Posts Tagged ‘diet


Sausage D

Nurse Marcie says Sausage D is still good for cuddles.

I feel a little more normal again today. 

By which I mean as a person who can maybe function in society again — which is not how I felt for the last two days. 

But today feels a little easier. I am constructing full sentences again. I think my face is emoting. I am not completely paralyzed by questions. I am not constantly on the verge of crying. 

I still feel like a sausage. When I was admitted to the hospital I was 120lbs — the same weight I’ve been since I stopped eating meat and highly processed sugars after college. Today, I weigh 140lbs. I’m carrying around 20lbs of extra water from these fucking steroids and it’s making me completely miserable. I realize 140lbs is still a fairly lean weight for someone of my height, it’s not really the weight gain I take issue with. It’s the way I have no control over how this extra weight is swashing all over my body with gravity. Because I spent all day yesterday sitting up in a chair, all of it is in my legs and feet today. It’s hard to walk, it’s hard to bend my legs. It’s painful for my feet, shoved into my narrow shoes. The puffiness in my face makes it hard to keep my eyes open. The vanity of not looking like myself is secondary to the level of discomfort that I’m in. 

Not that the body dysphoria I’m experiencing as a result of this is a picnic either. 

I’m lucky my preferred aesthetic is on the loose-fitting side so I still have clothes that fit. I can’t imagine how much more traumatizing this would be for someone coming into this situation with pre-existing self-image issues. What a nightmare. 

Mom and I are currently sitting in holiday traffic trying to get out of the city after my follow-up oncology appointment. The traffic is actually not too bad by SF rush hour standards, but Mom doesn’t believe me, haha. We’re both starving and pretty irritable. In typical doctors office fashion, they asked me to get there 15 minutes early (so I was 20 minutes early), then my doctor was 45 minutes late. After talking about how much my life is going to suck for the next 6+ months, I got to watch someone arbitrarily schedule the next 6 months of my life in a way designed specifically to undermine my career, then we got to wait another hour so I could get my hormone injection (which hurt, I still really hate needles you guys). 

We’re starving, I’m late taking my afternoon meds, and we’re trying to beat people to my house. It’s a rough day. 

But! Besides, Sausage D, I feel pretty good. My energy is up, my hemoglobin is up to 6.9, I slept pretty good last night, and today I get to take a shower! A shower in my shower! I get to wash some of the industrial strength adhesive off my neck and hopefully downgrade to a less intense bandage. My fancy paramedic sister will be around for this to make sure we do a good job. I put on real clothes today and left the house and did human things. 

I spent a lot of time last night cross-referencing my potassium, sodium, and protein lists and populating a spreadsheet that will be the foundation of the diet-tracking tool I’m building. They bumped up all my limits a little bit from what they were in the hospital and I think I’ll be able to figure out this diet thing pretty good and not starve to death. Tomorrow will be a challenge with Thanksgiving, but my family continues to be extremely supportive and accommodating and I think it’s gonna be pretty great. Just gotta watch the salt! 

Oh look, drawers full of things I’m lucky not to have! O.O


got some wins

Everything’s coming up D today you guys!

I’ve scored three major victories:

1 – I’ve negotiated snacks in between meals!

This low-potassium diet is no joke. EVERYTHING has potassium. I am on steroids and I am starving. The kitchen caught on that I’ve been hoarding anything I can to eat ¬†between meals by asking for extra — usually saltine crackers and applesauce are the things I get away with. The dietician visited me again today, “Are you hungry between meals? Would you like me to organize snacks for you between meals? Cheese and crackers after lunch? A PB&J before bed?”


I’m simultaneously wasting away and bloated. My body doesn’t remember how to process white bread, apparently. I’ve eaten meat the last two days because I cannot subsist on bread, cheese, and green beans alone. I’m a hungry person. My family doesn’t call me “Snacky” for nothing. Please feed me.

If a PB&J actually happens, I might cry. I miss peanut butter. (Nuts are high in potassium but one of my favorite protein sources.)

2 – I’ve negotiated walks outside!

So long as I don’t leave the hospital premises, I am permitted on the terrace. I haven’t had sunshine or fresh air in 10 days, so I’m really looking forward to this. Plus, it’s a beautiful day in SF today!

3 – I don’t have to collect all of my business anymore.

By “business” I mean poop. No more specimen collections for the time being, unless I notice something weird. I get to flush myself again like a grown toilet-trained person!

In other good news, Josh was singing when he visited today. He’s still optimistic about my numbers now that they’re finally starting to trend how we want. We’re still all pretty confused as to how my numbers can be so bad and I can still be so high-functioning. I should pretty much be in kidney failure, but I’m still basically¬†asymptomatic. I should be dizzy, I’m running on like less than half the blood of a normal person, but I’m walking just fine. My body is weird.