I’m realllllly trying not to freak out about this change I can feel inside me.
I was trying to talk to a friend today and all I could think about was what I should do next.
This is what happens. I’m going along, hoping that I can finally turn a corner, and maybe have something NOT be stressful for even a short time.
My friend, fortunately, knows a lot about the medical world, works in it, volunteers in it, knows a lot of shit. So she offered to call my gastro office and insisted that I also email the doctor. THIS is why sharing my case and what’s happening is SO freaking crucial now.
She isn’t going to let it slide. I can’t pretend like it’s not happening because I’ll have her following up with me about it now.
This is a very good thing.
My mom offered to take me to the Mayo clinic in Phoenix, which is amazing. But I called and they don’t take Medicare! And they have no appointments available! They book out only 12 weeks at a time.
I called the Minnesota clinic, which is much bigger, I think it’s the biggest campus, and she said there are so many sub-specialties that she’d need to know more about my medical case in order to tell me if they even have availability.
I can’t go into surgery in any sort of chaos or my mind….
When something like this happens, I feel paralyzed, terrified, can’t think about much else. Of course, now I’m FINALLY supposed to get out of town and have some NORMALCY and I’ll be freaking out the entire time. I feel like the lowest part of my colon has dropped or something. I’m worried that it’s even harder for food to get through. It’s so embarrassing to admit this! But I know that people who love me don’t want me to worry about that or to suffer any more than necessary.
It’s so maddening that so many people think I’m fine!!!! Things are slowly breaking down inside of me. What if I can’t make it through this bout? This is the torment I live with all of the time. What will get me next. It was already pretty intense BEFORE my dad got sick and died.
Just thinking about it and I feel this lump in my throat and my chest feels all tight. The stress isn’t good…
And to know that I can’t even easily get into any of these hospitals. Damn it. I should have started this process a long time ago. But I had to get the IV nutrients piece in place and gain some weight - or I won’t be able to travel as it is. A lot will depend on the next week and a half.
If I can’t travel in Washington state….
I can’t think today.
The fear. I don’t know how to explain it to able-bodied who haven’t dealt with a lot of medical issues.
I know one person whose spouse has had some serious cancer this past year. She admitted she wasn’t doing well mentally with it.
It’s intense. The whole thing.
When I’m in this state of mind, everything else falls away. I can’t think straight. I will go to my class tonight even though it’s pretty warm outside, because it’s one of the only things that gets me out of my head. I literally CAN’T think of anything else when I’m focused on the exercise or the word we’re using for a skit. It’s an incredible feeling - to realize I can walk in that room and not think about any of this. I’d like to utilize it for anxiety in some way, but of course, first that oxygen mask has to get on me. I guess it’s time for to ask for more volunteer help.
Without more help, there’s no way I can focus on getting my medical case organized and to these hospitals. I’ve heard good things about Stanford. But I’ve GOT to make sure I’m meeting with smart people who understand my issues or the whole thing will be a waste of my precious energy.
It’s astounding to me how often ables (ables is a nickname for able-bodied people) don’t appreciate how precious time is to someone like me.
It’s even more astounding how many people think that because they have a job and money that their time is more important.
They wouldn’t feel that way if they thought they only had a little time left on the planet!
As if someone with some money in the bank has more importance than somebody who might be dead soon. it’s embarrassing. If they could see how it appeared from my perch, they’d be mortified. I’m trying to wake people up as slowly as possible, for both my own mental health, and so that they can hear and see in a way that allows them the opening of the mind, and not shutting it down.
But how much longer can I patiently say: PLEASE I can’t hop in the car and pick up my Chinese herbs easily! (I ended up getting a lift downtown this weekend to get them, not a great use of my limited energy. I can’t hop in the car and do ANYTHING easily in this city anymore, none of us can with the traffic the way it is. Thankfully, the herb pick-up went ok.
