I couldn’t remember if I’d given myself an IV bag last night. It was completely blank. I knew I must have because I could feel it in my body.
But I couldn’t recall doing it that day. Do you know what helped me remember?
I remembered writing in here that I was in bed giving myself a bag. Then I started to remember other details.
I think I’m starting to get super scared about my colonoscopy next week.
You’d think it would get easier as I get further away from the original diagnosis.
But it doesn’t. The fear grows. What if it’s my turn next? I can’t help think.
My friend that had Stage 4 cancer last summer got bad news about her blood work. I wish they could track my blood work for ovarian cancer. But I never had increased CA-125 levels in the first place.
My dad is…I don’t know. He had a “good day” yesterday. He had to go to the hospital for his infusion and it took hours and hours. But mom was so glad he wasn’t having his nose bleeds (they have him on such high doses of blood thinners that he gets them now - they’ve got to control the clot problem since they can’t operate on him due to the breathing issues). And he wasn’t coughing as much either.
I said: this is what happens when you’re medically fragile, mom. Some days are good. Some days are meh. Some days are terrible. That’s why I can be all energetic one day and can’t get out of bed the next.
It’s not been easy around here. Add in a major cancer screening. Thank GOODNESS for my drivers. Someone else is taking me. When I told my mom, she looked like a deer in headlights. That’s something she usually does, and likes to do. She wants to be there.
Our whole system is so out of whack. I don’t think people realize how confusing that can be. Especially for someone like me.
I’ve really got to talk to a therapist that understands trauma really well. I’m working on it. My massage lady has a referral for me. I don’t even care what she costs, and by now, you know how frugal I am.
I’m genuinely fuck why can’t I spell that word even after googling it!
I’m seriously concerned about my mental health right now. Last night, my mind was in such a strange place. I’m worried that I’m saying too much in here. I’m worried that I’m pushing people away when I need them most. I’m worried I’m going to regret saying things in this strange time of my life.
Do I get offline? Do I just shut it all down? Temporarily? Permanently? What do I need? I don’t even know.
I’m reading about these deepfake videos where they have Obama saying something he never said. Our perception of reality is so distorted already because of those fucking newsfeeds.
I still can’t even wrap my head around the fact that my dad is so sick. I’m still trying to catch up to that. I’m not just afraid of having an organ system break down or getting another cancer.
I’m afraid our medical system will fuck it up now. I was always afraid of that, but never like I am now.
It’s terrifying to think that even in a blue city, a place that’s “known” for being a “good cancer” town - because of our treatment centers and alternative healer options, I could still experience what my dad is going through.
I’m trying not to freak out. I really am. And then this other part of me wants to let go of this worrying about what other people think side of me. I’ve had it for so long.
Ok, I just got therapist info from my massage person.
I’d be open to doing those psychedelics that they’ve shown to help trauma patients.
I don’t even know which trauma to tell her about first.
Do I start in the present and work backwards? Do I start with the surgery? Do I try to tackle anything before that?
I realized that my days are full of so much crap that I didn’t even mention my needles-in-the-stomach appointment I had on Tuesday.
How do you explain the pain of having a needle jammed into your most sensitive and scarred areas of your belly?
When I first got on the table, I got this weird charlie horse in my neck. I’ve been getting them bad all over my body. I’ve had them before, but then we must have gotten me whatever I was deficient in to cause them.
My doc, this is my life now, knew I’d be fine with it, has the needle poised above my neck while I’m standing trying to shake off the spasm. It fucking hurts! They’ve been hurting bad. More than the other times I’ve had them in the past. The worst are when they’re in my torso.
I said: do it. Put the needle in.
I gave clear consent. He jammed it in.
I waited for the pain from the needle to hit me.
I never even felt it. My neck is a little tender today, but who knows what that’s from.
It’s called procraine. I wrote it about somewhere in here, I’m not organized enough to link to it. It’s the one where I have a photo of my belly and the needle.
I never know what’s going on inside of me. Thank goodness the antibiotics are helping me sleep. I get such a deep and restful sleep when I’m on them.
I think I even dreamed last night. I can never remember my dreams these days because I take so many things to sleep. I really need to get a handle on that. I must take four or five herbal things. None of them are dangerous and the doses aren’t high.
