Proof Edit: I’m adding a screenshot of my diagnoses listed on my mychart from Cleveland Clinic. These are the only ones that fit in the screenshot. Apparently I have to prove it to some people by showing them my medical records.

Day of pills, next to pill bottle for size

Pill sorters

Some of my pill bottles. My boyfriend has the rest. He sorts my pills.

I used to be the epitome of health and was an athlete living my dreams, until my accident in 2014, at the age of 17.

After months of rehab, I recovered almost fully. But, I was left with progressing disabilities, which we were unaware of at the time. Over the years, I’ve gotten sicker and sicker. I’ve had many hospital stays. I became completely bedridden about 8 months ago. (another hospital picture)

My whole world consists of this room and doctor appointments. I spend most of the day alone, as my boyfriend works full-time. It’s incredibly boring and lonely. He is the only person I have interaction with. Some days, I just want to rip my hair out and scream. Thankfully, I spend most of the time asleep. My fatigue is so severe that I sleep ~16-20 hours a day. I’m going to be receiving a service dog to help me regain my life, which I’m beyond excited about, but it’ll probably be 2-3 years before I manage to raise all the funds. I’m looking forward to the day I can walk again with their aid (among the many other tasks the dog will do to help me).

I suffer from Myalgic Encephalomyelitis, POTS, Fibromyalgia, Gastroparesis, and cervical spondylosis. We are currently exploring the possibility of simple-partial seizures.

My occipital nerves are damaged, causing occipital neuralgia. It’s less common sister syndrome to trigeminal neuralgia. They are often considered the most painful condition known, and dubbed “suicide disease”, as 1/4 people with them commit suicide. I am being treated with gabapentin and baclofen, but my doctors will not allow me and further pain relief. I admit that I’d be one of the 1/4 if my family didn’t place me on “suicide watch” some days. If I could leave this bed and drive, I’d most likely self-medicate with heroin to make the pain stop on my pain flare days. I have no desire to become a drug addict, and I’m very glad I’ve never had the chance.

I also have PTSD from a severely abusive relationship. This included rape (in any way imaginable), torture, and other horrible things. I may answer questions about that as well, but most of it is blocked.

Ask me anything. Don’t hold back, I’m bored!!

Edit: My accident Many people want to know about my accident. I was kicked under the jaw by a horse, thrown back ten feet, and hit the back of my head on a split rail fence. I was seizing before I hit the ground. Paramedics spent half an hour trying to stabilize me (I kept seizing) before they could take me in. The fire chief left his car at the scene so he could come in the ambulance to help the paramedics. I was dying. They told everybody that, so that everyone were aware. They said that if I lived, I’d be comatose. There was a very slim chance of me waking up, but they said I’d be severely brain damaged. Yes, I had a helmet on. It saved my life.

I woke up later in the ICU. I didn’t have neurosurgery, like they expected. I had pretty good cognitive function. My only cognitive issues now are caused by brain fog from my other conditions.

Edit: Because people are asking, you can donate directly here by clicking on “help our next dog graduate” and using code AM-BE-AB in the additional information box. These donations are tax-deductible. I also have a gofundme, because for some reason, some people would prefer to donate there.

I want to make it very clear that I’m not asking for money. I don’t HAVE to raise a dime. They can do all the fundraising for me. It will just take much longer.

Edit: someone keeps posting “Bullsh*t” in the comments and linking an article written about me a year after the accident. I would just like to point out that it’s not BS, because... well, it’s me, lmao. Here is further proof. This is my facebook. Look at what I posted. Same name as the girl in the article, because that’s be me.

Edit: wow ok this blew up while I was asleep. I’m trying to answer as many questions and PMs as I can.

Thank you so much for your support, everyone.

Edit: no, I’m not paralyzed. I do have the ability to stand momentarily and some days can even walk up to ten feet before collapsing. I didn’t think this information magically made my illnesses fake, but I guess it does to the internet. The more you learn. I post my ups on social media, because people didn’t like when I posted my downs. I only linked my facebook to prove that my name is the same name from the article people were using to say I stole it from her (me). My reddit history should be more to your satisfaction if you want to see comments about being disabled.

Yes, I had a service dog. He was too small for mobility. He was for PTSD. He retired in 2016.

