Emily's Journey

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Emily's Journey this is my journey through chronic illness, im hoping to raise awareness and share humor.

19/07/2025

Part 2 of the inpatient amps program. This one is just covering the physical therapy. On the first day after your parents were gone they would have us tell them our pain/symptom triggers. Not all of us had other symptoms but I did. They would then make us do "physical exposure", this was just medical words for forcing you to do things that triggered your symptoms even if you cried or threw up from pain they wouldn't stop. For me any movement, textures, or cold temps. Part of my exposure was to put my arms or legs in a bin of ice cold water for a few min, never long enough to cause frostbite. All of the physical activities were high intensity, and we weren't allowed to work up to it just thrown in. Everyone hurt just from not being ready for the intensity and nobody was allowed hot or cold packs for the muscle soreness or be checked for actual injuries. Pretty sure I might have sprained a few joints but ill never know. Sometimes someone would sneak a sock full of ice as a cold pack but it was hard to hide the puddle of water and most of us were brainwashed enough a few days in to believe that we didn't deserve any of the pain relief things or mobility aids. Even though I had pain meds I didn't think I deserved the dose I had and dropped a dose and pushed back the others as far as I could, I really wish I hadn't done that bc pain is damaging to your brain. I still struggle with taking as much as I really need and not pushing doses away, and taking other meds in general. This is important to understand the rest, we had 'punishment' exercises. They never said the word punishment but everyone knew, usually they were wall sits (leaning against a wall with your knees bent at 90 degrees) or planks on your forearm (basically the form a of a push up but on your forearms). We had to hold these for generally 5 to 10 min depending how how 'bad' we did at something. I couldn't beat one of my times so I was forced to do wall sits for 15 min (idk why they seemed harder on me than the others), wall sits arnt supposed to be done for that long or without breaks. So I kept falling and bc I kept falling i 'wasnt trying hard enough' so id have to start over. I never held it for 15 min, I had to start over every time I fell and the only reason it stopped was bc therapy was over and they got to go home. I did that for an hour. Im pretty sure they actually enjoyed making us do punishments, and I don't understand why. Often times they would tell us that we weren't trying hard enough, or that we were faking, or didn't want to get better, or that it was our fault. The longer I was there the worse I did bc I didn't have amps and they were rapidly progressing the M.E. I asked them what would happen if the pain didn't go away, they said id it didn't that I wouldn't be able to get a job, a place to live, and id basically be living in a box on the sidewalk. Who threatens a child with homeless. I asked someone else and they said that if it didn't go away it was my fault bc I wasn't trying hard enough and that they didn't know what would happen but whatever it was would be my fault. Absolutely no mention of ssi or ssdi or any help like that, and since I was only 15 I didn't know about it. I couldn't talk to psych about it bc they would just reinforce that. They also taught us to shove everything done and only have positive feelings and say positive things. After the first 4 days it was shockingly obvious that it was safer to not show pain/symptoms and quietly put up with whatever they said to keep them happy and stay punishment free.a few of us came from outpatient amps programs so it wasn't completely new just a more intense/abusive situation. 10 years later and with a bit more than half of those spent in psych therapy to work on moving on and my brain is still stuck in the thoughts they taught us. The way the isolated us from parents/family/outside friends worked really well to keep us from reaching out for help.

13/07/2025

Hey dudes. I've been working through some stuff and have decided to expose some of the things that the "medical professionals " have done over the years as a way of working through my trauma. This will be a multi post thing. Starting with the pain program I went through. I won't be naming specific organizations and people bc i don't want to be sued however I would like to say I am in the Pittsburgh area, do whatever u want with that info. In early 2016 I went into the inpatient amps program. It stands for amplified musculoskeletal pain syndrome. Basically you get an injury and it heals but your brain doesn't recognize it so the area chronically hurts. They also funnel other pain patients into this even though they dont fit the criteria. Today's post is gonna be the 'rules' they had.
1. No parents were allowed to be there during any of the therapy. We had physical, occupational, and behavioral. So there were about 2 hours of visitation in the morning and 2 at night. Although some parents were allowed to sleep overnight but they had to either leave the building completely or sit quietly in the patient room. Nowhere else. We also had half a day of visitation on Saturday and full day on Sunday when we were allowed to leave and go wherever. Every other hour was filled with very intense therapy. This kind of isolation becomes common.
2. No visiting other patients rooms. This doesn't sound wierd at first but on the other side of the inpatient ward was just rehab nothing to do with the pain program and they were allowed to, and every other medical facility I've been in it was allowed. It was just the pain program.
3. No talking about your pain or other symptoms to anyone. The only time was when you were asked a question by a "professional", and even then it was the smallest amount that you had to give to answer the question. That includes new symptoms, worsening symptoms, thinking you might have gotten injured (it was intense enough alot of kids got hurt). Someone i was in with got a bad concussion and thankfully her mom found out and took her to a different medical facility bc the one we were at wouldn't check her out. She spent the whole night at the er and had to resume normal therapy in the morning. Nobody there cared about the concussion protocol she was supposed to follow. There were 4 of us 3 girls one boy, the boy wasn't in the program he was there for rehab bc of an accident but most kids hung out in the play room. They had a ball pit for little kids and we used to huddle in it to whisper about what we needed to talk about. Even in behavioral health it wasn't supposed to be talked about.
4. No pain meds, no mobility aids, and this one was an unspoken rule but no showing pain. It was always safer to not show pain or symptoms. If you had meds or mobility aids they were immediately taken away. Im not sure how I got around that rule, they were really mad about it and the nurses always had an attitude about giving me my meds.
5. No breaks. Keep in mind these were children and very intense therapy. We were pushed so hard kids would regularly vomit mid exercise from working to hard. If you threw up or stopped for ANY reason you had to start all over. No exceptions.
6. No exceptions to any of the exercises. I had my period for part of the 2 weeks I was there and 1 they wouldn't give me anything for cramps, no meds or even a hot pack. 2. I was almost forced to use a tampon for aqua therapy. I really had to fight them to give me land exercises instead. As an adult now I realize how messed up that is. I wish I had realized then and been able to tell someone.

