how long did you have symptoms until you were diagnosed and what were they?

also how was it living with a feeding tube? did you go to work/go out with it?

Hi! Thanks for your questions!

So, I had severe symptoms for about two years prior to diagnosis that progressively worsened. I'd get into really mid/upper right abdominal pain, I'd sometimes have a fever, sometimes not, lots of nausea and vomiting. I'd also get really dizzy, and I was prone to cold sweats.

Living with a feeding tube was hard. You don't realize how much food is everywhere until you're not consuming it at all. Movies? Popcorn! Mall? The food court! Bowling? Snack Bar! Hiking? Bring trail mix!

A friend once said to me, "if you can survive no food for three years you can stop doing drugs," and I was like, "I survived it because I had A LOT OF DRUGS."

As for work, no, but I did go to college with my tube, and I could pack it up. I had a small backpack to store it in with a built-in pocket that allowed the line to tuck under my shirt so I could bring it along everywhere. It was very subtle and easy to disguise. I did not work right after college as I had a lot going on medically, but a few years after the tube was removed, I did get into the workforce.

How did the cost of treatment not cause financial ruin?

Let's just say, my bank account looks very sad.

What’s your advice for those dealing chronic pain and trying to juggle opiate relief?

So first and foremost, my advice is to be kind to yourself. We live in a world where people are quick to judge for any reason without having all the facts. Friends, doctors, and family members tend to be most guilty of this. Even those that mean well.

Secondly, have patience and leave room for trial and error on what does and doesn't work for you. Notice what is helpful and write it down. Notice what isn't and write it down.

I know I'm being a little vague here, because I'm of the opinion that when it comes to treating chronic pain it needs to be approached from multiple different perspectives and I cant definitively say what will and what wont work, plus I'm not a doctor.

However, I do know that having knowledge about the brain science behind chronic pain is what ultimately ended up making the difference for me. I actually spend a lot of time talking about that science in this video: https://www.youtube.com/watch?v=-oHaaY5IwFk I link a bunch of resources in the the description box of that video that I highly recommend checking out as well.

Now mind you, I do know that my video on chronic pain might not appeal to someone who heavily relies on opiates, but to that I will say that the video isn't one that is anti-opiates. It is one that "Yes, opiates AND did you know xyz?"

The solution is often much more complex than just one thing or the other. If that makes sense. Some days certain things work for me and other days, those same things don't work and I have to do something else, it's a complex process that is frustrating and difficult which is why I say to be kind to yourself and have patience to begin with.

It's about celebrating the small wins along the way.

How do you cope with not having a normal lifespan ahead of you?

I have a chronic condition myself and might not live long, what’s your mindset and how do you keep moving forward?

How do you cope with not having a normal lifespan ahead of you?

Oooo! That's a good question. Personally, I actively bury my head in the sand and don't think about it. lol. Avoidance isn't my best coping technique, but it is the one that I choose to use when it comes to this. I also somehow managed to convince myself that with my luck I'll end up living to be a 100-year-old-grumpy grandma that doesn't give a flying fuck anymore.

I sent my best friend this TikTok video: https://www.tiktok.com/t/ZT8jcYsBu/ & she was like 50 years? You called me like that Saturday and I was all like [SHOCK & HORROR] "Did you just call me OLD!?"

As for how to keep moving forward, aside from blatant denial about the lifespan aspect of it, I ask for help and I tell people when I'm not doing well. I also explicitly state what I need, which sometimes is as ridiculous and simple as saying, "hi give me attention. I need attention."

And a good amount of dark humor helps.

Do your conditions shorten your life expectancy?

Because I have read about sphincter of oddi dysfunction in the past, and from my understanding it does not really affect life expectancy if treated properly

So, it doesn't directly shorten my lifespan, but the complications from the chronic pancreatitis and the strain that puts on my body increases my risk factors for an untimely death. In my early 20s I had a case of pancreatitis where I was hospitalized for 30+ days and at one point it was unknown if I'd survive it. So, stuff like that is where the untimely death worry comes in. I'm also high risk if I ever got pregnant, which now that I'm almost in my mid thirties it'd be very high risk because I'd be a geriatric pregnancy and pancreatitis is very dangerous for a fetus.

