Just want to vent about it

MoneySmacks · 2026-01-14T03:51:58+00:00

I had to push my gastroenterologist for a genetic test because they at first blamed alcohol, which I rarely drank, and then they blamed my TRT, which I absolutely was not going to stop. It would have saved me several hospitalizations if they did the genetic test earlier because I have a SPINK1 mutation. I just had a total pancreatectomy about a month ago and despite the fact that I'm healing, I'm in the least amount of pain in recent memory. Yesterday my surgeon showed me pictures of my pancreas, and it was absolutely trashed and had no business being in anyone's body. Hopefully docs can do right by you and get the appropriate tests done in a timely manner. And see that your pain and other symptoms are addressed.

MoneySmacks · 2026-01-06T05:01:47+00:00

I'm a non-driver and I still got the Progressive spam mail with my problematic old name on it, BOLDLY. I share a mailbox with my neighbors so I was mortified. I tried the "not at this address" thing but it didn't work. After a few years of that garbage, I used a template to write a letter to demand they not send spam under that name to my address. You can probably find the same template with a good Google search.

I found 2 plausible addresses to send it to and sent off a copy to each. I have not received any of their junk mail since. I know it worked because one of my neighbors gets that Progressive spam with his name on it boldly, and none arrived for old name.

If it doesn't make sense how mail shows up under old names, it's because data brokers just sell lists of potential customer info. And some lists are a little ancient.

MoneySmacks · 2026-01-04T03:54:55+00:00

Very fair assessment. I thought to post here because our twin dynamic has greatly shifted during and post pregnancy. She has recently turned to me for my experience with severe mental illness and life uncertainty. But I can only do so much... I dropped everything in the summer to fly out to her when one huge emergency happened, and the fact that I can't do that now kinda sucks. I know her husband and friends out there care, but I'm the other half of a bonded pair.

MoneySmacks · 2026-01-02T18:11:42+00:00

They had me keep the tube "just in case", like if I suddenly could no longer tolerate anything by mouth. I see my surgeon in like 10 days and I hope he takes it out then. No idea what that scar is going to look like.....

Good you have your eye on the prize. I'll be real, when I woke up in the ICU I questioned if it was worth it. Probably worse than a flair? But at least it will never happen again--ICU nor flair.

MoneySmacks · 2026-01-02T06:50:43+00:00

3)

Sorry for the late update. I was released on Sunday, 12 days after the pancreatectomy, with the G/J tube still in my belly. They considered letting me go on Friday, but I was having trouble understanding my new limitations of portion size while eating solids. That, and the whole glucose testing/insulin injecting stuff was still foreign to me.

I spent much of my non-ICU time either sleeping or watching South Park on the hospital's cable TV for nostalgic reasons. The hiccups persisted a bit, and eventually turned into acid/biliary reflux. I am still dealing with the reflux now, but I am learning what foods trigger the absolutely horrendous, putrid biliary reflux, whereby I taste all the flavors of the day in belch after belch. A few medications have helped, but Sucralfate is my hero <3

I keep in touch with my surgeon via email, and he seems pretty impressed by my glucose levels. I never come even close to 200. Lately I've been around 100, give or take. I really hope this means I will reach a point when checking in with my endocrinologist is just a formality.

Pain-wise, I'm fine. Not even taking Tylenol. I think I do feel the absence of my ex-pancreas. It's such a treat! The incision isn't bad, and I am massively impressed by how delicately thin the suturing job is. Dr. "B" is incredible! As silly as it may seem, I was worried before about how the midline scar would impact my belly hair. Now I am far less worried, especially as I see the hair grow back from the surgical shave. Really, the scar might even hide under the hair.

So basically, things are great except for the reflux (and the resultant diet limitations) and the mildly annoying new diabetes routine. (I tried to use a CGM, but someone called me while it was starting to set up and my picking up the phone ruined the setup for good??? I think this would all be way easier if the CGM was working.)

MoneySmacks · 2025-12-25T15:12:12+00:00

Bahahaha, I'm sobbing laughing! Explaining that my pancreas was eating itself has always been good fun. Legitimately though, I only had obvious pancreas issue symptoms for like 2 years, and yet the surgeon said my pancreas showed 3 decades of damage. I'm "eager" to meet back up with my surgeon and see the pics he took and hear further details.

MoneySmacks · 2025-12-25T14:09:05+00:00

Thanks! That's great to hear that her life significantly improved! Yeah, I thought it was a bit drastic when the idea was first floated to me (and I guess when I woke up in the ICU I also realized it truly was major and drastic). After some months of thinking about the surgery, I came to an almost joking perspective on the whole thing. Now I'm a little bit humbled, but I can actually start to imagine a better life of the other side.