The reason I didn't tell my parents was bc
1. I was a child and I knew things were very wrong but I was surrounded by people manipulating me. (And yes i am sure these are the correct terms, I have talked it over with my therapist).
2. They told my parents and I that they would give them info on how to deal with this from the parent side. They never did but I was honestly scared bc if that's how the "professionals" who had to follow rules and regulations treated me how would my parents treat me behind closed doors. My parents have always listened, believed, and loved me. I realized the only reason I was worried about it was bc I was being manipulated for 2 weeks and they really just didn't want me talking about what they did to us. My parent have continued to believe everything I have said about not being treated with compassion or empathy and I even have some really great friends who believe this to.đź’™ I don't know when ill post the next part. There is alot of stuff to go through and as I work my was through trauma I'm remembering more and more. If you read this whole thing thank you, it has been healing to write and let others know what these monsters have and continue to do.

Hey dudes. Last er visit a few weeks ago lead to a med being given that shouldn't have been. It cause what we are thinki...
09/04/2025

Hey dudes. Last er visit a few weeks ago lead to a med being given that shouldn't have been. It cause what we are thinking is akathisia. It's a movement disorder that causes extreme restlessness, intrusive thoughts that are often violent, uncontrollable movements, impending sense of doom, and panic and extreme anxiety. My movements are in my hands/arms and its an un natural twisting movement. I have aome swelling and pain from them. I don't have it all the time but the episodes are getting more frequent and the movements are getting more severe. So I had another appointment with the p*p and she called in something called benztropine. It's got some side effects I don't like but it's also got good reviews on helping this sort of thing. I'm really hoping it helps bc right now I'm taking ativan for it and I'd like to be able to stop. Pls send some good vibes that I don't get any horrible side effects. Love u dudes 🩵🩵 cheese Pic just cause he cute

06/03/2025

Hey dudes, just FYI. MY page here is scheduled to be removed by Facebook. They said I violated their trade mark rights and posted something inappropriate on march 6th . I didnt post anything on march 6. So I don't really understand what I did and they didn't give more info. I'll see if my mom can help me later. I'll see if I can create a second page and try to link it in the comments.

01/03/2025

Hey dudes an update on testing. Few weeks ago I re did the whole genome sequencing, it's been almost 10 years since the first round and research has found so much. It came back last night and I don't have anything, it did suggest that I look into an immune deficiency that has also been seen with M.E so I'll take it to my docs. I'm very happy that I don't have anything new and that the testing is over. This whole thing was alot for my ptsd. In general I've been very tired, and I've had a few seizures. Also got a few tests coming up( mri and some dental work under sedation).

25/09/2024

Hey dudes,💜💙💚💛🧡❤. Not to much has been happening. Very slowly working on therapy and ptsd. Im very slowly making small improvements but I'll take any improvement. Some of my other ptsd has gotten worse, I'll have to make a post explaining a bit about the kind I have. Been getting back to doing some of my hobbies and resting a lot. Not a ton has happened. I had one appointment that was just a checkup and for refills. I do have neurology in October. Oh and I'm supposed to get cavities filled under sedation at some point. Hasn't gone well the last few times we tried. Several of my diagnosis can cause cavities and now ive got a whole bunch starting so they want to get them taken care of before they can cause problems.

