My doctor suggested I try logging my daily food consumption using a “diet” app so I can track my calorie intake. That seemed smart. So I slogged through the Android app store to find something decent (ugghh) and have been logging for about three weeks.
I am averaging 800 calories a day.
I am aerating 800 calories a day.
How am I still here, typing this blog post, doing stuff?
Spring allergies are not helping. I’m so congested, it really makes things like nausea much worse. And I’m growing more tired each week. I wobble more and stumble a bit here and there.
Something is clearly wrong with my lower GI system and fiber pills with a side of probiotics are not helping. They might be prevent it from worsening and they aren’t gross or anything, but seriously … this sucks.
I bought some new sweat pants from Old Navy this past month in a smaller size because very large droopy clothes do not make you feel good. So I got some bright colors – aqua, pink, yellow, etc – to cheer me up, too. Now they don’t fit. I have to return all of them. That’s sort of soul crushing in a way because I was so excited. On the bright side, I also bough three night shirts in a smaller size and they fit fine. I am dreading what happens when I pull out of my summer shorts. I can’t keep buying new clothes perpetually.
I put on my summer raincoat today for the first time and it looks like a tent. Even my socks are starting to be looser. Are my feet losing weight?
My world is so much smaller. I get up, drive Laura to work, drink a cup of coffee (with flavored creamer for calories), and read the news, check stuff online, etc. I take one or two naps depending on the day. I try to do some things around the house, but if I have a Zoom meeting or a medical appointment – nope. I need to conserve those precious calories. By 1 PM, I’m already worried how I’ll handle feeding my colony of community cats and drive to pick Laura up from the T and force myself to eat something for dinner. I force myself to stay awake until 10 PM or later so I am not up ridden with anxiety at 5 AM.
My friend Dok Harris sent me a case of Super Donuts made famous by his Dad, Franco, and they are literally lifesaving. I put all 40 in the freezer and eat one a day, most of the time, for breakfast. That’s about as close to cooking as I can get. I eat a lot of slices of cheese, a few crackers here and there. I like sweets so I’ll eat some of those if they are here. There’s one cupcake left from the weekend and I know I’m having a bad day because just the thought of eating it repulses me. I buy yogurt, granola bars, cereal, soup, fruit, the whole gamut of foods. But sometimes I can’t eat a whole container of yogurt. Or I forget its there. Or I know its there, but I’m not hungry. Or I’m a little hungry and know its there, but its not worth exertion to walk into the kitchen and get it.
Who am I?
I’ve been lifting 50 lb bags of stuff for decades – a must when you have multiple pets. Whether dry pet food or litter, I can manage one bag at a time just fine. Or I could. Now I have to ask anyone who comes to our house to carry them in. Sometimes I ask my neighbor, Anthony. We can buy smaller bags of food, but not the litter we use (wood fuel pellets. It is very demoralizing to feel actually weak. I’m not at an age where that should be happening. I carry laundry in Ikea bags instead of baskets and hampers. I struggle to pull open sticky drawers. I do not put away silverware or glasses because this weakness plus my hand tremor are not good mix.
My concentration and focus are losing steam. I reread things a lot. I rematch bits and pieces of tv shows and movies. I always have on subtitles. I just don’ worry about editing these posts unless they are important. If it gets to the point that you can’t follow along with what I’m trying to say, call my wife and point it out to her.
My world is smaller. I don’t go places. I ride along to places with Laura, but that’s not the same thing is it? I can’t just jump in the car and go to Target anymore and not because of COVID-19. I stopped asking for items placed on the Buy Not a Thing/Buy Nothing sites because I can’t reliably predict if I’ll be able to meet deadlines picking up those items. I don’t go to plays, I don’t go to shows, I don’t go to exhibits. And that is mostly because I’m just too weak to muster up the necessary energy, but it is also feeding my previous existing social anxiety so there are lasting effects to worry about, right?
Laura handles all the reviews now. I’m perfectly content to watch things on our tv and wait for things to be released in that format. Maybe I should start recapping ‘General Hospital’? That’s probably a bit more due to social anxiety, heightened by the Let’s Go Brandon jagoffs.
I’ve shared all of this before, but this is part of MY story and I want the record to reflect that I keep trying to get the medical establishment to help me while fending off the “eat Greek yogurt” advocates. I have an appointment tomorrow with a PA in my Gastroenterologist’ office. I was supposed to meet with the doctor last week, Laura came early from work to be with me and everything. It was a telehealth appointment at 4;30 and he never showed up. The office was closed so calling to inquire was useless. On Monday, they called me to reschedule for the end of April. I was like “I’m actually suffering here” and they gave me this PA appointment. And refused to explain what happened last week with the telehealth appointment.
This is the crap you put up with and this is nice doctor, a nice man and a very competent doctor. But he wants me to see specialists and I’m really struggling to find them. And no one seems to be able to help me find them. I mean I can find just rando doctors, but I really need trauma informed or what I say “really nice and kind and compassionate bedside manner” – those are not the same thing, but its the best I can do. There’s no registry of trauma informed healthcare providers. My horrid experience with Allegheny Health Network is till far too fresh for me to grin and bear another round of pompous jerks.
Oh, I recently got the bill for that fiasco where they put a chip in my body, didn’t give me the tracking device, and never followed up – they charged $18,000 for that. And it was paid by my insurance because it was completed. Even though it wasn’t. That’s quite a racket Dr. Blair Jobe has going on there.
Laura told me I have to stop telling new doctors that my throat was raped by a stretching device because it undermines my credibility. That’s probably true. But doctors know that procedures can cause trauma. They aren’t dumb. And it is a solid description of what happened. I’m not being flip, said the survivor of sexual violence. I’m the one dealing with nightmares and aftereffects, not that doctor. He got his money.
If you are struggling with similar issues, you are not alone. Being a woman living with mental illness who is queer is hard enough. Adding the possibility of a rare autoimmune disorder just tips me into the realm of “the disbelieved” so hard, I might hurt myself. But I’m not alone. I see people having similar experiences every day across the world.
So tomorrow, I keep trying to find a rheumatologist. And I have my appointment with the PA. And I have another business appointment that will require full attention for about 20 minutes – I already made my talking points.
And I will work very hard to consume more than 800 calories tomorrow, right after I order another case of Super Donuts.
OMG, I just learned there is such a thing as the 800 calorie diet. WTF?
Apparently, my capacity to ramble is still fully functional – LOL.
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