Edit: I’d like to clarify that the person naming all my drugs is wrong. I’m not sure why they tried to name them from a picture. I’m getting tired of trying to prove to people that I’m not spinning an elaborate lie spanning over four years, so I’m gonna stop answering questions. Thank you so much, everybody! Well, those of you who didn’t constantly try to “prove me wrong”.

Comments: 5598 • Responses: 78  • Date: 

Matteoke6118 karma

Have you thought about D&D or other online communities as a distraction?

chronoventer5178 karma

I’ve never played D&D. You can do that online?

Bassnectar_and_milk4346 karma

Wow, your story is unfortunately really similar to mine. I’m 21 and in April, my car was stopped and a semi hit us at about 70-75 mph from behind and the driver (my mom) was killed instantly. I was comatose for a month and given a 0% chance of even surviving. I And they said IF I woke up, I would surely be severely brain damaged and (for lack of a better term) a vegetable. I suffered a severe traumatic brain injury and a diffuse axonal injury to the left side of my brain. So my right arm and leg don’t work very well at all. This sounds really corny and forced, but I just hope you can stay strong like I’m trying to do. It’s really hard without my mom. My question is: how do you fill your time during the day? I’m stuck in bed, too, home alone, and I’m running out of ideas of what to do. Thank you and I’m amazed by your story!

Edit: sorry, I just realized I’m kinda stealing your thunder. I don’t mean for it to be that way, just letting you know that there’s someone else in this world that has a similar story. Although mine isn’t nearly as serious as yours.

Edit (part 2): thanks for the gold!

Edit (part 3): and the silver!

chronoventer1232 karma

Oh God no, don’t think you’re “stealing my thunder”!! This post wasn’t for attention. It was because I got bored, and wanted to give people some more insight on the lives of people like me.

You are valid. Please don’t feel bad about posting your story. I’m very glad you did. And I’m very sorry it happened to you.

MyPostsAreHalal4064 karma

How has your condition affected your relationships?

chronoventer5393 karma

I lost a lot of friends, because I can’t do much with them anymore.

violetbaudeliar2397 karma

Thats absolutely ridiculous. Id come and sit and play simple games and surf the internet with you. Isnt that what friends are for? What the fuck?? If you ever want to talk message me, please. 💙

chronoventer373 karma

Thank you!

VC_king662819 karma

My girlfriend has occipital neuralgia. Horrific headaches every day that were crippling. She was prescribed both drugs you mentioned and probably 100 others. A month ago, we went to a pain management specialist who actually diagnosed her correctly (every other doctor just figured it was a migraine/headache/muscle issue) and gave her 4 injections in the back of her skull - occipital nerve block. The headaches are gone and she has never felt better.

Have you tried an occipital nerve block? If not, get ahold of someone willing to give it to you. It’s incredibly cheap and almost painless.

chronoventer2505 karma

I have had nerve blocks. They were unsuccessful. I’m so glad they worked for her!!

youknowhattodo2381 karma

You mention you have a boyfriend. How did you meet? Before or after the accident? How do you maintain a relationship with your condition? He must be very patient. Good on him.

chronoventer4321 karma

I was in an abusive relationship before the accident. I left him because I realized my life was worth something. My current boyfriend has been with me since before I got this sick. He’s a saint.

Magus67961615 karma

He sounds like one. Bless him. I hope things get a little better for you. Try that roll20 site and give DnD a go maybe. Best of luck.

chronoventer979 karma

Thank you.

newlightpsych694 karma

Is intercourse still a thing for you two?

chronoventer1163 karma

No. It hurts too much.

bihesad1506 karma

Do you play any video games?

chronoventer2267 karma

I play League of Legends and Fortnite occasionally.

elle___1501 karma

Hi Abby,

I clicked your Facebook profile link after you posted it as proof. I noticed you've been getting comments from Redditors on your newest status update, and just wanted to alert you about one comment specifically:

"Came from Reddit too PLEASE please PLEASE look into Essential Oils from [particular brand]. I will PM you!"