22/04/2024

Update. Every time things get worse for chronically ill people we have to figure out how to do things again with the new restrictions/symptoms/energy levels. So I've been working on that. I did have a few seizures over the weekend so I need to watch my new limits, and I need to watch this week in particular bc it takes about a week for recovery. Anxiety has been horribl, but I had a p*p appointment for it. We decided on lowest dose Ativan for doctors appointments and leaving the house while I work on exposure therapy. We are hoping it will help until I can get over the hump and get it to settle down a bit. I was doing well until the ME got worse. I still had Anxiety but I was able to leave the house and cope. Kinda upset i need this much help, ive worked really hard to avoid this and I made it 9 months. I'm hoping this will help.

Hey dudes. An update, haven't done one for a while. I'm pretty sure all the stress from last summer has caused some dis...
08/04/2024

Hey dudes. An update, haven't done one for a while. I'm pretty sure all the stress from last summer has caused some disease progression. I've been in a "flare" since last August and I dont think it's a flare anymore. My fatigue has been worse, it's been more of a struggle to do basic things. I did find these wipes to help with bathing, idk if anyone that follows could use them. They are called scrubzz, you get them wet and use them, you don't need to rinse them off and they have a little bit of a moisturizing effect but don't leave a sticky residue. They have been very helpful. I've been having a really hard time leaving the house due to both anxiety and fatigue, ive got some trauma from last summer and although I can physically go out in the sun my brain goes back to the I'm going to d*e panic. I did start some anxiety meds and they are starting to help but im not on a full dose yet. Just increasing very slow. I'm trying to do some exposure therapy but its really hard bc it uses so much energy that I get worse. Pic of my snuggle buddy, he makes being in bed alot easier 🧡🧡

02/02/2024

Hey dudes. An update, I had a p*p appointment this afternoon. I've been having alot of anxiety from over the summer when I was alergic to sunlight. So I've decided to start some anxiety meds, it should go ok bc its the one I was on years ago so we know I react ok. I've also been working with my therapist but that's not helping much. I've also been having problems with low blood sugar. There is research in M.E that shows that it can cause your body to start burning other things like glucose for energy instead of what it's supposed to. So when I do things that take alot of energy my sugar starts to drop and I have a hard time getting it up. It also drops sometimes after I eat wich just makes the whole thing harder. So I've got a referral to endocrinology and we are going to try to get a continuous glucose monitor. The needles from the finger pricks flare my nerve pain all the way up my arm, so hopefully it'll be less pain. Hope you guys are doing well 💜💙💚💛🧡❤

16/12/2023

Hey dudes. An update. About 2 ish weeks ago i started a new migraine med, it helped a bit but I ended up dropping it. Last Thursday I had a few seizures and then they got wierd, I felt like I had a lot of energy and wasn't tired, also felt like I was high but not on my usual meds. Everything was so intense and kind of shiny/sparkly, my mom and therapist both said that I was a bit off ( we figured out layer that was the euphoria). I'm glad it happened when I was with my therapist so we already know it wasn't mental health. We did call my neurologist but he's off so the doc who took over for him said to drop the qulipta bc its the newest thing. My regular doc is supposed to call us next week and I think we're gonna schedule an appointment. I did some reading and I think its a new kind of seizure, so I'm gonna ask him about it when we see him. Hope you guys are doing well. Happy holidays đź’™

30/11/2023

Hey dudes. I went to the allergist yesterday and it's been a while so I thought I'd update. The allergist went well, the water allergy is the best it's been probably my while life. We added one of the rescue meds they gave me over the summer to my daily meds and that has helped so much. I developed a new allergy to magnesium oxide, it was real close to anaphylaxis so I dont take that anymore. I'm pretty sure the sun problem made me more sensitive allergy wise. I've had reactions to more things and they have been worse. I've never had to worry that some random thing will send me into anaphylaxis. He refilled my epi pens to. My asthma has gotten worse with the cold but at least that's a normal problem.

30/08/2023

Hey dudes an er update. So my surgical site is not infected and they think it's just some wierd scar tissue. I follow up tomorrow/today with the surgeon just to make sure. This whole thing has been a mess. They are so busy, we got her at 2 ish in the afternoon and it's 12 30 now and they just said we could go. They did a CT scan and I was supposed to drink the contrast but i had a wierd reaction, felt like I was gonna have a seizure and impending sense of doom so we did the scan without it. They gave me zofran before it but I threw up anyway. We didn't get home until almost 2.

This morning I had an emergency appointment with the surgeon bc the er doc was worried about the lump of tissue under my incision, and it really is just scar tissue. I'm glad but omg so much energy for just scar tissue. The extra pain is just healing and I bruised way more than normal. The fever and chills was probably just my dysautonomia but we had to make sure it wasn't infected. Gonna go home and rest

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Welcome

Hi! Welcome to my page! My name is Emily, I am 17 years old and I have what I like to call an “uncommon strength.” In a short number of years, I’ve faced many medical trials – ones that I’ve learned to overcome and embrace. Follow along as I share parts of my journey and what I’ve learned along the way.