So, here we go. I'm not going to say I've returned to the land of the living yet, but I will say every damn part of my life can be described by a song by the 1975 (have I told y'all to listen to them yet? Yeah, I feel another tattoo coming on. Anyway..)
I'll keep this as brief but as pointed as humanly possible, because I want this one to mean something; not as if my other blogs don't, but when I tell you I have gone through the biggest mental, physical and emotional changes within a 4 week period, I am not lying.
June 2nd - bladder surgery. No problem. June 3rd - ER visit because my stomach has shut down. I tell next to no one, because unlike heeding advice from my previous blog, I'm embarrassed as hell. We assume it shut down due to the anesthesia from my bladder surgery - cool; I don't get better.
June 8th - my husband is out of town and I am on the struggle bus. My dad, my best friend in the entire world, is up to assist me. Before I say anything next, let me say that I was always okay with having an ostomy bag. Yeah, I struggle with confidence issues because of it from time to time, but pre-surgery and post-surgery, no part of me was not okay with not having the bag. I understand this is a battle for many and I'm thankful I did not have to go through the mental gymnastics of grappling with a shit bag for the rest of my life.
No part of me ever thought I'd get a G/J (gastro-jejunal) tube, and furthermore, if I had to get one, no part of me was okay with it. That's where I draw the line, that's where the confidence wears off.
As we report together to my colorectal surgeon's office on June 8th for my emergency appointment, I barely listened as he told me to report to the emergency room immediately and was casually told it was time for G/J tube; there was no other option. "Say what?" I thought. He told me, but I swear to God the words didn't sink in. We went home to get my hospital bag that I had packed for a short three day stay (I have this ready to go at this point), I took a shower (y'all don't know how precious these are without an IV), and we texted all those who needed to know. "Yeah, that's what he says," I told my mom, my husband, my mother-in-law; but I swear to you, I didn't believe it. I thought I'd get admitted and they'd decide to do something else.
Due to COVID precautions and ERs being the way they are, I waited for four and a half hours alone in the St. Mary's Waiting Room in a pain-wasted delirium. By the time they took me back, I can't even tell you what was going on or who my doctor was, which I always remember. I just recall hearing the sentence at some point again "yep, we were told you'll be getting the G/J tube."
My dad, loyal as they come, waited with me until 11PM when I finally received a room. The next day, they said that I would not be totally put under for the procedure but would be given a high dose of pain medicine and twilight that wouldn't allow me to remember or feel anything. I tell them what I high tolerance I have for both as a chronic illness patient. They laugh me off and say trust me, you won't feel a thing.
I woke up multiple times during the surgery and felt it all. Trust me, that shit felt (pardon my french) fucking awful. When we were done, they guy said he never had anyone wake up like that. I warned him? But I digress...
They hook me up to a diluadid pain pump, my drug of choice and typically the only thing that works for me. I will state once again; I am fine taking this drug for a short period of time - after extended periods, I am not. However, when you are in severe pain like myself and many chronic illness patients are, you absolutely need this drug to survive, and often, it does not cover it all. You'll still want to sit there and die because of how much you simply just hurt. I didn't look at my stomach for quite some time because I just could not. I've got a crap sack there; fine - I don't want to see the tube. I'm still not mentally ready for the tube.
For two days, it all seems fine, until day three arrives and everything shuts off. My tube is clogged and they can't get it to work. My surgeon says that he's done hundreds of these in four years and this has only happened to me - he has no idea what's going on. If it's going to happen to anybody, it's me right?
Meanwhile, those that operated on my stomach (which is still sitting in my pelvis, where it shouldn't be), tell my surgeon that unlike typically gastroparesis patients who have some stomach motility, I have none. My muscles are 100% dead, rendering my stomach useless. Guess what that means? It's finally time to address this partially or even totally remove my stomach; but I can't go here yet.
I am just about as depressed as I've ever been. It's been a hell of year, I'm sick of being in the hospital away from my son, I've got a new tube sticking out of my stomach that doesn't work, you're telling me you now have to remove my stomach and my body is now fully addicted to opiates after being on IV opiates for 2 weeks.
