I spent about 5 days in the sepsis ward, with the nurses and technicians bouncing back and forth to keep me comfortable, fed, and medicated.
My lactate was at almost 8. My blood counts were all over the place. There were opacities in both lungs on x-ray. They stabilized me, and, after those few days, sent me home.
I spent the next 10 days on antibiotics and steroids. I was nebulizing up to 4 times a day just so I could breathe.
We went to urgent care when the antibiotics ran out because I was not getting better. Another x-ray and there was no change. That was Saturday. Monday, the pulmonologist who sent me in the first time had his physician’s assistant call me. I talked to her. My numbers were off and he wanted me back in the hospital. I asked if he had seen the latest set of x-rays. She told me to hold on.
Five minutes later, she came back. There was no change. I had to go back in NOW.
I showered, packed a bag, and drove myself up. I had texted Black what was going on. He was a couple of hours away doing what he does best. I walked in, registered, and told the staff what happened. I explained to them that this was a rebound trip, and my mental health had taken a hit.
I was crying inside. I was sobbing. I couldn’t breathe right. My lungs burned and hadn’t stopped burning since my first admission. The staff, bless them, took my mental health needs seriously when I told them about the hit. I wasn’t suicidal. I didn’t want to start sobbing in a waiting room full of people. They put me in a quiet room and let me be there and I teared up and did my best to keep it together.
Inside… I was falling apart.
Inside… I was sobbing.
Black finally got to me, and I got moved to a bed where they put in an iv and started treating me. I had x-rays. I had blood tests galore. The numbers that were off when I left were even more off. My lactate had hit over 7. From what I understand, that’s the start of a bunch of bad numbers that could lead to a really bad outcome.
Other numbers came back. White blood cell count through the roof. This number was wrong. That number was wrong. This number was dangerous. That number was dangerous. The hospital has an app where you can see the test results. That one number though – my lactate/lactic acid. That was the number that said “sepsis.”
Double lobe pneumonia. The start of sepsis.
The ER staff pounded on me with the IV and antibiotics and steroids for the first several hours, stabilizing me so I could be moved to a ward.
Back up to the same sepsis ward I went.
I got there, and once “settled” and Black gone home for the night, I sobbed. I had brought my Cupcake and Zen and was holding on to them for dear life.
Cupcake
I should explain a bit about Cupcake. Cupcake is my “emotional support stuffed animal.” She comes with me everywhere. She is my focus for pain or anxiety, and in my mind’s eye, of all my stuffed animals, she’s alive.
There is a First Nation legend, a story I read and re-read during my childhood and I took it to heart. It was about a girl asking her grandmother why the corn husk doll she was making didn’t deserve eyes. “If you give them eyes, they gain a soul and are alive,” is what I remember from the story.
So, Cupcake… Cuppycake… is alive to me.
If I have her in my hand, medical people can do things to me that I never consent to. She helps me put the pain over there, instead of keeping it, or my mind, in my body. When I hold her and close my eyes, I’m in a green growing place, with beauty and love and more.
She is how I cope with pain, stress, worry, anxiety, and a whole lot of other emotions. She helps me.
Cupcake helps me so much, that I have spares. Cookie, Popover (Poppy), Pumpkin, and Berry. They are Aurora Bush Babies from the mid 2010s and they are all almost identical, except Berry’s purple.
Cupcake lives in my pocket, or in my purse when I am out and about.
I wish I could afford an actual service animal, but I can’t. Since I can’t, I use Cupcake.
Just because I gotta grow old doesn’t mean I hafta grow up.
The days
Days blended into evenings. I lost the track of time. Nurses, patient care technicians, and two different doctors, a hospitalist and the in hospital pulmonologist, came and went. Black was there whenever he could be to talk to the doctors about my treatment.
I made myself a nest on the floor. I like sitting on the floor. I always have. It’s a “safe space” for me because I know I won’t fall off the floor. When the staff saw me the first time, they ran to me to help me up. “No, no…. see? I put a blanket down so I could sit on the floor. I didn’t fall. It makes me feel safe.” The ones that understood would nod. Those that didn’t, listened to me as I explained why.
I crocheted. I made about another 20 squares. I kept my fingers busy to put the negative in my head to good use. I sent messages to Sempai and the tribes I’m a part of. I got an arterial blood gas draw after asking the technician if I could scream during it. She said yes. I knew what to expect because it was my second one ever, and it hurts. It still hurts a lot and I have been wearing my brace to protect the site to help it heal. My entire wrist feels sprained from it, and I know it’s temporary.