So this is what happens. My doc’s family are dealing with their own issues, which is why it took them so long to get back to me, and why I nearly ran out of my motility herbs before I got more from him. Everything is getting trickier and trickier for someone like me.
I still can’t figure out how to get the IV nutrients at a lower cost. I’ve been researching this since December. I can’t believe what I was able to do even then.
And what I’m able to do now.
I don’t know man. I don’t know how long I can do this. The endless hunt - for WHAT? I don’t even know if I’ll find any answers after hunting around the country. My only hope, it seems, is to push my story out further. And hope that the people I know with contacts and privilege and networks will help me get my story out, or if they’ll hoard their contacts and their privilege and their networks because who knows why. I’ve never understood this. I’ve always been so willing to share whatever I have and make introductions if I can. Unless it’s not appropriate in some way, of course.
How can I do this? How am I going to make it through this? I’m just now starting to get a little bit clearer thinking. My head feeling a little less overwhelmed with the grief.
The fear. What is happening inside me!?!!?!?
I don’t know how to tell people about this without feeling mortified about what it means.
My insides are breaking.
How do I make sense of any of this?
How do I process this?
Fuck I don’t even have a therapist right now. I can’t catch up. I can’t do activist work. I can barely get my own shit done. This is the plight of so many people in this country. We’re just trying to stay afloat, stay alive, figure out how to move forward.
When I called the Mayo Clinic in Phoenix, I asked for the gastro department. I asked how far they are booking out. She said I’d need to talk to the appointment people. I asked how much a consult would cost if it’s out of pocket. She said I’d need to talk to another department to get that answer.
THIS HOSPITAL IS KNOWN FOR HAVING PEOPLE FLY IN FROM ALL OVER THE WORLD.
And I can’t get basic answers. I couldn’t get into my doctor for a second time in a month on Thursday. My friend’s theory is that they KNEW they double booked on Thursday - she has worked on that side of things - and let me come in anyway, hoping the doctor would figure it out.
How lame if that’s the case.
When I feel this kind of fear, it’s not easy to think straight. I already slept so much over the weekend so it’s crucial that I get some things done. I’m staring at my list, staring at my inbox, I need to write people back on Care.com, and all of this basic stuff, and I can’t do it. I can’t think of what I’m supposed to say.
My friend and I were trying to have our usual conversation, talking about nothing in particular, but I finally had to say: I need to make some phone calls. She offered to jump in and do some calls too. Now I have to wait until the gastro calls back. I guess I should write my primary doctor. I feel like I’m writing to her too much!! Isn’t that a terrible thing about our medical system?
It might be that whatever is going on is just the new geography and won’t impact me too much at all. It’s quite possible that’s the case.
I can’t risk waking up in excruciating pain and being rushed to the ER only to determine something is all twisted or cutting off blood flow in there. They’ll insist on surgery. There is only one surgeon I’ll allow to operate on me. He isn’t the nicest guy, but my home nurse said he’s the best for cases like me.
I guess I should call and make an appointment with him. Ok I passed that to my friend. SO MUCH EASIER than having it all on my head. Calling that particular facility is a nightmare. You don’t get a live person and need to know exactly which number to push or you end up in an endless phone menu loop.
What else, what else should I do. I guess write to my primary and alert her so that in case I do need to get my case to the midwest Mayo, I have things in place.
I don’t want to be cut into!!!!!!!!!!!! i want to have a normal gut!!!! I want to eat!!!!!! I’m so hungry. I ate disgusting maple bar frosting and a protein drink for my mid-day meal - that’s often all I have until that main meal of broth and eggs. I can’t believe this is happening. I STILL can’t believe this is my life. Even after all this time.
I can’t believe my dad is dead.
I can’t believe we are selling his car.
I can’t believe I’m getting worse.
I can’t believe any of this.
I hate when this happens. When I’m sitting here on my own, which I need to be in order to rest, sometimes people want to visit on Mondays but if I’m going to be talking tonight, I need to rest today. I did end up doing some visiting on the weekend, though not what I was hoping for, so I need to recover from that.