But, it's time for me to turn 31.
Let me apologize in advance for not responding to any happy birthday messages, posts, or texts. It will truly go down as one of the worst days of my life. Reading through medical records now, I just learned that they had to sedate me. It was a bad day.
I started out thinking let's just get it over with. I made a medical decision very few know about but have wanted to do for years; it was not a mental breakdown or something I have not prepared for. But yes, you're right - I am hella fucking depressed, and yes, you're right - I've got to detox despite being in some of the worst pain of my life. I will say, I had a FANTASTIC nurse looking out for me this day, and I owe a debt of gratitude for her being there to help me through an absolute mental crisis.
We had the wonderful nurse, my dad, the chaplin, a social worker, come in and do a mental health intervention on me; yes, it was needed, but yes, it was one of the heaviest days of my life. I will say - I am okay with dying. I do not mind leaving this earth. I have lived a lifetime of pain. But I do not struggle with suicide anymore and I can confidently tell you I never will. Having my son means that I will stay alive and I will continue to stay alive as long as I am medically able to do so. As the 1975 say, "Your death, it won't happen to you; it happens to your family and your friends." That does not mean that things are not okay for me and other people who struggle with depression without suicidal plans; it doesn't mean that things are perfect just because we don't want to off ourselves. We still need help, we still need support, we still need light in our dark corners of the world.
During this time, I'm also dealing with withdrawals from the opiates. Let me tell you, I've talked about this before, but this is my third official detox. I'm someone who relies on chronic pain medication/opiates outside of the hospital and I take this responsibly; I don't crave the drug, or high if you take too many (I also don't like my head being messed with); I know I need this for pain, so I use them the way they're meant to be taken. However, when you're hooked up to an IV pumping these into your veins for two weeks straight, your body will get addicted. I have SUCH RESPECT for addicts (y'all already know I worked drug court for almost two years) who are able to handle detox, withdrawals, and not picking up a drug again. IT IS HARD. Your body experiences the absolute worst; fevers, chills, ants in your veins, shakes, I mean you name it. It's not the high you end up craving, as many have said and what I learned supervising addicts; it's the damn withdrawal people can't get through.
So yeah, that was fun, and again, great birthday. Can I please re-do 31? Like, really?
After almost 3 weeks of being separated from my family, I was finally released on TPN (this feeds me through a PICC line through my heart) to hold me over through my G/J tube replacement surgery.
Here is my conundrum:
I am actually very happy.
I hit 30 and I was like, shit, I kinda like myself and life. I don't know what it was, but it just happened. I am still unfiltered, swear all the time (I had an ex once say that it was the most unattractive thing to hear a woman curse and I'm sorry I just disagree - I chose my best friend BECAUSE she cursed and there's just nothing like the "f" word), laugh like crazy, I'm goofy, and PLEASE don't get me started on music. I'm so thankful for the people who are now in my life and the amazing things I do have. And damn, the good times are REALLY fucking (not sorry) good. I love having fun and just being an idiot.
Here's the flip side -
The bad times are REALLY damn (I'll censor myself here) bad.
So what do you choose? How do you keep going this way? How do you cope with a lifetime of pain amid all of the fleeting moments of happiness? It's hard to answer and I don't have it yet. And please don't tell me to pray about it, because I am still not talking with the man upstairs. I so appreciate other people praying for me, I truly do; but it is going to be a long time before I can for myself, and unless you have experienced the level of suffering that myself and other chronic illness patients have faced, I just don't know how to explain it any better.
To quote a recent book I read, Bath Haus by PJ Vernon, "There is no worse pain than deciding to live."
So ending on the positive...
I do love my family, my life, and I'm thankful to be alive and for every single happy moment. It really is incredible how good I feel when I'm not out of commission.
But I've got a long road ahead. Just for once, please, let things be okay.
"If you can't survive, just try." - the 1975
