I don’t take a lot of photos when the pain is bad. I’m just not in the mood. I feel like I’m pretty expressive - or at least I can see it in the photos - and I don’t like to be reminded of the pain. I also don’t like taking a lot of photos when my weight is down. It’s sunk down several times over the last couple of years but I managed to pull it back up. I rarely posted photos of myself during those episodes.
The reason I took all those professional photos last year was because I liked my weight then and worried I wouldn’t be able to keep it there.
I like looking healthy.
It’s possible I will have more control over that when / if I’m on TPN. Total parenteral nutrition (TPN) “is a method of feeding that bypasses the gastrointestinal tract. Fluids are given into a vein to provide most of the nutrients the body needs. The method is used when a person cannot or should not receive feedings or fluids by mouth.” - Google)
One of my registered dietitian friends - I have a lot of them because I’ve been in the field for so many years - has been recommending TPN for a long time because it bypasses the gut and would enable me to get nutrients on days that I can’t eat.
From what I understand, you can be on TPN and still eat a little too. Otherwise, I’m not sure I’d do it.
I don’t think I’m at the point where I’m ready to give up eating altogether. Plus, I’m not sure how long I can survive on TPN alone.
But hell, I can’t survive like this either….
It has sounded terrifying for the past year or so when she has been advocating for it. The main risk is liver toxicity from long-term use. It could mean blowing out my PICC line more often as well. I’m sure there are other risks, but I don’t do a lot of medical research on the Internet anymore.
For two reasons: my brain has trouble taking in new information due to my short-term memory issues. And it scares the fuck out of me when I read scary shit.
Better to just not read it and let my trusted friends sift through the information and pass it along to me. It’s ceding a lot of control which isn’t usually my cup of tea. But I have to.
My mental health almost feels more fragile than my physical health these days.
I’m worried I’m not making good decisions. I’m so vulnerable right now, I have to make sure I do everything I can to protect my psyche and emotional well-being.
I really thought I could find a way to improve things. I really did. This fucking medical system. ARRGHGHGHGHGGHGHGHHG.
Is there anything greedier than people profiting off of other people’s pain?
When I was sick with the inflammatory bowel disease at a young age, I made a promise to myself that I would never do work that created money from hurting people. I’ve mostly stuck to this promise, which hasn’t been easy.
At times, I would say fuck it and apply to work somewhere that may have not been evil incarnate but didn’t exactly align with my mission to try and make the world a better place. Like I’ve said in the past, at my core, I’m a pragmatist.
I did need to make a living. Or, at least I CHOSE to make my own living.
Sometimes, I feel this very subtle but incredibly strong judgment from certain communities: if you’d gotten married, done what you were supposed to do….you wouldn’t be in this position….
Ha! As if that guarantees anything. I learned at a very young age that being partnered doesn’t guarantee ANYTHING. I know some incredibly wonderful caregivers who take such good care of their sick partners.
But for every one of those stories, I’ve heard so many where it didn’t work out that way.
I never know where I’m going to end up in these posts. I have one concept that I know I want to share - fear around TPN - and then the writing takes on a life of it’s own.
I have a lot of fear of letting people take care of me, mostly because it’s so uncomfortable and new. I’m working on it! I know how much I enjoy taking care of people so I remind myself that we all can take turns. It feels good to take care of other people. Why wouldn’t I allow others to have that feeling that I also like?
On the plus side, TPN would keep me alive! It would allow me more flexibility. If I’m in a lot of pain - like I am today - it would mean I could still be nourished without adding more pain. It would also allow me to travel more easily. And I don’t mean travel for pleasure, though that would certainly be a welcome respite!
I can’t keep my eyes today. I did a lot yesterday. I walked outside with a friend which was so lovely. I hate being trapped indoors at this time of year. It’s really the only time of year that I can walk outside comfortably. In the summer, I dry out too quickly to do a lot of outside walking. And the winters in Seattle…my goodness.
What if my gut shuts down for good?
