch everyone around me take what they have for granted. Live every day like it's your last or at least live everyday like it's your last to be able to move your own body or take care of your own self. You never know when it will end.
Paralyzed from the neck down after an ATV rollover at 14, April Otwell is beating the odds the doctors gave her. She's a blogger, fantasy writer, college student, sugar glider guardian and spinal cord injury survivor. She's even writing her first fiction novel!