I wish I could find the words to convey what it feels like to feel 90 years old on the inside. To wake up and wonder how I’m going to find the energy to get through the day, which I feel most Fridays, wrecked from the week. I can feel it at any time, though, depending on how much food I’ve eaten or if I’ve done too much in prior days.
I slept 12 hours last night. Which you’d think would be common for me. However, my biochemistry is such a mess that I often sleep like an old person. I wake up often and rarely get past 7 or 8 hours - and I realize that a lot of old people would say: that’s a long night! I know. I get it. I often sleep 5-6 hours per night. I rely on a LOT of herbal remedies to sleep beyond that. Now, for some people this is plenty! I have one family member who rarely gets sick and doesn’t need a lot of sleep.
I’m not one of those people and never have been. I used to be a very, very hyper person - most people who work in the culinary field are energetic types. You can’t do that job unless you’re someone that can handle a lot of manual labor. For some reason, this isn’t always obvious to people who glamorize the field!
But I always ALWAYS needed a lot of sleep. Nine hours was my ideal. I’d barely sit still entire days. I worked on my feet in the kitchen or classroom for hours - often at different sites so I’d have to travel between jobs - did computer work, then would run at the gym for an hour. Often I’d do all that and still walk back to my apartment when I lived in Manhattan.
This is partly why people get so confused about me now. Let’s say my energy level was a 90 out of a 100 before I got sick and the average person is around 50. I dropped well below 50 which is a HUGE change for me. But compared to the average population, I’m still able to get some things done even when I don’t feel well. My dad competed in three Ironman races. He’s had three cancers, a stroke and is missing most of his colon and his entire stomach. The man still works every day, bikes, runs and we’ve only recently nixed Crossfit (c’mon Dad!). I have whatever he has - that ability to keep going despite pain and fatigue - you can’t do something like Ironman unless you have whatever that is. Extreme stamina?
I think they should study us. We have some genetics in our favor that help counter the shit genetic Lynch Syndrome gene.
But none of that matters on days like this. When I can’t keep my eyes open and my body feels sluggish. All my exercising isn’t just to help with digestion and motility. I have noticed lately how much I rely on it when I don’t feel good, or when I’m wobbly getting out of the bath. I use my upper body strength to get out of bed when everything is screaming inside to stay still. I feel like my outside athletic, muscular self can dominate the old lady inside: “Bitch, we’re getting up! This grrrrrl is only 47 and deserves to live a little. Deal with it!:
When I sleep for that long, I can’t eat beforehand because the food will just roll around and cause pain. I did, however, force myself to get up last night and made sure I had broth, a protein beverage and my powdered vitamin juice mix. I use a lot of my athletic mindset to get these things done.
I’m never sure if people understand how much this mindset ensures my survival. GET YOUR ASS UP JULIE AND DRINK WHAT YOU CAN. And the other part of me, the tired, sick patient wants to lay in bed and just doze off for days.
I’m pretty sure you don’t need to be a medical person to realize where that will go…nowhere good for me. No way.
I fight this feeling of “old lady” all of the time. The photo above is my two kitties who are in absolute heaven with my new life! They hated when I worked long hours and was rarely home. Now, they get pissed when I leave the bed for a few hours. Spoiled rotten. But they also deserve some credit which is why I included them in this post.
They ensure that I get up to feed them, that I don’t turn into a total slug. The kids do this too - my nieces and nephews. I can hear them upstairs and I can’t always get up to play / visit with them. Often I can’t take the pitter pat of their feet and I force myself out of bed.
(How many times have I written “force myself out of bed” in this post?)
There is a lot of forcing lately. Things are not good inside me. I don’t know if something is growing. Or, if scar tissue is wrapping around something, weighing a new section down, or something is temporarily twisted. No idea. After I saw how my skin looked after my IV bag yesterday - it went from gray to pink in a matter of hours - I’ve decided I will set aside my pride and let people pay for the IV bags weekly until I can figure out a way to get them cheaper. It’s so pricey!
But shit, isn’t my life worth it?
I’ve had to face so many issues around self-worth and asking for help. When I say I’m not the same person anymore and can’t be the old version, this is a big piece of it. But in this case, it’s a good thing. I NEED to be able to let people take care of me. I have a volunteer picking me up to take me to the doctors soon. She drove me to the IV appointment yesterday and I was afraid two days in a row would be “too much receiving.” She’s retired and excited to help. Today, I’m so fucking grateful she can get me to this appointment. She also happens to be a stellar companion - knows just the right way to offer help which is extraordinary. I was very, very grateful for her help and support this week.
I think I set up the volunteer sheet just in the nick of time. My goodness, I blew it on that California trip. I should have made sure I had people checking on me, even if I wanted to cancel them later. I should have at least had people on the schedule - I had a young woman who used to come clean and help around the house. I feel stupid now that I didn’t ask her to come by. I can’t go that long without help and support anymore. I must face that reality.
This is very hard on my ego, and my sense of self. My identity has always been so wrapped up in being fiercely independent. To feel like an elderly person who needs rides to the doctor at age 47?