I tried to send a message to a vampire family I belonged to. Yup. Belonged. I left as soon as I got home and could get on my computer. I told them where I was, and instead of sympathy, I was told I was a bullshitter and they, with decades of nursing experience, knew I was bullshitting and was not sick and was faking it.
My test results said otherwise.
I tried to explain, but I was attacked for “using taxpayer money for no good reason” and more. It was a bad attack from them when all I wanted was a few words of support, and that they were glad I had messaged them.
I shared their words with three others other than Black. Black grunted and told me to leave the group and block them all. My three female friends who saw the words of those nurses all agreed with each other even though I didn’t tell them that I was talking to each of them. “You do not deserve that toxicity.”
I don’t. No one does. Doesn’t matter what happened in the past, when someone reaches out a hand when they are drowning, you’re supposed to take it.
The part that got me was all the guilt and more they were giving me because I don’t support ACS to their satisfaction. I’m burned out from ACS. I also prefer to support cancer patients and survivors locally. Our friend who died a year ago, she got about a dozen hats from me to keep her warm for chemo. She also took a bunch of the knitted hats I made and shared them with her chemo group. I would have given her all of them if she had wanted to take them all. Instead, I let her have all she wanted so she could give them out.
At her funeral, I was asked if I had made her hats, and I said yes, and I got thanked for being so kind to not just her, but the person who asked me who had benefitted for the love I had made.
That’s the sort of support I prefer to give than burning out at constant “relay for life’ events. That’s the sort of support I prefer to give instead of doing jail and bails, or auctions. I don’t annoy people with “come and donate!” messages when I do do an activity for ACS of any sort. That vampire family did. They had pretty much every single event when Black had his shows, and I found find it annoying and frustrating that I got messages demanding that I participate when I was already booked up for something else by months. The last time I did an auction, my board was 18,000 lindens deep. I think I did good that event.
Besides, Black Ort is an over 30 year cancer survivor and he too has his limits to support ACS.
Besides, there are other places and organizations to support. Cystic Fibrosis. Diabetes, Lung disease, Kidney Disease, Multiple Sclerosis, and so many many others like Wounded Warriors, Toys for Tots, Make a Wish… I don’t need to be constantly supporting ACS.
Except that “family” had unreasonable demands for me to support what they wanted or I was a bad member. More about them later.
Tests and tests and tests. Pulmonary tests. Proof that I need to be on Oxygen for at least the time being. Proof I need my cpap. Proof I need to be on pulmonary medicines to help me breathe. Proof I’m sick kept coming in. Bad test results. Bad x-rays.
Still, the nurses and other staff were there to help me through. Especially dietary. It was shredded cheese, cooling gravy and cooling fries, but it was POUTINE! It might not have been perfect, but…. POUTINE!
My heart sang when I saw it. Fries. Shredded Cheese. Gravy. That helped my mental health so much, I was crying tears of joy.
My iv started to blow. I was upset and in tears because it was a good IV. I didn’t feel it go in and it had to be replaced. They pulled it, and thought they had stopped the bleed. The puddle on the bed and floor said otherwise. I fainted and laid there while they did the immediate clean up. I came to in tears and the nurse did her best to support me. In came the vein whisperer with the ultrasound and the next iv was put in and it stayed until I left. I needed it for extra fluids, antibiotics, and steroids.
More testing. More results. Then this pulmonologist the day before I left showed up and decided she would put me on a an iv diuretic. “This will help you loose weight and pull the fluids out of you to help your lungs.”
I will NEVER go on a diuretic again.
It wasn’t even half an hour when my kidneys started to overwork and the pain started. I couldn’t stop peeing.
By the time the nurses showed up to check on me, I was swearing and all but screaming, my back and left side hurt. Finally, finally, I gave in and took one pain killer. One. The entire time I was there, I only took that one. Even my day nurse was shocked at how I was acting. I was happy and smiling when she gave me the diuretic through my IV. The moment she saw me with her replacement and hearing me swear at them, but not AT the nurses themselves, she knew something was wrong. They sped up my iv to get the fluids to flush, but damnit, that hurt.
My kidney still hurts. Oh, yes, there’s more about this too.
Finally discharged after 8 nights, and I went to my computer to leave the vampire family. I sent a message saying that there was no excuse for attacking someone who was in the hospital. I tried to be as neutral as I could, but the queen’s reply told me that they had been using me this entire time. I wasn’t “family” to them, but another mark. I wasn’t “sick” enough, so I must be faking, so therefore I was a bullshitter and didn’t deserve any sympathy from any of them, because their precious princess over there, she actually had sepsis, and what I had had wasn’t. The only people they believe that deserve their sympathy was actual cancer patients, and since I wasn’t a cancer patient, nor was I “actually septic” in their view, I didn’t deserve anything.
