Battle Hymns of a Hot Mess Mom

Where do I start brewing and spilling this tea? The last few days have been a fog of pain, toilet, pain meds, toilet and sleep. While I have the desire to post every day I realized that there needs to first be energy to write. 11/4 was a blur of me for starters…I started to turn my numbers on the 4th which was my first indication that there was going to be hope soon of lessening the pain. To summarize the last two days…Dilaudid and I can not play well without me being high as a kite. 0.4mg is too much for me…and when I’m on a dilaudid high I not only don’t know where the bathroom was nor did I understand the difference between my left and right. Suddenly my routine became toilet, bed, toilet, bed…11/10 would not recommend.

Today became a turn of events for me. Dr. S moved the goal posts. I don’t take well to that. There was a goal release date for my incarceration and the all of the sudden…it was we’ll see. The f*ck we will. On the 4th, they put me on straight f*cking sugar water along side dilaudid…and then all of sudden I also needed my finger pricked and I needed to have insulin. Um…wait what? What’s going on now? Why am I doing all this? I have ‘betes? What the f*ck. I know you like my insurance, and you wanna pump those billables – but this is a bit extreme. You need to run more tests to pad your billables, okay MRI let’s go. But injecting my body with stuff…wait, do we need this? I don’t understand. According to the Endourologist, J, TPN is liquid sugar…so you’re feeding me pure sugar to give me insulin to counterbalance the sugar. I’m not a doctor but this sounds stupid. Okay fine, you want the sugar thing…blah blah blah. I ask “We’re still on track for discharge?” and then I got the blood boiling b*ullshit. “Well, I can’t predict the future and can’t say for sure, with your sugar now spiking so high and you’re still have diarrhea, we have to see what’s going on and make adjustments.” I’m a grown adult and I know things happen, but you’re moving the goal post…why? Ohh cause tomorrow I’m not on your rotation anymore, it’s another doctor that will “make the decisions” – this makes you sound like a tw*t-waffle. The last 14 days with you has been about let’s “tweak” this and “tweak” that and I’ve been a good little girl going along with your “tweaks” despite the immense pain that you told me you couldn’t give me any pain medication for only to find out you could – it just was part of the “tweaking process”. You heard me suffer but you had to “slowly tweak” because the transplant process was so delicate and everything needs to be in balance. Sure I’ll bite. But do patients recover better when they rest and aren’t in immense pain? Does the research show withholding pain medication is better for patient care? Not a doctor…asking for a friend. He says, he can’t say for sure that our goal date can be attained. It’s a balance and we have to wait to see.

The. F*ck. We. Will.

So in order to get promoted I need to see that you are improving in the areas of leading large scale projects, coaching/supporting your peers, skip leveling your communications. A few weeks until promotion. I see that you have improved in leading large scale projects, coaching peers and skip leveling your communications but you know I don’t know the essence of who you are on the team. Like I feel like I need more.

No, you just don’t want to promote me. Then you’re going to gaslight me into thinking this was all in my head. No sir…we’re not playing this game.

So I had it out with Dr. S. Don’t move the goal post. I haven’t seen my children in 3 weeks, I haven’t touched, held, kissed, cuddled or anything remotely maternal. Yes there is medicine of the modern world with it’s technology and vast vast research, but there is also this very incredible medicine that children give to their mothers. That medicine for me is: The will to live. I said what I said.

Without my children, I wouldn’t have gone through this fight at all. Why not? Cause it f*cking sucks. It f*cking hurts like hell. Radiation felt like I was being boiled a live from the inside out. It f*cking agonizing pain. “How are you?” …you really want to know I’m suffering? So you feel so unconformable and just say “Sorry” I don’t want to do that to people. “I’m hanging in there!” is the staple response.” Its not because I can’t f*cking handle the truth, it’s because I f*cking love you that I don’t want to tell you that my skin hurts from the radiation burns, my chest feels like I just got shot multiple times and I can’t breathe. I’m curled up in the fetal position looking for the f*cking will to live. I’m screaming in my head, just let me die. And THAT is where my children come in. They are my will to live. They are the thoughts that flood into my head when all I can say to J is “I can’t f*cking do this. I can’t. I can’t.” They are my will to live when I’m curled up punching my own legs to feel pain in another place other than X. I feel like I’m on the brink of dying, what is this nader sh*t? Why does it f*cking hurt so badly? Please make it stop! Please make it f*cking stop. It hurts so much. Please stop!

Then silence. I hear their baby voices. “Ish. Ish. Ish!” Yes my love those are fish. Do you see how pretty they are? He’s drooling and pops his binky out to say it again…”Ish.” I see his chubby face as he falls into my arms looking to be kissed and held. He flops into me. I breathe in his smell. My baby. My perfect baby. He’s peaking in his crib at me. He knows he sees me but has to pretend like he doesn’t so I come closer for his sneak attack. When I’m just about there, he jumps up, “Mama!“

She lays on the boppy asleep after a feeding. I’m typing away at some worthless email. She snuggles into my body, I look down to make sure her head is still securely on the boppy. She’s awake with the biggest gummy smile. I know she’s hungry but first she has to stretch her biggest stretch. It’s a quick change and then feeding time again. She rests her hands holding me as she feeds and just as quickly as she woke up, she’s fast asleep again. I go back to my emails. She sits next to me as I’m working on another project, at least it’s in the Healthcare field…I can pretend like I’m doing something positive for humanity. She’s playing with a toy and shows me over and over. I close the laptop and pick her up to make a snack. It’s bananas today. She loves being held by me, we do a little dance to Elmo, she’s tired but needs a snack for a good nap. We eat and then we lay down. She rolls on my face…then rolls off, rolls on my stomach, and rolls off. Finally I grab her for a quick kissing cuddle and tickle as she laughs I know she is starting to be over tired and over stimulated. I pat her gently, her eyes slowly close, the fan blows cool air on us and she drifts to sleep.

That medicine is irreplaceable. I know there is research on this out there in the medical world. This is not in my head. Mom’s lift f*cking cars to save their babies. I may not know 100% what this is, but I know there is medical proof that Mothers need their children. Truth is if my children were adult children with their children…I don’ t know if I’d spend the energy to fight. I’d enjoy the time I had left and just that. I don’t know if that “will” would have pulled me to fight this hard. But my children have only just scratched the surface of life. I need them as much as they need me. I simply need more of them.

After my exchange with Dr. S – I realized that it would be no real reason to discuss this any further. Tomorrow I would have a different doctor on rotation with his/her own assessment and own observations. So I kicked it into next level. Patient advocacy. I need to speak with my own doctor and my own hematologist…Dr. P otherwise I’m going home tonight AMA. Let’s play chicken. Dr. P was off today but said would speak to me via phone or in person tomorrow.

I need to understand:
1) The real parameters for discharge
2) The purpose of blood/insulin as I am not diabetic and no longer on TPN
3) The actual status of my current progress

That’s all I got.