ARRRRGHGHGHGHGGHH It’s so hard to find the words to explain it.
I remember after my surgery, I was so incredibly weak. My aunt and my friend, Megan had to help me take a shower! I couldn’t stand up straight because my wound was still healing. I had barely eaten in days / weeks because my intestines fell asleep after the surgery. Frankly, I don’t think they ever woke back up! But the doctors don’t want to hear that theory because then they’d have to face that their “life-saving” surgeries can cause a whole host of other problems.
“Well you’re alive aren’t you?” I HATE WHEN PEOPLE SAY THIS TO ME FYI.
Is sleeping in my parents basement and going to doctor appointments considered “living?”
Is feeling hungry ALL OF THE TIME truly “living?”
Is wondering EVERY SINGLE DAY what’s going to end my life really a “life?”
Is using so much brain space and energy asking myself what I should do next? How many eggs can I eat today? Should I do 1.5 bags today or 2 liters? Shoot I need to call that doctor back. And that doctor. And that practitioner. And did they send my labs yet or do I have to follow up with them AGAIN?
Often when I’m out socializing, I can chat and smile and carry on conversations while having this internal dialogue the entire time. It’s on CONSTANTLY. Is that pain going to keep going? Should I go to the bathroom? I just went and nothing came out even though I need to go. Should I order more hot water? The server seemed annoyed last time. Ugh. I hate bugging food service people for such odd requests.
I’ve noticed I’ve finally began to age like a normal person lately. Now, for a lot of people, this would probably be alarming. But for me? It’s a relief. I looked so young for so long, people thought I was exaggerating or outright lying about my health problems, in the healthcare system and out of it.
The grooves deepening on my face and the solid patches of gray in my hair are at least reflecting how I feel on the inside. I may change about feeling relieved at some point! But for now, I feel like I’m looking back at my REAL self, instead of a woman who doesn’t FEEL like me.
I look at photos from even a couple of years ago and I’m like how the fuck? But I know why. I ate so damn healthy for 25 years and always covered my face in the sun. We also have those Greek genes - I have them on both sides. My dad is half Greek (so is Jennifer Aniston). Greeks age well for some reason.
I can’t take all the credit!
But dang if it doesn’t cause me a ton of problems. It’s such a catch 22. The Internet likes pretty women. So I am well aware of the privilege and traction it gives me in that sphere. But in the medical world? Lord help me. They see a relatively healthy young woman - one that doesn’t even look her age - and fit too and they ASSUME I’m full of SHIT (I AM FULL OF SHIT HELP ME GET IT OUT PLEASE).
When I make videos of what I’m capable of physically now, that will impact perception for sure. I’ve always been fairly strong - that’s from both sides of the family. I remember my grandmas’ legs. Her calves looked like bricks. She smoked for years and as far as I know, never exercised a day in her life.
So some of this is just plain ole genetic luck. Jews gotta have some of that to combat all the other shitty things we inherit including generational trauma. But that’s for another day! That reminds me I need to contact my friend about talking on that topic for the podcast. This brain. Never stops. My body and brain are literally the worst match in history.
My home nurse will be here soon and I’m trying to be more organized so I don’t waste their time rummaging through my boxes looking for the right supplies. They don’t care, but it’s gotten longer because I really need to organize my medical supplies better. Not high on the list.
That’s another thing that I hate. My space gets so disorganized so easily. I see how slow the transition is from able-bodied regular person to this other person. One with tattoos, mohawk, messy house. It feels impossible to stay that other person.
Dang, though. What a fucking journey transforming into this person. Exhausting work on top of everything else. I’m glad to have this outlet here. It's another task to add to a long list of “musts” but I feel better sharing my real life. I feel like I’ve only been sharing little snapshots - well, that’s because I literally have shared only snapshots. On this site, anyone that’s interested can read all the gory details! And they can read it by choice. Facebook is a captive audience and I’ve never liked that. But I was tired and it was easy.
Now it’s time to push my words out further into the world. Whatever fear I have about that is finally smaller than the desire to get medical answers and find my tribe.
This past week, I’ve been feeling more and more pride at belonging to the disabled community which is an amazing feeling! They are such warriors! Man, are they tough and cool and wise. I’m such a fucking rookie. But I’m learning, listening, trying to pick it up quickly enough to start engaging more.
Now, I have to put an oxygen mask on myself. Dang, I keep leaving words out of sentences like I do on social media. What a terrible writing habit. Put AN oxygen mask on myself.
I need to end this. I can ramble endlessly. Podcast is well underway with 26 episodes! Blog is well underway here. Once this feels more solid, then it’s time for videos. I don’t really like being on video. I feel naked and weird and awkward.
It’s only because I need answers to my medical case. And strangely enough, the Internet likes naked, weird and awkward. Plus, if I don’t create projects that I can do from home, now that I know I’m stuck here for the time being, I will lose my mind. My projects are what make me feel like I have a future.
That’s a sad sentence isn’t it. There are about 10 blog posts within this post.
Time to say goodbye and meet up with my nurse. I love my nurses. Thank goodness for nurses. The unsung angels of the medical system. Keeping us alive and sane.