How close were you to ending it? What kept you going?

Very. Many times. However. What's always stopped me is that I became an only child after my brother's death, and I could never purposefully put my parents through that again. My cousin lost both her adult children in a two year span and seeing the fall out of that is another reason why that is not an option for me.

Have you seen the film "I want to Eat Your Pancreas"?

It's wonderful, and sad.

No, I haven't. What is it about?

What's your go-to tip to dealing with pain?

I don't have any chronic pain, and have never been hooked on opiates. I'm also a little baby when it comes to any amount of discomfort, and will pop OTC painkillers anytime I'm in any level of pain.

I know a big key is perspective, and the real tip is "live with 11/10 pain for a year or more" but I'd prefer to avoid that step.

You actually have 1/2 of the answer when you say:

I know a big key is perspective, and the real tip is "live with 11/10 pain for a year or more" but I'd prefer to avoid that step.

Your outlook on it makes all the difference. For instance if my memory serves me correctly, in different countries like Asia, giving birth is seen as natural and the pain is accepted as a part of the process, it's more honorable to tolerate the pain and its seen as temporary, so there its less likely for women to scream in pain during childbirth. They tolerate it.

Whereas in western culture, like America, child birth is known to be painful and scary so women are more likely to scream during childbirth and describe it as painful.

The perception that the women have going into before hand changes the experience of the pain. If you view it as a natural and necessary part of a the process, chances are you're going to handle the pain better than someone who is going into it scared of the process and pain.

Obviously that's a very simplified take on it, because pain is very complex, but it boils down to the perception of the pain.

I really don’t enjoy eating. Sometimes I imagine having a feeding tube would be awesome (obviously not really) but the thought of not having to eat and just having food inserted into me sounds nice.

1) Is there any upside to the not having to eat? Do you eat now and ever think damn, I miss not having to eat?

2) were you a intravenous heroin user? Describe your first intravenous heroin use.

3) how do you remain sober now?

Haha to answer your first question, yes. It was nice in terms of getting exactly what I needed in calories, not having to think about it and because it was medically necessary I paid $0 in grocery bills and because I'd met all my deductibles it was "free" because it was covered by insurance. I know plenty of people that have chronic conditions and their medication etc. etc. etc. is paid for or free once they max out their deductibles but they still have a grocery bill. It was a weird flex to have.

However, I will emphasize the downsides, every 4-6 months it'd malfunction and I'd have to visit the ER to fix it or get it reinserted. Mine was a jejunal feeding tube, so it bypassed my stomach, meaning I was always feeling satiated but hungry, like when you have a good dinner and "could go for desert" it was that "could go for desert" feeling at all times. If I went bonkers and cheated, it'd make me really sick, because eating a whole cheeseburger or bringing on food is not how you properly reintroduce food after not having any for months on end and that happened like 4 or 5 times when I had the tube.

As for IV use, sort of, I had really bad veins from all my medical situations so me getting me was impossible. I did try at one point and caused myself a pretty bad infection that I told my doctor was due to a cat scratch. Not sure if they believed me but I never went back to ask them if they knew I was lying or not. My tube was a close second to IV drugs because it bypassed my stomach and went to my jejunum meaning it was quickly absorbed into my bloodstream from my small bowel. I'd also had lots of IV experiences with medications in the hospital and I'm not really going to describe my first use, there's nothing productive that comes from romanticizing this stuff.

As far as remaining sober today goes, I'm connected with my local recovery community, go to therapy and have a close circle of friends that I can lean on when I need to and I ask for help when I'm struggling. Even if it's 'not that bad.' If that makes sense.

Why did you capitalize almost every word in the title but not all of them?

Why didn't you just use normal rules of capitalization?

Not sure? I used the rules of title capitalization versus sentence capitalization. LoL. I believe I used APA rules.

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No, but I also don't think anything belongs on pizza except for cheese. Like pizza with double cheese and a cheese stuffed crust is heaven. Anything else? Idk, but it's not heaven!

I like cheese like this kid likes turtles: https://youtu.be/CMNry4PE93Y?feature=shared