I just wanted to give you a heads up (in case you didn't already know), this person is about to try to take advantage of you and get you to buy from him/the multi-level marketing company he works for. They target individuals who are sick and going through health issues (and well, pretty much anyone they can!) with claims these miracle oils can heal anything from cancer to colds. I was infuriated when I saw that a stranger from Reddit took the time to go on your Facebook and market to you. There's an entire sub devoted to how MLMs operate reddit.com/r/antimlm and it talks a lot about this essential oil company.

Best wishes on your recovery. I'm about to hop over and leave a little donation towards your service pup. I know how absolutely wonderful they can be!

chronoventer907 karma

Oh thank you but I’m aware. Essential oils are BS.

TJ_Fox1003 karma

Why will your doctors not allow you further pain relief?

chronoventer2406 karma

I live in Ohio; the state with the worst heroin epidemic. They tell me to just look outside and see what’s happening. I have explained to them that denying me medication will make me more likely to shoot up heroine. They don’t care. They also claim I’m too young. On Monday, I have another pain management appointment. I’m not going to be leaving until they help me. Not necessarily with opiates, just something different than my current plan.

HighOnGoofballs578 karma

Sneak some weed brownies in, at worst it makes the boring laying in bed slightly moreover tolerable for a bit

chronoventer1024 karma

I do smoke to help with pain :)

TJ_Fox85 karma

For what it's worth - and that ain't much, I can hardly imagine how it is to be you - I'd push for every "pain management" option on the table as a quality of life concern, and deal with addiction as and when.

chronoventer198 karma

I’m trying. Very hard. I’ve been trying for a long time. I’m hiring a medical malpractice lawyer if my pain management doc denies me proper treatment in my appointment on Monday. Not to sue, but to learn my rights.

TuckRaker855 karma

First off, I just want to say how sorry I am for your conditions. These sound horrible and I think any person, regardless of strength and courage, would struggle with these illnesses.

As for my question, if you could rid yourself of anyone of these conditions with the snap of a finger, which one would it be and why?

chronoventer1534 karma

Occipital Neuralgia. My world is dominated by pain. The back of my head and neck are constantly on fire. I once burned a hole in my leg (not proud of that moment, but pain makes you do dumb things) to see which hurt more. They were the same. It was a pretty deep hole.

TuckRaker466 karma

Thank you. I had to Google the condition. It certainly doesn't sound like much fun. Here's hoping you get some relief sooner rather than later.

chronoventer361 karma

Thank you.

junebugjen98718 karma

What do you think you would be doing had this not happened? Do you still think about your future once you are doing better?

chronoventer1143 karma

If this did not happen, I’d be on my way to be a professional eventer (equine sport).

Aryacait603 karma

As a nursing student it would interest me to know how you’ve been treated from the staff and what you would have preferred differently? Obviously a nurse can’t heal you, but they do have a huge impact on the healing process.

Have you built relationships with some nurses? Have there been issues? What are some of the things the nursing staff have done that you appreciate?

chronoventer668 karma

The nurse at my primary care physician doesn’t ask me to get out of my wheelchair to be weighed. I appreciate that. A shocking number of people ask it...

I don’t have much interaction with nurses, honestly.

ApXv597 karma

What prognosis have doctors given you?

chronoventer1377 karma

They keep telling me that I can get better. Which is true, I CAN get this under control with the proper care and rehab. But insurance denies a rehab facility or a skilled nursing home.

sympathyofalover1120 karma

Is anyone able to help you write appeal letters to your insurance company? I know it’s a stretch but people with less severe status get denied claims over turned all the time, I think it’s worth a shot if it hasn’t been done yet.

I would also try to have someone write on your behalf to the state healthcare administration. Presuming you’re on Medicaid/Medicare, you can make a complaint about the status of your denied claims and your overall feelings about your insurance coverage. I would also aim for a case manager of some sort from the community resources who can help you advocate. You can usually find places that provide this through your insurance or calling a 2-1-1 type of service (sometimes called a switchboard or resource hotline for your county)

Maybe a social worker from Ohio can chime in? I’m in FL, but here if you have a Mental health diagnosis, you can get a targeted case manager to assist you and advocate for you. I am positive you would have no trouble being diagnosed with a mental health diagnosis, even if it’s just to get your foot in the door for more providers. I also recommend therapy, and I think it could be helpful to have someone else there to talk to about your feelings and thoughts that isn’t a caregiver.

