The truth shall set you free
It’s been quite a while since my first post and I’ve wanted to start this next one for months, but I’ve been going through some stuff. I usually try to keep my emotions and feelings bottled up and don’t particularly like to share my struggles with anyone. Ever since I got hurt I’ve felt this need to protect everyone from what I’m going through. As I write this I tear up because I’ve spent the past 22 years trying to make everyone ‘OK’ with my situation, and it’s been exhausting. I’ve wanted so bad for things to be ‘normal’ and for people to see me as the same person I was before my accident. The problem with this, is that I’m not the same person. Not anywhere close.
This post is my truth – the ugly and graphic truth of my new normal. I will warn you, I’m probably going to write some stuff that might gross you out. So, if you don’t think you can handle that, you might want to stop reading now.
As I’m about to turn 40 and recently marked the 22nd anniversary of my accident, I’ve been doing a lot of soul searching. The past few months have been rough – an emotional roller coaster that seems never-ending. When I first got hurt I had no idea what my future would look like, but I had this crazily rosy outlook, where I thought all would be ok – I’d just sit more than normal. What’s the big deal, right?! God, I wish that were the case. What I didn’t realize is that when you sever or damage your spinal cord, not only do you lose the ability to walk or feel anything below your injury level, you lose the ability to control your bladder and your bowel. Some people also have debilitating back/neck pain and others can have leg spasms that will knock them right out of their chair. Thankfully, I have not had to deal with any pain issues (until recently, and that is my shoulder, which is now due to being in a chair) and I’ve never had bad spasms until recently. But let’s get back to that bladder and bowel thing. Take a moment to think about that – what it would be like to not have control over those two things. Sounds bad, doesn’t it? Well, it is, and your imagination can’t even get close to understanding just how shitty (pun intended) that part can be.
Let’s start with the bladder first. Every spinal cord injury experience is different but for the most part, we all must use a catheter to go to the bathroom. When you’re in the rehab hospital after your injury, the nurses handle this for you. They come in every 2 to 3 hours and you lay in bed, with your legs spread open, while someone does this long procedure where they glove up, wipe you down with some red crap, put the catheter in, drain you, measure it, and then clean you up. At first, this is embarrassing, but as you get used to it you lose all sense of privacy, and since you can’t feel down there anymore you almost don’t give a crap who sees it! As you progress in your rehab therapy, you eventually learn how to do this yourself. For men, this is not so hard since they should be able to view the hole (urethra or whatever) easily. For women, ours is more of a blind procedure where we use our fingers to figure out where the hole is, and it’s freakin’ hard to find!
Ok, so we’ve learned to cath ourselves. Woohoo! Oh but wait, then comes those pesky things called bladder infections. See, now you’re introducing a foreign object into your body that can bring in bacteria. The problem with bladder infections in people with spinal cord injuries is that we don’t know we have one until it’s full blown, and we’re sick as a dog. Others who can feel get a burning sensation when they pee, and then they go to the doctor, and get on antibiotics before it gets worse. But since I can’t feel from the waist down, I don’t know I have an infection until my pee starts looking cloudy, it smells, I’m peeing every hour, and I get a fever. I’ve had about 3 to 4 bladder infections a year in the past 22 years, and when I get one, I’m down for the count for a good 3 to 5 days. My risk of getting bladder infections is made even higher because my insurance company refuses to pay for my catheters, because they are only used once, and then disposed. Insurance will only pay for durable medical equipment, until I meet my deductible. The good news is that I’m one of the lucky few with SCI who has never had a kidney infection. And sadly, kidney failure is one of the main causes of death among people with spinal cord injuries. The others are pulmonary embolisms (blood clots that go into your lungs and eventually your heart, of which I have already had) and infections from a sore or wound, particularly pressure sores that can develop on your arse if you don’t use a proper cushion.
When I first got hurt my bladder did a pretty decent job of holding and I’d rarely have accidents –
mostly when I’d drink alcohol. Unfortunately, over the years my bladder has deteriorated to where it will hold very little and I have accidents about 2 to 3 times a day. See, I don’t buy underwear anymore – I have no use for it. I’m helping Target make a ton of money off my purchase of their adult diapers. And now my life literally revolves around my bladder. I can’t go to other people’s houses if I can’t get into their bathroom – and there’s about a 95% likelihood that their bathroom doors will be too narrow. Riding in other people’s cars means I have to bring along a bed pad to put down, just in case. My mattress has a protective pad and then I have another bed pad on that, and then I also have to wear a diaper to bed. And still, I can somehow soak everything. I can’t ever wear anything like jean more than once, because I’ve probably peed on them. I also don’t wear pants or jeans very often because of the amount of work it takes to pull them down, or take them off if I’ve had an accident, and to pull them back on. That’s why you will almost always see me wearing a dress. It makes it much easier to change my diaper!
Wow, I’m almost 40 years old and I’m writing about changing my own diapers. If you want to know why I don’t want to have kids, it’s because I don’t need to be changing 2 people’s diapers!
