Be so f*cking for real right now.
\Post05\ 02.01.2025
There is still time to go to the next post... Here is a picture of some other things I baked to give you time to click away.
A s'mores cinnamon roll .....
A black garlic and rosemary sourdough .....
An angel food cake cupcake with strawberry vegan buttercream frosting and fresh fruit .....
I DID NOT WANT THIS TO BE A POST BUT HERE WE ARE.
So – this is going to be a short long story time and rant session because I need it right now (so apologies in advance).
I hope you’re all doing as well as you can be right now, considering… you know.
It’s me again, still trying to figure out what is actually happening. I am going to preface this by saying I have already been to therapy this week, but needed something else to help me get through this spicy situation right now – writing it all down.
I have not worked since Tuesday, January 7th. Yes, that is over 3 weeks ago. So the funny thing about this is, I was hospitalized for about 2 of those weeks for two separate things at two separate hospitals. The first hospital stay was local to me at a research hospital for my always inconvenient blood sugar swings. Essentially the care team explained I was producing too much insulin in certain situations, causing swings in my blood sugar levels. I did not even have time to celebrate this breakthrough! 😩
However, the physicians did not understand why this was happening and wanted to experiment with a medication to test its effects on my insulin levels. In short, they gave me meds for something I don’t have but because it is a similar disease process, they hope it will work.
SPOILER ALERT: THERE WAS NO RECOVERY
My mother, who I was staying with, bless her heart, had a total knee replacement 36 hours after we arrived at my childhood home. And you know what that means? Taking care of someone with limited mobility while I’m trying to stay on top of a new medication schedule and managing crazy symptoms – sounds fun, right?
So instead of focusing on recovery and mitigating medication symptoms, I’m focused on making sure my mom gets to the bathroom okay, not sleeping because I need to make sure she gets her medication on a proper schedule, refilling ice machines, warming up food, making sure she’s actually eating and drinking, and trying to keep her from having unrealistic expectations about healing after such a big procedure. Did I mention that I also could not work from home during this time? Guess what happened. I’m being so serious. Guess. What. Happened.
Funny story again, I lasted 4 days. Four f*cking days before I was in the hospital again. From “doing too much” I guess, my feeding tube decided to become folded and twisted in my intestines and stop functioning. This means: my medication schedule – f*cked. My mental health – f*cked. My road to recovery – f*cked. Oh and my blood sugar – totally f*cked as well, yes.
We’re going to skip the ER doctors being completely confused about how I have hypoglycemia without a tumor or diabetes and how my blood sugars don’t seem to ever stabilize for long.
Fast forward to my admission. The absolutely kind and wonderful ER doc said they would do everything possible to acquire the correct feeding tube to replace mine (did I mention it was just replaced 6 days before?). Loved him; I would totally recommend this man as a physician and trust him with my life. The day after I was admitted, my care team came to my room and said, “hey girl, we got your tube. Everything is going to be great. We’re going to try to fix your tube first, and if it that doesn’t work we’ll just replace it, don’t even worry about it.” I’m of course like hell yeah, thank you Luke Wilson (my hospitalist looked just like Luke Wilson and he was also the kindest, most understanding person and took all of my concerns seriously).
Guess who did not have the right tube? Guess who refused to look at the note in my medical record detailing the proper tube size and length for my body? Guess who placed a comparable tube in my hand, had me sign a consent form saying this was the tube to be placed and then did not place it? Guess who said it was “impossible” to guarantee my NJ tube would actually be an NJ instead of an NG despite every other physician being able to do it for the last 2+ years? Guess who left the same tube inside of me even though they could not advance it, and was aware that is was unusable because it was in the wrong position? Ope, guess who also said I was not throwing up blood after the procedure, despite the nurse and my family witnessing it, and the nurse taking pictures of the blood explaining that it was in fact blood? You’ve guessed right – the GI doctor on staff.
When she came into my room, I was on the phone with my partner and placed my phone on the bedside table. THIS WOMAN PUSHED THE TABLE WITH MY PHONE OUT OF REACH FROM ME (AND MY PARTNER OUT OF EAR SHOT), AS IF SHE WERE GOING TO EXAMINE ME FROM THAT SIDE OF THE BED, AND WALKED TO THE FURTHEST PART OF THE ROOM ON THE OPPOSITE SIDE OF THE TABLE AND PROCEEDED TO HAVE A CONVERSATION WITH ME.
Now, I’m not going to say it was intentional, but it seemed intentional to me…
You know what is worse than the GI doc eventually saying, “I actually don’t do these often, so I just did what I felt was best”? This woman said, “Next time you should go to your home hospital to have your tube replaced the way you want and bring extra feeding tubes with you to the hospital.” She then accused me of telling my family that she took out my current feeding tube, rubbed feces on it, and shoved it back down into me.
Obviously I never said that, because I would not know what she did; I was asleep for the procedure...
It was explained to me that she removed the tube, cleaned it, tried to remove the bend, and put it back in.
Now when I say it took the strength of my entire family line to keep me calm after she accused me of lying on her and feeling emboldened to talk to me any kind of way, especially after the table incident…
- I called the hospital ahead of time asking if they performed this specific type of procedure (they said yes).
- I was admitted through the ER. Meaning emergency situation. I came to this specific hospital out of necessity, not want.