I really hope you’re able to get the care that you need. Some of the doctor’s rationales sounds bonkers to me, and I can’t imagine they are all going to be that way- keep pushing!! I really wish you the best of luck and I’m so sorry this happened to you. For what it’s worth, you seem very resilient to me, despite those times you say you’ve thought about suicide or using heroin. There’s hope in some of your statements, at least that’s the way I’m reading them, and I cannot imagine how difficult it would be to be hopeful enduring all of this suffering. If I’m wrong then I’m sorry, but I want to at least commend you on maintaining hope for your future.

Edit: Thank you so much for the Gold!!

I’d like to add that an attorney is a great idea as well as stated below by another user. Legal Aid or r/legaladvice might be two good places to start!

Edit x2: I am at a loss, thank you for platinum!!!

Edit x3: thank you for the silver!!

chronoventer690 karma

OH GOD I MESNT THANK YOU FOR YOUR KIND WORDS!!! Words, not Worse! I’m so sorry

chronoventer303 karma

I’ve tried everything with insurance. It just is what it is. I do need to get a social worker though, you’re right. I just haven’t gotten to it. It’s been pushed to the back burner.

Thank you for your kind words

TheHam06114 karma

Appeal! Appeal! Appeal! I wish I had more contact information to give you but don't just stop at the 1st person who answers the phone at your insurance company. Send emails/letters to the state insurance departments. Send emails/letters to the heads of the insurance company. When they realize you aren't going to go away they will approve you what you need.

chronoventer146 karma

I have appealed as many times as I can. I’ve tried it all.

ShortBrownAndUgly354 karma

Have you considered seeing a psychotherapist or a psychiatrist? I’m not implying you are making this up, but depression could be contributing to your presentation.

chronoventer203 karma

I have and do. I’ve been through lots of programs, as well :)

hugobwg_283 karma

How do the people close to you react to you and your mental state? Are they any help for you at all?

chronoventer648 karma

Many people are supportive, but many people think I’m just lazy and not trying hard enough. I’m not sure why anyone would think that. Who wants to lie in bed alone all day, every day, for MONTHS. with nothing to do?

Schlurps528 karma

It's because they cannot cope with the reality that even if you did everything right from the start, you can lose it all in an instant.

It's unfair and people don't want to deal with that. You being at fault somehow is much easier for them...

chronoventer301 karma

You’re right. That’s probably true, even if it’s their subconsciously.

hugobwg_18 karma

Yeah that sucks. Especially since you can’t do much aboit it. I’m so sorry for you and wishing you all the best!

chronoventer22 karma

Thank you <3

MowAlon252 karma

I want to know more about the accident... car accident? Physical abuse went further than normal? Fell down stairs? What happened, and would any of these horrible conditions have shown up without this traumatic incident?

chronoventer306 karma

Edited my post to include information about my accident!

They would not have shown up without it. The brain trauma triggered them.

MowAlon155 karma

Well, shit. Definitely wasn't expecting a horse. I have no idea what your chances of recovery really are, but I hope things get better for you. Good luck!

chronoventer112 karma

Thank you! <3

Midnight_Laundry150 karma

How much does a service dog cost?

chronoventer330 karma

A lot. Over 1,000 hours of training goes into each dog, over the course of two years. Between the cost of trainers, normal dog maintenance, etc etc, it’s around 20-30,000. Here is a chart explaining it a bit.

the_lovely_otter128 karma

How are your feelings about horses and riding after that type of accident? If you recovered enough to get back on or near a horse, would you?

chronoventer347 karma

I will be back on a horse the second I’m well enough. They are my life.

Oh_god_not_you120 karma

I developed diabetic gasteroparesis at the age of 46. I couldn’t eat, and the subsequent hypoglycemia left me unable to do anything on my own. I couldn’t walk out of my apartment, nausea, exhaustion, constant memory loss and insane anger issues. I could deal with everything ( the memory loss was very difficult to deal with) except the loneliness. On my own, all day long with no one to talk to. Everyone was busy getting on with their life and I was stuck in this limbo. I went insane from loneliness.