It’s not a competition to see who is sicker. What I needed was a moment of support. What I got was a slap to my face at best. If any of them had been my nurse in real life and had treated me like that, I would have been going all the way up the chain of command to get them fired or removed from the department they were in, because they were obviously unfit to be nurses anymore.
Good riddance to them. I don’t need that toxic cesspool in my life anymore.
I went to bed last night and had just fallen asleep when a leg crap woke me up. I got up, walked around a bit, and went to the bathroom because my belly ached. I sat on the bidet trying to use the powers of water to get things, well, moving.
The pain increased. I started to cry out. It kept getting worse and worse and worse. It was my back, my left side, my entire belly. I felt like there was a block. Black finally heard me and got me a bucket just in time for me to start vomiting.
It’s hard for me to vomit. I’ve done it three times since I’ve been here, and all three times have been in the last couple of months. Up came my heart medicines, my steroids, my antibiotic, and my blood thinner. That’s when Black called an ambulance. I couldn’t stop screaming.
I got carted off to the hospital, with Cupcake in my hand. “Give this to her. She’ll be quieter if she has it.” Black’s right. I am quieter with Cupcake.
There, at the hospital, the paramedics had to wait and wait and wait and wait until staff could take me. First I got moved to a hall bed. Then the bed got moved to one of the curtained rooms. I was begging them to let me use the toilet, but I’m a fall risk, so they refused to.
More blood draw. Another iv. My fifth one in a month. I kept begging them to let me use the toilet. I got handed a bedpan. I don’t know how to use a bedpan. “Slide it under you,” said Black.
I kept begging for the toilet. For someone to help me get there. Nope. Use the bedpan. Black finally convinced them that a commode might be better, so they set one up beside my bed.
It took two people to help me off the bed and onto the commode. The resulting actions speak louder than words. “You should have left me use a toilet” I said, looking at the debris field between my feet.
I had sat on the commode and, in tears and screaming, felt the plug give way. Everything came out. For a good several minutes, everything from the deepest depths of my Hell came falling out from me.
And out
And out
And even more out.
The small bucket the commode had fell to the ground, splashing everything, including my legs.
It still kept going. And going. And going.
“I told you I should have used the toilet.”
Black helped clean me up, got me into a new gown, and new socks, while the staff had to deal with the mess they caused. If they had helped me get to a bathroom, this wouldn’t have happened. Nope. Fall risk. Can’t risk me falling over in the toilet.
Catscan happened. Three litres of IV fluids, my antibiotics, morphine, and a cooter canoe after a quick catheter, and a wait for me to stabilize. The pain in my back and side never really went away. The morphine high made me dizzy. I knew if I tried to stand with it, I’d have fallen for sure, so I obeyed, trying to convince my body to use the cooter canoe. It didn’t want to obey. The trauma of a catheter was too much for my poor bladder.
Finally, after hours, they agreed to let me use the toilet. That was an ordeal that took way too long for them to organize. They had to find a walker for me. They had to make sure the toilet was free. They used the commode as extra grab bars. When the nurses got everything set up, I started to make my way to the bathroom. Except some guy who was there too in his hospital gown saw the open door to the bathroom and ran in, closing it behind him.
The nurses looked at me in shock. Black growled and found a place to sit. The nurses put a chair at my knees and had me sit and wait until the guy got out of the bathroom. He finally got out, they checked it, gave me the okay, and I stood up and kept trying to walk to it with the walker.
I should have peed right there in the middle of the hallway.
I left the walker at the door and Black followed me in, bumping the commode against me, moving around, doing this and that. I snarled because I was trying to get into position. “In or out. Choose now!” He chose in.
I sat. I did my business. About 1/3 of the liquids I was given came out, but without burning. That was a good sign.
The doctor came back, told me my numbers were good, even my kidney numbers, and sent me home with “rest, sleep, drink fluids, and recover.” I was and still am in pain from my kidneys, but I’m coping. My pain level instead of being at “screaming,” it’s at “hot packs and ice packs” for pain relief. I prefer pain relievers, not pain killers. There is a difference.
So, that’s what I am doing… resting. Sleeping. Recovering..
I have a really long road in front of me. Months of being on oxygen. Months more regaining my strength.
They really should have let me use the toilet…
My life is a work of He.art 