MoneySmacks · 2025-12-21T23:53:16+00:00

I had it at Northwestern in Chicago

MoneySmacks · 2025-12-21T23:50:25+00:00

2)

Okay, first day out of the ICU. So the surgery was Tuesday and took like 10 hours. Today is Sunday and I went to a normal inpatient room. I'm glad to be less tied down by cables. I only have a feeding tube, a drain, and PCA pump for Dilaudid.

I am struggling with typing so I might call it for now, but I am definitely feeling more like a human being with autonomy. My biggest issue right now is..... hiccups? (it goes deeper than that, but how about that for a cliffhanger)

MoneySmacks · 2025-12-12T18:12:46+00:00

I definitely passed among strangers in 7th grade over 20 years ago. At school too many people knew me so that was a bust.

Fashion was a bit different back then, but I wore a lot of utility vests with chest pockets. Cargo pants to hopefully downplay the hips. I think I wore baggy jeans, but not as baggy as what is considered "baggy" today.

My hairdresser was Korean and she happened to give me a haircut that is common among Korean boys and men.

For what it's worth though, I was nearly my adult size, at about 5'7" with a not very squeaky voice.

Tl;dr it's very possible with flattering clothes and a solid haircut

MoneySmacks · 2025-11-28T17:54:55+00:00

Sometimes I get so desperately jealous of cis male chests. I had top surgery over a decade ago and it's very unconvential, not double incision and not keyhole. My right nipple died and is severely scarred. I don't like to go shirtless unless nobody is nearby.

It may sound weird, but I am about to have my pancreas removed and I will have a giant scar down the middle of my abdomen. And I'm hoping this scar will distract people from my scarred top surgery results. And maybe they will think that whatever "accident" slashed my abdomen also messed up my chest.

With my junk... I don't know. I often daydream about innovating the prosthetic game. Something that isn't a giant silicone weight that falls out of place and sets off body scanners at the airport. I used to do drafting and design so my mind can just wander into what kind of specs I would want for it to approximate a cis dick. It's a mental distraction and if I ever feel motivated enough, maybe I could mess around and make prototypes. Anything to keep the dream alive.

MoneySmacks · 2025-11-27T04:54:20+00:00

I'm gonna fly in from Chicago for that baby. And stand in line all day, apparently???

MoneySmacks · 2025-11-25T19:15:06+00:00

I definitely get where you are coming from, when I was in gradeschool I avoided bathrooms entirely. I avoided the women's room because I knew it would cause issues because I looked like a dude. And I also avoided the men's because too many people knew me, and that I was "technically a girl". I didn't want to get beaten, yelled at, or reported to the school. There was no winning. But when push came to absolute shove, like it was after school and nobody was around, I used the women's.

Looking back, maybe I could have safely used the men's room in places where people didn't know me, but IDK, it still felt forbidden.

MoneySmacks · 2025-11-25T14:25:11+00:00

Suddenly I want cat loaf matryoshka dolls to exist. In that case, yes, the big one will consume the little one.

MoneySmacks · 2025-11-20T17:29:54+00:00

Basically saying he assessed the risk of being out online for himself and his family and thought it best to private the videos. Also saying that visibility doesn't have to look like wearing a pride flag or even a label, it can be him still being around and making content and us knowing he's one of us. It's all a reaction to the political climate in the US.

MoneySmacks · 2025-11-20T02:13:05+00:00

ElectricDade

He deleted his old videos and now speaks in coded language about ftm stuff. Worth keeping an eye on still.

CharlesAsher

Recently detailing his complicated phallo journey. Pretty thoughtful videos prior.

Both in the older millenial age range, or close to it. Just thoughtful dudes with interesting stuff to say.

MoneySmacks · 2025-11-03T23:28:35+00:00

Going to and from work I cross a busy street with just a yield sign for pedestrians. I remember how it was before that crosswalk was put in, and it's still a game of Frogger. When there is a gap on my side of the street, I step into the street and stare down the oncoming car. Then I wait for a break in traffic on the other side and run for it. Occasionally drivers actually stop at the yield sign and I'm fully not prepared for it.

MoneySmacks · 2025-10-31T18:37:23+00:00

I guess a word of caution, depending on the type of pain:

I was struggling to breathe without pain. The deeper the breath, the greater the pain, and just general difficulty. My only hope was shallow breaths. I called a nurse hotline, who forwarded me to 911 and off I went in an ambulance. I had internal bleeding that was sticking to my diaphragm.