Even though my disease was classified as incurable I kept up the hope that I could somehow beat it. I cannot tell you what that hope meant to me, regardless of how utterly unfounded it may have been. You have got to have hope that things will get better. You must use that as your guiding force. Do you have two choices, get busy living or get busy dying. And you were too young, and way too beautiful to give up.

What if anything can I or anyone else here do for you ??

chronoventer88 karma

I haven’t given up. Someday, I’ll recover. I’m sorry you had to go through that :(

MSRP_45085 karma

Is there anymore proof you can provide to back up your story?

I hate to be skeptical but I'm skeptical. A couple of selfies with a band-aid and an IV are hardly proof of this terrible accident and extensive hospital stays. Don't you think there'd be a little more documentation in the form of medical records or bills*? (personal info censored of course.)

Not saying you're a liar but, it's hard to believe anything on Reddit.

chronoventer51 karma

You can look at the picture from my accident. I don’t really have any others. Nobody had their camera out while I was dying.

Here is a page that explains it a bit. It’s about my future service dog, but I talk about my accident there, as well.

I’m not showing you my medical records.

Edit: Here is my facebook page. I made a post about this AmA.

CL300driver3 karma

Sad that this is the truth these days. I see on her Facebook page she can walk, so that’s good! Way I read OPs bio, I thought she was paralyzed. Plus I just watched Taladaga nights the other day, so it reminded me of the scene where they confront him in the hospital room in his wheel chair. I’m terrible

chronoventer9 karma

I have the ability to walk. I’m not paralyzed. My body just can’t handle walking, and I collapse. I can walk about ten feet usually.

Creepyinceltroll2 karma

"Don't you think there'd be a little more documentation in the form of medical records?"

Perfectly reasonable question. Then you politely added: "(personal info censored of course.)"

Then she takes that back to:

"I'm not showing you my medical records"

But, there's would be no personal info on it if it's censored.

People may argue that it's her right to privacy (which is BS because once again no personal info), or some vague & meaningless "she has her reasons"... but to be honest, I'm not necessarily believing anything OP has said so far because of past faux reddit stories. Which is unfortunate because there is the slight chance she may possibly be telling the truth & if so, obviously in a lot of severe pain emotionally & physically. But maybe she's not as well.

chronoventer3 karma

My facebook. See? That’s me! Is that proof enough?

supercharged070864 karma

Where are your parents in your life?

chronoventer81 karma

They’re supportive.

Semi-Empathetic62 karma

[deleted]

chronoventer498 karma

Through the process of writing this post, I just felt hopeful that people would ask questions. It gives me something to do! It’s also relieving to talk about it.

I never really came to terms with any of it. Not to be melodramatic, but I hate my life every single day. Recovery is possible for me. I just keep hoping for that day. Sadly, insurance denied all forms of rehab for me. This makes me furious. So I’m probably going to be like this for a few more years, until I get my service dog. I know my life will change then.

Being in my shoes. Well, imagine lying on your back all day long in a dark room (because you can’t reach the light switch), with only the company of a dog. Everything hurts, and the back of your head is on fire. You hold your pee for a reeeeally long time, because getting to the toilet is so hard. Then you surf reddit, facebook, and play simple games all day. Your brain can’t comprehend more complex games. It’s too foggy.

I think about ending my life a lot. I’m not really living. I’m just sorta there, and I’m in constant pain. I wasn’t exaggerating about the fire part. I once burnt a hole in my leg (not proud of that moment...) with a lighter, to see which hurt more. They were the same.

My outlook on life used to be incredibly hopeful. I had big dreams, and was on my way to achieving them. Now, I just look forward to my boyfriend coming home every day, and my future service dog. I think about the dog all the time. He could turn the lights on, help me to the bathroom, and help me learn to walk again. Among lots of other things, of course.

chronoventer6 karma

That’s me. It’s not BS.

Atolla237 karma

This is a bit of a strange complement, but I love that you've posted this. On a daily basis, we face opportunities to do interesting things, or stick with our routines, and you've chosen to put yourself out there and try something new.

It's a really shitty thing that's happened to you. What are some of the worst condolences you've received? (Eg: this is all part of gods plan)

Would you consider trying psychedelics? Shrooms, LSD, etc. they can provide a new (albeit sometimes depressing) perspective on life.

chronoventer88 karma

“This is all part of God’s plan” is the worst one ever. I believe in God. I also believe He wants me to recover.

