intentionallymyself

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

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.

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?

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.

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.