I hope this iron infusion tomorrow helps with energy. Did I even mention that here? My ferritin was very low. The only reason it was discovered is because that new primary has orders in to have my labs drawn every 2 weeks by my home nurse!
NOBODY HAS BEEN TRACKING MY LABS regularly this entire time.
It’s so disjointed, the whole system. I have to call here to find out about the schedule, another number to determine what the fee would be, another to find out what I need to submit. It’s bananas! And these are hospitals that are used to having people fly in from everywhere.
This isn’t how a person should have to live.
I feel like I dreamed about my dad last night but I can’t remember! Ugh, it’s one of those on the tip of my brain things.
I was planning on reaching out to some of his friends this week, sometimes reaching out is so hard. I have one of my dearest friends about to start school as a teacher, and I really want to talk to her. But then I go to the phone, and I don’t know if I have the energy to chat. I hate that. I know I’ll feel better when the weather cools off. And hopefully the iron….
I guess maybe it’s a good thing that I’m going away with bestie on Wed and hopefully out of town next week. NEXT WEEK OMG what was I thinking? I can’t do a 3 day trip by myself? What was I thinking? This is insane. Omg. Why why whhhhhhyyyyy did I schedule this. Do I just go for it? If something really does go wrong….
It’s not like in the movies. I kept thinking that as I was watching my dad die. It’s scary and chaotic and there was not philosophical conversations about life, or any of that shit you see in the movies. Maybe other people get that if it’s a slow death. But I’ve heard enough stories….
This is why I like to talk about death and all the stuff around it, because I NEED for people to be able to talk about it. It’s too hard for me to leave this entire section of my existence - my precarious mortality - out of my story or a conversation.
I think I felt nauseous and sick the other night because food was stuck in there. I think I mostly fixed that? I don’t know. I need to start writing down what’s happening each day - here or elsewhere. I’m worried if I type it in here, I’ll leave stuff out because I’ll feel embarrassed.
What if I waited too long to do any of this? What if I can’t get to the right people in time?
What if this is it and I just need to keep writing and sharing my stories so a bit of my life carries on?
What if I can’t get in to see that surgeon for months?
What if I lose the last of my eggs?
What if I have to get a port and go on TPN?
What is the line of quality of life for me?
That friend who died at age 41 had some sort of appendix cancer or something very unusual. She worked down at Ground Zero a lot more than me. She was convinced that led to her super rare cancer.
When she died, I read that she’d gone in for surgery and they found a bunch of tumors in there, so they closed her back up and asked her what she wanted to do. Something like that.
She chose to say goodbye.
Where is my line?
How do I explain to these people around me that I may not get another summer to travel with them? How do I explain to anyone that this may be the last birthday I celebrate?
How do I convey this to the kids in a way that doesn’t scare the crap out of them or scar them with guilt? How do I make sure that my time with them is quality as possible?
When I’ve barely been able to get out of bed for so many days this summer?
I don’t know what I’m saying in here half the time, I have to go back and read through. It’s not as intense as I think. Or maybe it is. I met with a young person who is helping me come up with a social media strategy so I can get my medical case out.
The only things I can do now is share myself in a way that helps ME. It’s so the opposite of how I’ve lived my life, always catering to people around me.
But I have to do it this way. I can’t go online with the sole purpose of becoming an influencer!
Do these people that ignored my pleas for doctor referrals all winter realize what they did? That by hoarding contacts, they may actually shorten a life? I wasn’t able to help my dad…it’s a ripple effect. If I can’t get my motility meds because my doc is having his own medical struggles or whatever was going on, then…..
Walking the world in a medically fragile body in THIS country is terrifying. People collapse and aid cars are called - they end up with a $200K ER bill.
OMG I need to find something that will calm my brain. I’m spiraling. I’ve got to go.