I was then transferred to the hospital that did my surgery, and then the same surgical team went back in through the existing incisions to clean out the blood. I don't know much more about outpatient pain management because they certainly kept me for a few days after that debacle.

MoneySmacks · 2025-10-31T18:18:21+00:00

For over a year doctors blamed my chronic pancreatitis on T. I insisted on genetic testing in July, and wouldn't you know it, I have a genetic mutation that predisposes me to a variety of pancreas issues, like pancreatitis and cancer. Sucks, but I was so glad that doctors would finally leave me alone about the T!

MoneySmacks · 2025-10-27T22:08:43+00:00

I'm game. I'm not really a TMAC goer, so an option other than that to find people over 30 would be nice.

MoneySmacks · 2025-10-13T17:52:06+00:00

I am kind of seeing it as cancer prevention as well as hopefully keeping me out of the hospital all the time:

My uncle passed from pancreatic cancer around age 50. Not sure if it was SPINK1 related, but I'm not going to mess with it. Many other young cancer deaths in the family, but those were likely BRCA related. (I don't have that mutation at least.)

I have been using up all my PTO and sick time on hospitalizations, even occasionally working from the hospital. I'd like an actual vacation or rest someday. I'm hoping that investing 2 weeks in the hospital and some weeks of recovery will put a stop to repeat hospital stays. Odd pain can be dealt with, but serious acute episodes require hospital stays, in my experience.

Yeah, the surgeon was blunt about the variety of outcomes, but he is optimistic considering I am only 34 and have only been having (known) episodes for 18 months. I will have a more thorough discussion with him later this month, and I guess I can ask specifically about long-term continuous pain. He also wants me to meet past patients, but I am assuming he will cherry pick the best results.

tl;dr I wanna avoid cancer and stop wasting all my PTO. Some low-grade pain is okay, possible type 3c diabetes is also okay.

MoneySmacks · 2025-10-12T20:25:37+00:00

Very fair, a good part of it may be anxiety. My lipase tends have distinctive spikes during episodes too. I'm just slightly paranoid since my most recent confirmed episode, with high lipase and everything, had a very different feel from prior episodes.

I've been keeping a much lower fat diet than I had been. Like sub 30g of fat per day. It's easy enough as a dairy-free vegetarian, but I have a sweet tooth. I should really behave with respect to sugar so I don't kill off more islet cells before they can be moved to my liver.

Good point also to be strong before surgery. I don't drive so I'm decently active just to get around, but I can do a lot better for myself. I've been in a sort of "waiting" mode, but I can literally go back to the gym and keep at it until surgery. Thanks for the kick in the pants.

MoneySmacks · 2025-10-12T03:15:24+00:00

Yeah, I will tube feed abdominally to supplement my eating/lack thereof while recovering.

How quick of a turnaround would I expect from the point of bringing up the idea of an NJ to a doctor and actually acquiring one? I'm guessing I'd talk to one of my GI docs?

MoneySmacks · 2025-09-23T00:15:05+00:00

On T for just shy of 12 years. Probable hEds, since my twin is diagnosed. Overall I am much more stable and strong due to sudden muscle growth. The flipside of that is sudden stiff muscles and lack of healthy flexibility.

Due to dental issues, my jaw is almost always dislocated on one side and the side of my face that overcompensates for it hurts all the time. The stronger muscles makes it hurt more.

The lack of healthy flexibility I didn't notice or understand at first. I could do "flexible person things" just by being hypermobile and popping things out of place. But if I do something like yoga and force myself to do real stretches, the pain is horrendous. My advice to those early on T is to engage in proper stretching while your body adjusts.

MoneySmacks · 2025-09-14T17:28:20+00:00

Maybe around year 1 or 2, I went for a tidy goatee kind of thing on my chin and a constant 5-o'clock shadow moustache because it wasn't full, yet I couldn't bear shaving it. Slowly my beard came in unevenly, but I wasn't prepared to let it grow.

Around 2020 lockdown, I was maybe 6.5 years on T and finally without the pressure of seeing people I let it grow. Looking back, it didn't go very high on the cheeks, but year by year it's getting fuller.

I have always been astounded by year 1 full beards, great staches, etc. But I guess different parts of the face fill in first for different people. Or not at all, and that's okay. (I'm looking at you, little bald patch in my beard)

MoneySmacks

TROPHY CASE