But it’s not good for me to need so much to sleep. I also think I get more tired in the heat and it was very warm yesterday. My blood pressure drops when it’s warm. Low blood pressure makes you sluggish. This is why I can seem perfectly fine, and then start to get low energy and wobbly as my blood pressure drops.
Right now, it’s my mind that feels wobbly. I feel like I’m mentally having to reach my arms out to the parked cars next to me, to make sure I don’t fall over.
What if my mind breaks forever? Or, is this me shifting? At lightening speed? Do I need to go through these periods in order to morph? It seems like whenever I go through one of those super painful physical twisted intestines, I come out the other side with more mental clarity.
Maybe now I’m having an intense mental health situation and then it will abate?
Or, will it be like what Shan and I used to fear.
What if I just stay in this broken place? Or a place that FEELS broken to me?
Are my nutritional deficiencies fucking with my brain chemistry? Or is this just the trauma of watching my dad go downhill so fast coupled with everything else that’s messed up in my life?
I finally sent my most recent labs to the doc with the needle. He’s REALLY good at biochemistry. If anyone can figure out how to custom an IV nutrition bag, it’s him. I’ve just been getting standard bags at the other place. We tweaked a few things after reviewing the Spectracell - I’m low in copper and zinc, I believe.
But I REALLY want to titrate it down now. Make sure I’m not just barely getting what I need, but getting optimal levels. I meet with a dietitian in 2 weeks and we can review my diet and IV nutrient intake more carefully. I want to understand this.
I NEED to understand this. I need to get a handle on this part of my medical case.
If they find even a tiny cancerous polyp in what’s left of my colon…they’ll want to remove all of it.
I’m not doing it. I’m not. I can’t handle it. I’d rather do high dose vitamin C and try some alternative stuff. Especially if it’s tiny. I’ve made that decision and nobody can sway me. I’m not letting anyone cut into me right now. No fucking way. The risk is too high.
I’m afraid I won’t come back out. Or, if I do, I’ll be even more crippled than I already am. I’ll raise the money to do the IV bags if I can’t get them cheap - which I’ve been working on for six months now. Fucking molasses. All of it moves like molasses.
If only someone in this family became a doctor!!!!!
We are business people.
I had a strange conversation with a non-relative yesterday about my dad.
I’m going to note here that it’s always a good idea to let the person in the challenging situation to set the tone of a conversation about the really sick patient.
Especially if one person is a blood relative and one person is not.
I spend so much time having to explain how dangerous it is for medically fragile like my dad and me. People think he’s going to pull out of this! Be positive!
Um, ok. That can work for YOU. But I’m left living in the nightmare. I’m the one worrying every single minute that I’m going to find my dad dead on the couch.
I worry when I don’t see him move for a few minutes. I worry the oxygen machine will suddenly turn off in the middle of the night.
My ear is half cocked to see if he is hollering or if he falls. It’s different when caring for a baby. Which I’ve never had to care for my own little one, like I said I think I would have been such a worrywart. I KNOW I would have been such a worrywart.
We have to figure out entirely new systems in the house. Assess whether or not to switch doctors which is terrifying in itself.
They don’t like when patients make decisions like that.
You have to fight the whole god damn system if you want to stay alive.
I’m scared. I’m beyond scared. I keep think I know fear and terror, and then I get to experience an entirely new level of it.
What if I can’t handle being on the Internet in ANY capacity? What if it’s more harmful than helpful? What if I lose that connection with people who are cheering me on. It really does help when I share heavy stuff and people say they are with me and seeing me and all of that. It calms me. It soothes me.
I’m so afraid I’m going to wither away in this fucking basement, with no voice, no people, or left in a hospice situation that I don’t like, that I would not have chosen if I was able to speak out. I’m tempted to ask my Facebook people to make sure I’m well taken care of if I get too weak or disoriented to do it myself.
That’s why so many people opt to take themselves out before they reach that point. I get it. Who wants to be so sick and weak that you’re at the mercy of those who may not honor your wishes.
I need to write them down. Find my own hospice. Decide how I want this to go. Even if it’s not my time yet, then at least having that complete will make me FEEL better now.
Safety is so important.