Luciditii31 karma

Hmm have you tried virtual chat software that lets you make an avatar? It can at least rid yourself of some of the loneliness. Also connect you to the outside world. I am sure you have I just felt the need to try and help.

My question I guess is. Are you ok <3?

chronoventer77 karma

I sometimes do voice chat on different games, but I’m not on my laptop much. The way I have to hold my head is too painful. It’s the nerves in the back of my head/neck that are damaged.

Honestly? I’m not ok. But someday I will be.

MickeyRen13 karma

You watch a lot of movies? Video Games? What's your favorite distraction?

chronoventer30 karma

I watch a lot of TV and movies with my boyfriend. That’s really all we do. Alone, I sometimes play games on my laptop, or do random stuff on my phone. I don’t really have a “favorite” distraction. I’m pretty sick of them all.

Flowersinhercurls13 karma

Did the complications from your TBI cause all your health issues or did the accident impact numerous parts of your body?

chronoventer21 karma

They’re caused by my TBI. The accident only affected my head, except for a split lip and some tooth cracking from the kick.

Edit: Read my update for this to make sense :P

EpicNinja218211 karma

Is there anything in particular that you need to eat or drink, or have specific dietary guidelines?

chronoventer21 karma

I have to heat a low sugar (including carbs) diet to keep my blood pooling to a minimum. Sugar draws more blood to your abdomen to digest it. I was hospitalized for about a week right before Christmas because I couldn’t keep any food down or in. I was diagnosed with gastroparesis. Since then, I live off pudding, jello, and ensure.

thegr8goldfish6 karma

Do people pity you? If so, do you find comfort in it or would you rather be treated as you were before your accident?

chronoventer31 karma

People pity me. I hate it. I want to be treated like a person, not like a sob story.

Gopanion5 karma

What are your hopes, dreams, and aspirations?

chronoventer31 karma

Right now, just to recover.

bnlv4 karma

A lot had happened to you and you’ve been through more than most people in life will ever have to. With all that leading to today. What is now your biggest fear? And what dreams do you have that you want to fulfill in your future?

chronoventer20 karma

My biggest fear is not getting better. My current biggest goal is to get on a horse again.

Drnew2 karma

If you could trade wellness now for 15 years shorter life, would you take it?

chronoventer6 karma

In a heartbeat.

ballseniormouth2 karma

What’d you do with the $1425 that your gofundme page raised two months ago? You haven’t updated the page since you got all that money.

chronoventer2 karma

I donated it to Little Angels to go towards my service dog. It’s $1425 less for them to raise for me! Which means it’ll be faster.

IAmAGarsoon2 karma

Serious question - what happened to the horse? And do horses piss you off now? From the sounds of it you either had or worked with a horse/horses, so one would think you liked them a fair amount to say the least right? :)

chronoventer3 karma

The horse was really freaked out and shaking, apparently. She’s fine now. I don’t hate her or blame her. I love horses. They are my soul.

mickeylouse2341 karma

ever heard of Morris E goodman?

chronoventer2 karma

Nope.

thelongestunderscore1 karma

do you get tried of people saying sorry, when i was hospitalized people saying sorry when they had nothing to do with it got old fast?

chronoventer2 karma

I don’t. I hate pity, but I don’t consider that pity. And I know people mean well when they say it.

phed11 karma

fuck off

https://www.dailymail.co.uk/news/article-3369210/Teenager-presumed-brain-dead-kicked-head-horse-learns-walk-saddle.html

so now your bed ridden but you managed to ride 1 year after the accident??

you dont even look like the same person in the pics ffs and the article remind you to wear a helmet not get kicked in the face!

chronoventer16 karma

I said I recovered almost fully, but my disabilities progressed. As I said in my post. I was able to ride after the accident. I only became completely bedridden 8 months ago. The only thing about me that looks different is that I aged, gained weight, and dyed my hair.

Here is my facebook page. Same name as the person in the article. Look at what I posted.

Watison1 karma

What was the ‘accident’ that started all this?

chronoventer1 karma

I edited my post to include it, at the bottom :)

Watison0 karma

Who was the abusive relationship with?

chronoventer1 karma

As in the name of the person?