PROOF

Proof Picture Of Identity: https://imgur.com/mgqaiTB

Medical History Proof: Submitted to Moderators Privately

MY (SHORT) STORY

My name is Danielle and like the title says, I'm a chronic pain patient in recovery from addiction and I have a small YouTube channel. In 2013 I was diagnosed with Sphincter of Oddi Dysfunction which is a rare pancreatic disorder . It was so bad that I had a feeding tube that bypassed my stomach and I did not eat food for three years. I also have a history of Chronic Pancreatitis and Gastroparesis. Plus, I've dealt with spinal problems due to degenerative disc disease requiring surgery twice.

Unfortunately for me, addiction runs in my family, my brother had died of a drug overdose at age 20, and being exposed to opiates throughout my early 20s due to my chronic illness, I ended up addicted to my painkiller medication. I took my addiction to my medication many steps too far until I was using heroin. In 2020 it became clear that I had to stop using opiates and over the last few years I really worked hard to deal with not only my physical pain, but my emotional pain as well.

My YouTube Channel

Today, I live a much healthier life, and I made a YouTube Channel (youtube.com/@intentionallymyself) to discuss my struggles with mental health, the day I found out my brother died, what I learned about his death and my struggles with chronic pain.

It's my hope that by being candid and honest about my experiences with these topics that others can not feel as alone as they once did. It's really cliche to say, "if it helps one person then it's worth it," and I don't know if that's true, but I am passionate about these topics and want to share what has helped me overcome so many hurdles so that others at least know they're not alone in their journey.

Additionally, I don't know if YouTube will ever be a full time career for me, it really is just a passion project of mine. Especially since I was banned from Google Adsense (YouTube's AD program) over 15 years ago when I created a Carrie Underwood fan site and clicked on all my own adverts earning me a lifetime ban. Which, if you ask me is the silliest possible reason to be banned from that program, but I was a ridiculous 18 year old.

I have many. videos planned for the future and when I run out of personal topics I plan to do deep dives/documentary style videos on things that interest me, like the Sackler Family, Big Pharma, Mental Health Inaccessibility in the USA, Wealth Inequality, etc. etc.

My Most Recent Video

The video I'm most excited about and recommend you watch is my video on Chronic pain titled "Is Chronic Pain In Your Head? Psychosomatic Pain Explained (& My Story)"

Video Link: https://youtu.be/-oHaaY5IwFk

This video takes the viewer through a journey of awesome medical science filtered through my lived experiences to show you just how accurate it is to say that chronic pain is in your head, but how WRONG anyone would be to use that language to discredit you while also really getting into the nitty gritty of what the term psychosomatic pain means.I think all too often people hear what doctors have to say about psychosomatic pain and blow it off. It is my hope that by providing the science through the lens of the patient perspective that others might be able relate to the experience and gain some knowledge that allows them to have more agency over their chronic pain. Perhaps it's a bit idealistic, but I do feel like I haven't seen the patient perspective in this way online and I'm simply creating the content I wish existed for me back when I first started dealing with my chronic illness and pain.

Other Videos

My Therapist Saved My Life - Here's How
Video Link: https://youtu.be/5-h-vWJf5m0

In this video, I talk about the therapist that called me out on my bullshit, how I begrudgingly headed their warning and how that ultimately saved my life. Additionally, I share my personal journey through addiction, chronic pain, and PTSD, and how I've managed to overcome these challenges and find a path to recovery. Throughout my life, I've always been someone who takes risks and gambles in various areas. However, when it came to my own well-being, I came to the realization that I couldn't afford to take such chances. I also talk about how despite this understanding, I still found myself pushing my limits and testing the boundaries of my recovery and what that looked like.

The Day I Found out my Brother Died | Coping With Loss (The Effects of Grief Series Part I)
(Trigger Warning: Discussion of Overdose & Death)
Video Link: https://youtu.be/-9bmwGPRWyk

This video is on of my most personal ones. In this one I take you through the day I found out my brother died. It was easily the hardest day of my life. Sibling loss awareness is a topic that is close to my heart and if you are dealing with a similar loss, I hope you can find comfort in knowing you are not alone.

What Trees Taught Me About Death | Surviving Sibling Loss (The Effects of Grief Series Part II)
Video Link: https://youtu.be/DFfcPMFC5ZM

In this video I take the time to share how my brother's death changed me. Surviving sibling loss isn't easy and the effects of grief are endless. The loss of my brother led me down a path of self-destruction. Personally, I don't think sibling loss isn't talked about enough and being a survivor of it, I hope that my insights resonates with others who have lost a loved one.Additionally, I share a piece of my writing in this video titled, "The Moral Of My Story," where I express empathy for my past self and embrace the joy I have today. It is my hope that my story serves as a potent message of hope and healing for anyone navigating the turbulent waters of grief, addiction, or any other life challenges.

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With that said, my name is Danielle and I am not signing off just yet! I will be here answering questions throughout the day! So, ASK ME ANYTHING!

Comments: 36 • Responses: 11  • Date: 

asystole_____6 karma

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?

intentionallymyself10 karma

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.

One-Bumblebee-56034 karma

How did the cost of treatment not cause financial ruin?

intentionallymyself1 karma

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

RoboPeenie3 karma

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

intentionallymyself8 karma

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.

itsMineDK3 karma

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?

intentionallymyself5 karma

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.

DopyDope025 karma

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

intentionallymyself2 karma

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.

zasabi72 karma

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

intentionallymyself3 karma

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.

MagicPistol2 karma

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

It's wonderful, and sad.

intentionallymyself1 karma

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

JudgeHoltman1 karma

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.

intentionallymyself1 karma

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.

TylertheDouche1 karma

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?

intentionallymyself2 karma

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.

EarhornJones-4 karma

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?

intentionallymyself11 karma

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

Pineapple_YesOrNo-13 karma

[removed]

intentionallymyself2 karma

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