I can feel people staying away. I get it. As I said in my podcast that I’m nervous about sharing - it’s less philosophical than usual - I said my life is a tornado. I get not wanting to come near. I’m so so grateful for the people who stay. And hang onto me while I’m being tossed and turned in the high winds. Their ropes wrapped around their wastes and me grabbing a rope for a bit, while I try to make sense of everything.
I’ve been crying a lot.
What this guy who was mansplaining death and my dad’s medical case to me - he has zero expertise in death, theology, or medicine or my dad’s medical case for that matter - doesn’t realize is that I don’t have the luxury of pretending everything is ok.
The nightmare is my entire experience.
He didn’t understand what a “health advocate” is. That I’ve been my dad’s health advocate for years and I dropped the ball this year. I know I had good reason! But that doesn’t make knowing it happened any easier.
He said: you sound like you control your dad’s life.
Omg yeah I control my dad’s life (there is some control issues in the family if you hadn’t noticed by now, hence my rebellious streak).
I said calmly: no, I am his advocate and have been managing his medical case for years.
It is SO FUCKING MADDENING when people to understand what it requires to stay alive in this medical system! That we have to become experts on our cases and our loved ones just to stay afloat, just to understand the doctor meetings. You can’t just listen like the old days.
Instead, they are all “marvin darling” is what we call it. When they’re like: oh you’ll be fine, this will work great. There are some possible side effects, but this guy is strong! So what time did you make in the Boston Marathon?
They are fascinated by my dad, of course.
He’s an unusual patient.
I don’t get quite the same fascination. I don’t have the penis, for starters. And I haven’t done any physical feats to impress.
I just get treated like a weirdo.
Which I am.
But I’m good at what I do. I’m good at keeping myself alive.
I feel like I failed my dad. I know that’s such a heavy load to lay on myself. There are so many variables. And it was just a perfect storm of shitty luck that he had.
It’s the worst feeling in the world next to feeling invisible, for me at least.
I hate feeling invisible. That’s why I think getting offline would be detrimental in the grand scheme of things.
For now, I’m not making any decisions. I’ll post enough to keep the accounts active until I can get things more steady in my mind, see what happens with my dad.
If he is dead by the end of the year….
Just the thought of it. If he’d been fighting for years and was tired, that would be one thing.
I think there is so much cognitive dissonance in this country that many people literally can’t connect in their minds that THEIR actions may be leading to ACTUAL DEATH.
I get it. That’s a heavy thing for the mind to absorb.
Fine. If they’re struggling to make that connection, I’ll make it for them. I’m not quite ready to do that publicly (is anyone reading here? I hope not. Seriously I want to go through and read and edit, especially before sending out a newsletter or anything. I’m worried I appear “crazy” and unhinged - which maybe I am. What defines “crazy” anyway? A bunch of white old men deciding what’s NORMAL is not NORMAL! Look at what’s '“normal” in our society right now! Kids in cages! Now legislation about EXECUTING queer people in Tennessee? Geezus fucking christ.)
I need them to wake up because they need to help fix the mess they created. They need to fund getting kids out of cages instead of funding the monsters who are putting them inside.
They need to shore up the medical system. They need to fund the right side in the next election. They need to use their tech connections to ensure deepfake videos don’t take over the Internet in the months leading up to the election. They need to find ways to FIX THIS SHIT. That’s what I’ve been wanting to write on Facebook for probably a good two years.
Too many in this country made this mess by voting to protect MONEY. And now people are dying.
I just didn’t think I’d be witnessing that in my own house. I thought it would be me.
I thought it would just be me.
Even the strong fall.
Even the Negrins can’t live forever.
Something will take us out.
And this medical system is simply moving that along at a faster rate than it would have 10 years ago.
I keep hearing that people feel it’s worse. I told the staff person at one office about the hospital system blowing my dad’s case off in the winter, and they said they’ve heard from COUNTLESS people that they’ve also had horrible things happening in that system.
I’ve had a bunch of medical people tell me that.
“I keep hearing that. About that system. That it’s a total nightmare now.”
The problem is?
A monopoly has formed.
That’s the thing that nobody is really talking about publicly.
The medical system has already been moving toward that for years.
Under this administration, all these companies are forming conglomerates.