What if I never get to eat solid food again?
What if there are complications that I can’t anticipate?
So many decisions to make with such a fuzzy mind.
I think this doctor will come through for me. Then I’ll have to make the final call.
I can’t think about surgery until I get stronger anyway so that’s out. Plus, nobody knows what to do with me anyway. I still can’t believe the one surgeon who they send all the tricky patients to is also one of the surgeons that told me he wouldn’t operate on me because I’m too complicated!
The TPN is the least invasive way to keep me alive so that I can figure out my next move.
Sometimes I see a baked good and I want to shove it in my mouth so bad. There was some sort of zucchini bread at the coffee shop yesterday.
We used to have a garden when I was little and as every gardener knows, zucchini is an easy one to grow! My mom would make a million loaves of zucchini bread and store them in the freezer. We didn’t have much money when I was young so there was always a ton of frozen things like that.
I would warm up a piece of the zucchini bread and slather it with butter. I put butter on everything as a kid.
After studying nutrition for many years, I concluded that if someone knew to take me off wheat and dairy as a little girl, my entire life would have played out differently.
Why hasn’t anyone discovered how to switch bodies with someone, even temporarily?
Oh my. What I would eat if I could have one day with a regular digestive system.
Sometimes I forget! It’s the strangest thing. I’ll walk by a restaurant and my knee-jerk reaction is: oh that looks like a good place. Then it hits me. No, no, no.
I have to tell myself no so many times a day. Over and over and over again.
I need to take a nap. My entire family is coming over soon. I don’t think I’ll have much energy to visit.
I don’t know if this TPN will come through. But for the first time since my friend recommended it (when I honestly thought: naahhhhh I’m not doing that), I think it sounds like a relief and not awful.
It’s just too painful to put much food inside of me now. I didn’t eat any eggs two days ago. Yesterday, I had three with avocado and the pain is so bad today.
Like I’ve said, I have really high pain tolerance, but damn. Even I have a breaking point.
I’ll explain the pain another day - there are several different types - I’ve been having people ask me what it is exactly. I’ll have to think of a way to explain it. I highly recommend NOT having twisted intestine pain as part of your human experience.
Pain medication slows the motility which is already a problem for me - and I also don’t want to become an addict - so I don’t take pain medication. Plus, they make me loopy and I like having my brain as sharp as possible. No. I NEED my brain as sharp as possible. It’s necessary for my survival.
The pain is a messenger. This is something so many people forget. Pain tells us what’s going on with our bodies. Gives me clues, advises me on my next steps (no more solid food for a couple of days!).
In our culture, we’re constantly trying to suppress pain. I know. I’ve done it with emotional and mental pain for most of my life.
Now, I let it all out as much as possible. I don’t have the bandwidth to repress it anymore. Plus, it’s so fucking unhealthy.
The one thing I do have a wee bit of control over is my mental health.
As the buddhist saying goes: pain is inevitable, suffering is optional.
I can’t change my physical circumstances much. But I can decide how I’m going to manage it in my mind.
Getting as healthy as possible in my mind feels like the only chance I have to get through this journey without having a severe psychic break.
I feel so grateful that there are so many people out there, online and in person, who are so open about their mental health struggles, and what they’ve learned. I gain so much wisdom from their sharing.
That’s why I try to share what I can too. I couldn’t get through my own hell if I hadn’t had some brave people before me sharing how they got through theirs.
There are so many words that wouldn’t come to me while I was writing this. I have a different way that I want to say something but I can’t do it. My sentences end up messier than I’d like. It’s so frustrating.
For any grammar purists, reading these posts must be like torture.
For now, I sleep again. I always pay a price. For a walk outside. For eating an egg. For taking a night off from stretching, etc.
Always a price.
Expensive, being sick.
Yet, I’m supposed to figure out how to make a living since the government gives us enough to only live in poverty.
Sometimes, I think this sick world is what makes me sick.
We’ll save that for another day.