- My “home hospital” was an additional 90 minutes away in rush hour traffic.
- My regular physician who would have performed this procedure was on vacation until the following week.
- Last but certainly not least, I cannot have extra feeding tubes on my person at all times because I am not a medical supplier or physician – I cannot have this equipment with me???? Like wtf???? How would that even work????
This woman then proceeded to tell me it was impossible for the hospital to order the correct tube, despite my “home hospital”, which is in the same system, just downtown, replacing my tube with the correct model routinely. I also attempted to explain (she had stopped listening to me at this point and said we just weren’t going to continue this conversation and that she was going to document that I refused treatment without explaining that I needed this specific tube for a reason and refused to document our conversation at all…) that it is common for my tube to be overlooked as it is not the standard size and often causes some confusion to physicians because it looks different from the smaller, traditional NJ tube. She refused to listen any longer and left my bedside.
But hey, guess what? While she was putting the tube in the wrong place and refusing to remove it, she found that my nasal septum had eroded so badly from continuous bridling (tying a silicone, wire reinforced tube around by nose to make sure my feeding tube does not become dislodged) that my nose was on the verge of collapse and I could not have my tube secured in that way ever again. And because of this, I needed a more permanent tube, a surgically placed tube directly through my abdomen into my intestine. She also said I would be ugly with a collapsed nose. So that was fun information to have.
We will talk about the surgical feeding tube placement in a different post because the way people think I’m an idiot and that I don’t care about my health is beyond me.
So, the following day the same GI provider came back to my room, fresh faced, wearing lipstick and dangly earrings, to explain that the tube was actually available for order, and they just needed to communicate with my “home hospital” to see what the model was - shocker. She said she “prayed all night about me” (While I’m an atheist, I do not look down on people who are religious because that is stupid to do. However, I was not impressed by this confession because of how horrible she had been to me at every interaction.) and would do her best to have someone who was more familiar with NJ tubes place my tube and try to have the right tube on-site within 24 hours. I was of course gracious and thanked her – I will mention that “Luke Wilson” was in the room at this time and she was acting like a completely different person.
In the end, a different GI physician who could guarantee my feeding tube would be in the right spot, changed my feeding tube and had me back in my room (without any bleeding, complications, or ridiculous pain) in less. Than. One. Hour. You read that correctly; less than an hour to replace my tube and send me on my way. Don’t even get me started on how they had my proper feeding tube on site for almost 48 hours but didn’t perform the procedure…
In summary, I was in the hospital for 7 days this time, without any source of nutrition besides sugar water through an IV for 6 of those days, experiencing blood sugar issues, being in extreme amounts of pain, not getting a moment to be by myself to process everything, and ended up with a bill totaling well over $40,000.
Now let’s get to the good part: because I was in the hospital for nearly 2 weeks and have been out of office recovering and restarting that terrible (hopefully will work eventually) medication, I have not worked in over 3 weeks. You know what that means? I have no money. That’s right – I cannot pay my bills or even afford to use extra gas to see my partner let alone get him a gift for his birthday that’s in a few days or valentines day in a couple weeks. This month I made less than the cost of my rent. Horrendous – I know.
So you know what I do? Empty my little savings into my checking account. Then, I ask my father for help. My father, who pays other people’s rent and other expenses because he is all about helping his children, would not hesitate to help me. So I did what any child would do: I asked him if there was anything I could help him out with to make his life easier and he pay me half of my month’s salary or just the cost of my rent for doing so.
I preemptively applied for emergency government assistance a week ago just in case things don’t pan out with my father.
I applied to be a shopper for Instacart but can’t do it because my car insurance doesn’t cover “commercial use”.
I’m looking for things in my house to sell, which might have to be all the books I haven’t read yet or sentimental gifts I received over the holidays.
I asked my boss if I could work from home, and she ignored me.
I’m just so confused as to why, by no choice of my own that I am in this situation? I would spend my last bit of energy trying to work so I can pay these expensive ass hospital bills, even though I know it would render me non-functional for days. I would at least have a more robust savings account if I didn’t have these random health emergencies so frequently.
Oh – another amazing thing about this fabulous time off is it has only been extended by this extra week because the doctor who can sign off on my ability to go back to work is on vacation and has not been able to submit the paperwork to HR yet. Very fun.
I was told to apply for long term disability, but those payments barely cover my rent (not even my bills) and would not even cover half of my moving costs if I were to “downsize”. My rent is extremely cheap for where I live. Most people pay almost double for a studio apartment just a few minutes down the road. And if I’m going to be spending an extended period of time somewhere, I need to be in a good space. Not a super fancy, high-end space, but a space that allows me to function well with this very annoying disability.
Anyway, enough of that...
After being continuously surrounded by people for 20 days, I’m now getting a moment to finally catch my breath just to have it knocked right back out of my lungs. No, I’m not okay. No, I don’t want to talk about it (any more than with this post).
If you need to, put your phone on “do not disturb” for a day. Take a moment. Breathe. Dissociate. Go for a walk. Meditate. Scream. Cry. Throw something; because, in the words of the wise prophet GloRilla, “at the end of the day, the day gotta end.” And you’ll be able to try something different tomorrow.
Love you all.xx ❤️
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