If I’m stupid and forget to put on a diaper, you can often find pee trails in my house because if I forget to go to the bathroom every 1 to 2 hours then I’ll pee on myself. I sometimes have an idea of when that’s coming – my right foot may spasm a bit to notify me, but usually that notification is that I’m peeing RIGHT NOW and I’m too late. Thanks for the heads up! *eye roll* Daily I take pills to help my bladder hold – and by hold, what I mean is that it tries to keep my bladder from spasming and causing me to pee on myself. I have what is called an overactive neurogenic bladder and my bladder will spasm when there is very little urine accumulated. The insurance that I have now will not pay for my bladder pills, so I have an amazing urologist that gives me samples for free. And sadly, the pills aren’t working very well anymore.
I’ve also received Botox injections in my bladder, which helps to paralyze the bladder so that it won’t spasm. The injections are supposed to work for about 8 to 9 months on a typical patient. Of course, I’m not typical. The injections only last about 2 to 3 months for me, using the highest dosage allowed, and that’s if it’s done properly. The first time I had the injections I was put under anesthesia and because they use a long scope and needle that goes up your urethra, and I guess that’s supposed to hurt most people. It was actually kind of a nightmare because the nurse was having a problem finding a vein to put in my IV, and I almost fainted because she kept digging, and I HATE needles! Then they gave me this nice bracelet that made me feel oh so special! Insurance will no
longer pay for the procedure to be done this way, which is fine by me. Now it’s done in the doctor’s office and takes about 15 minutes. I guess insurance finally figured out that most paraplegics can’t feel down there anyway, so there’s no need for the anesthesia!! Ha! Anyway, after the procedure there is a lot of cramping and bleeding the rest of the day, but then about a week or 2 later you start to see the effects. And OMG, it almost feels like you’re a whole person again. A bona fide normal, non-peeing on yourself person! And then in a couple of months that goes away and your back to being a constant pee factory.
I haven’t had my Botox since last July, and I don’t think my doctor did a good job because it never really worked. Well, either she didn’t do a good job, or my body has stopped responding. Fingers crossed it’s the former. I haven’t received the Botox since then because I’m not working and I’m on insurance through the exchange and I have a $7K deductible. The procedure costs $2600 out of pocket, and I’m waiting until closer to my wedding to have it done, so that I don’t have to pay for it twice. And no, this is not me asking for money – my mom is going to help me pay for it.
So, THIS is my reality, and that’s just one part of it. We won’t even get into the details of my sex life, but let me just say, that I haven’t had an orgasm in OVER 22 YEARS!!!!!!! Can you imagine? Anyways, let’s move on to my most favorite topic in the world – poop! *I’m being sarcastic* When you become a quad or a paraplegic you lose all control over your bowels and have to learn a new way of getting your body to go – called a ‘bowel program’. I’m sure some people don’t have as many problems as me but I’m lucky if I go once a week, and it usually requires me to drink alcohol to induce it. I know, this is such a gross topic, but I’m not holding anything back. Sorry!
When I was in the hospital they taught me to use enemas and suppositories and told me to drink a ton of water and take fiber supplements. But for someone that pees on themselves constantly, drinking more water is NOT helpful, and taking fiber supplements does nothing for me. I’ve taken so much fiber and Miralax that I’ve ended up in the emergency room TWICE! It’s a real fun experience having an enema in the ER because they stick a hose up your butt and clean everything out. *more sarcasm* So my bowel program is non-existent because it doesn’t work, and I’m literally almost always full of shit!
My bowel program is alcohol – it’s the only thing that works for me. But we haven’t gotten to the best part about not being able to control your bowels, and that’s the accidents. Oh yes, shitting your paints. Did you ever see that K-mart commercial about shipping your pants? If you haven’t, take a moment and enjoy some hilarity:
Wasn’t that a nice change from this horribly disgusting blog post?! I wish I could say that shitting your pants was as funny as this, but it’s not, and it happens to pretty much everyone who has a spinal cord injury. For me, I would say it happens between 4 and 5 times a year. That doesn’t seem like much, but when was the last time you crapped on yourself? Those are my really bad days, where I choose the comfort of my bed, and cuddles with my pup.
I didn’t write this blog to make you feel sorry for me or to throw a pity party. I wrote it because so many people see me and probably think that being in a wheelchair must suck, but that sitting all the time isn’t the worst thing in the world. And they’re right, sitting all the time isn’t the worst thing in the world. It’s dealing with ALL the other things that come along with being in a chair. And well, it’s not the worst thing in the world, but sometimes it feels like it. I hear people tell me all the time ‘Oh, you’re such an inspiration’. That’s nice, but they see only what I want them to see – me in public putting on my happy face so that everyone can feel comfortable around me. What they don’t know is, I’m probably sitting in my own pee at that moment, wanting so bad just to get home and change. But if I ran home to change every time I had an accident, I’d never get anything done.
I always feel like if I don’t go out of my way to be happy and upbeat to strangers or even my friends and family, then I’m letting everyone down, and that they’ll think I’m some miserable person who can’t deal with life. Well guess what?! Sometimes, I really can’t deal with life, and I have to shut myself away from the world and regroup. Does that make me weak? I don’t care…anymore. I guess that is what I’m learning after 22 years. I’m going to be me and not someone who pretends like they’ve got it all together.