It’s probably the most dangerous thing happening right now.
That’s why nobody is really giving the tech giants a hard time. They people in power are too busy consolidating their own power.
They young white bros are doing this in the tech sector.
The rich white old men are doing in the medical industry and beyond.
It’s one massive power grab.
We haven’t even come close to the worst of it.
I feel sick just thinking about it.
Us, the little peons, the working class and below, and the marginalized will pay the price. Whatever price will bring these power-hungry assholes the biggest profit.
I don’t want to do this. I don’t want to be a Voice. I don’t want to call out powerful people who can make my life even more hellish than it already is. I don’t want to be that person. I want to wake up in a body that works. I want to go to work, and bitch about my co-worker who always steals my lunch. I want to peruse websites that have cute clothes and plan my trips for the summer.
I want to do what so many people are doing around me.
Living life like everything is normal.
I wish it was normal so bad!
I should go my computer is dying. And I have to get myself to the U Village for my IV bag. It’s such a long process and I could be doing it at home!
I’m so tired of all of this.
I know it’s hard for people to hear. I don’t want to DIE.
I just want to live in another body that works even partially right. I could take a chronic condition. ONE chronic condition. Or, be on a diet that doesn’t include dairy or wheat (piece of cake now).
I’ll do any of that. I’ll do it. I’d give anything to have some function back and my dad ok.
Money can’t buy you new organs.
Maybe one day. But now like what we need.
Money can’t fix my dad’s lungs so that they are strong enough so he could even HAVE surgery to replace them.
What a fucked up world we live in.
I’ll keep at it. I’ll call this therapist. I’ll keep writing here for now.
My mind hurts though. It hurts really bad. I see why people have told me over the years: at least people take your physical pain seriously, having mental health problems means EVERYTHING feels wrong all of the time.
Not quite like that but that’s what I got out of the comment.
It’s true. If you can’t get your head screwed on straight, nothing else feels ok.
Oh man, I wish I could just shut my eyes and go back to sleep. For about five years. And wake up healed.
I’d be ok with that.
But I have to get my ass up and drive a half hour for an expensive bag of nutrition.
I’m trying to eat well. I really am. I haven’t had any of those cookies now in nearly a week. I’m not even craving them. It all sounds gross, truth be told.
My whole diet is so so hard. To go through this with my dad is already tough.
To go through it while hungry, and scared for my own medical case is a whole other level of tough.
I hope I’m making sense here. I know I’ve been rambling about SO many different things. Trying to imprint ME onto the Internet, make sure I leave my philosophies behind. So anyone, the kids, or whoever, can take some snippets. I wonder if it sounds super arrogant what I’m saying about the kids.
There is a reason people paid me good money to write kids health education curriculum. But still. I am afraid of the mommy bloggers. I’m afraid of pissing people off to the point that I’m going to be attacked.
I don’t know if I can handle it. I know I can’t if I don’t have people backing me up. I can’t keep putting my own health at risk while so many stay quiet. People who can really make significant change.
How many times will I ride out into battle with just my small crew behind me?
The only way out of this is being brave enough to go super bold.
With a larger army though, I’ll be under more attack.
There’s no easy way out of this one.
I either fold up camp and get offline.
Or, I continue forward and lean all the way in.
Fuck. I don’t wanna.
I wanna be like so many others and do nothing but take care of myself.
Then I think of the kids. I keep getting little messages here and there.
They want me to keep doing this. They WANT me to speak out. They want me to challenge the status quo. Take on their powerful people.
Only for them.
For my dad. And the kids.
That’s the only way I can do this.
There’s enough of them now. They have social media power.
They need more adults to say: hey we need to fix this shit! We’re leaving a totally fucked up world for our babies and it’s not right! I’ll divest my earnings. I’ll donate my 2017 tax break money to immigration reform and organizations helping the refugees. Ok, that’s cool, if you do that, then I’ll work on climate change, that will be my baby and I’ll invest and get MY friends to invest in that. Wonderful you two, I’ll focus on restoring democracy and voter’s rights. Great, you three, I’ll take on healthcare rights….and so on and so on.
This is obvious no? Or is it just in my head?
Reality. Can get distorted. So easily.
It helps. To write in here. A lot.