#anyway. posting this during one of my own chronic pain flares so i can live vicariously through daniel & his pain relief situationship

[mycenaae]

hold very still

rating: mature (mostly on a technicality) pairing: armand/daniel molloy series: the way people love evil (but can be read as a standalone!) summary: “What is this?” Daniel mumbles, eyes still closed, “puppetry as pain relief?” Silence above him for a moment, and then Armand, sounding a little defensive, “Dr. Bhansali suggested it might prove useful.” || a standalone interlude: still human, daniel does not pass a restful night, and armand decides to help out. anyone else watch 2x05 and go "wow armand could fix my chronic pain" or was that just me?

[thegoldenlily3]

Part 1of 2

Trigger warning! Graphic photos in this post.

4-6-17 In the very first photo, I have a horrible tooth ache and had no idea the pain and agony it was going to bring. It ultimately changed my life and for a very long time it was changed for the worse. In the photos following, you’ll see me change and look like death and then recover. You’ll see me living life to the fullest but behind closed doors or under my shirt rather, you’ll see how much I’ve had to overcome. This is my story.

On October 30th 2013, I had a colonoscopy and was diagnosed with Ulcerative Colitis(UC) which is a chronic inflammatory bowel disease(IBD) and an autoimmune disease. I was prescribed Canasa suppositories and my symptoms when away for about a year or so and then came back. I had to get a new Gastroenterologist doctor because my previous one had retired. He wasn’t much help anyway. My new GI doctor was amazing and caring and she saved my life. She prescribed me Lialda(NSAID) and Uceris(steroid).

At the end of March 2017, I had horrible tooth pain and called my dentist and they prescribed me Tramadol and Augmentin. The Tramadol made me sick so I called and had them switch the med and they gave me Clindamycin and that made me sick too. They gave me Hydrocodone and that also made me sick so they just had me taking Ibuprofen and Augmentin. I started to have a bad reaction to the Augmentin and got sores all in my throat and mouth and was throwing up and had severe diarrhea. I finished the antibiotic but went to the er because of the pain in my mouth and the vomiting. Mary’s magic mouthwash was prescribed to me to help with the sores and also nausea meds. The only time I was able to get any sleep was when this mouthwash numbed my mouth and throat. For weeks, I was unable to eat or drink anything nor was I able to take my UC meds and my heart rate was high. I went to the er multiple times during this whole ordeal because I couldn’t stop throwing up and all they would do is give me fluids and nausea meds then send me home. I went to an er and waited for 3 hours all the while throwing up with no end in sight and ended up leaving to go to a different hospital. On April 15th, I was pacing the house back and forth because I was miserable and didn’t know what to do. I didn’t want to go to the er yet again for them to just send me right back home. I remember I was pacing by the front door and my husband Issaac went to check the mail. I watched him and then started to say his name over and over because I felt like something was really wrong. Next thing I remember is Issaac kneeling over me and having shoes stabbing me in the back. I had passed out and my eyes were open the whole time but I was unresponsive. Issaac had ran in and thought I was dead. He called 911 and they wouldn’t answer. He used my finger to unlock my phone and dialed 911 and had both phones ringing and finally got an answer. (Fun fact for iPhones: if you press the big button on the side it will call 911 and they can track your location. Dialing 911 will not allow them to track your location.) The ambulance took me to the er and they did 2 EKG’s, CT scan(only after Issaac asked them to because I hit my head when I fell.), chest X-ray, and blood work. I was also tested for CDiff many times but it was always negative. Again, I was given fluids and sent home. They said it was normal for a lot of people to live with an elevated heart rate so they weren’t concerned. A couple days later I went to my primary care doctors office. My doctor was on maternity leave so I saw a different doctor. He did blood work and then wanted me to take depression meds. That was a hard NO! He said I wasn’t getting better because I was depressed about being sick. Yes, I was absolutely miserable and sad about it. BUT, there was something more going on. I wasn’t getting better and I knew it wasn’t my fault. I had to keep advocating for myself because I wasn’t getting help from any of these doctors I’ve seen. I think I went to the er again at some point and was sent home. Then they called me and said my potassium levels were too low and they didn’t think I’d be able to get down the prescribed potassium drink. So we went back to the er. Again. The er wouldn’t take the word of the doctor from another hospital so they did blood work again. We went to a different hospital because the wait at the previous one was way too long. So I received potassium through an iv and that is not comfortable. It burned as it went through my arm. I was also given Magnesium. I was sent home the next day.

Even though the sores were finally gone from my mouth, I was still struggling to swallow. I had my GI doctor schedule an upper Endoscopy which I had done on April 20th. My esophagus had no damage and there wasn’t anything stuck in there. While I was under anesthesia, my GI doctor did a Flexible Sigmoidoscopy. This a colonoscopy but only through a small portion of the colon. It was then that I finally, FINALLY after a month of being so sick that I was admitted to the hospital. My doctor said I looked like I was going to die. She said my colon was so severely inflamed that she couldn’t let me go home even though a patient being admitted after a procedure being done by her makes her look bad. She saved my life and I’m eternally grateful. I had 10 er visits and a scheduled dr visit and none of these doctors thought to have my colon checked knowing that I had UC and continued to show anemia in the blood tests they all ran. It all finally made sense. I wasn’t able to take my UC meds and I was taking 800mg of Ibuprofen for the tooth ache I had. This is what caused my UC to flare up. Why couldn’t 11 doctors put that together?

While I was in the hospital, I received 3 Iron infusions to raise my hemoglobin. I also had a speech therapist come in and she helped me with my throat issue. I was still struggling to swallow and she said that I was protecting my self subconsciously. She worked with me and I was finally able to swallow normally. I was so happy to finally eat a meal without a struggle. I was released 5 days later on April 25th even though I felt I should have stayed. The very next day I woke Issaac up because I was shivering and my teeth were rattling like crazy. My heart rate was 145. Issaac called 911 and we went to the er for the 11th time within a months time. I was put in the observation unit at Methodist which was in the basement because they didn’t have any rooms in the er available. I remember telling a nurse that I needed to go to the bathroom and I wasn’t allowed to get up on my own. She said ok and that she’d be back but when she got back, it was too late...She was gone for a long time. I at least was wearing a hospital gown. I was later put into constant care in the er. My heart rate had gone up to 180 and I was shivering and rattling teeth again. It was uncontrollable and the nurses looked at me like I was faking it. They hooked a heart monitor onto me and suddenly changed their tune because my heart rate was at 200. I believe they gave me aspirin and eventually I was transferred to another room where I waited for a permanent room because I was being admitted again. On April 28, I was admitted and I had another night of the shivering episode with my heart rate at 190. I’m trying to remember what this felt like but I can’t. I was so out of it and not even aware of my surroundings. It was on this day that our grass had been cut and it turned out to be our next door neighbor. We were very thankful for that.

A few days later, my heart rate was around 100 and my hemoglobin was much better. The diarrhea had slowed down so I wasn’t losing as much blood(because of UC) but I wasn’t eating either. I had iv fluids and they wanted me to drink Gatorade but my body was retaining fluids and I was swollen. That was a very weird experience. They did an Echo Cardiogram which turned out to be normal. My ejection fraction was 65% and 55% or above is considered normal. I know this is what they said but I don’t really know what that means. On April 30th, I received a blood transfusion because the retest of my hemoglobin showed 6.6 grams per deciliter and it should be for women between 12-15.5. A blood transfusion is scary. For the first 15 minutes, the nurse has to stay and watch me as I receive the blood to make sure I don’t have any adverse reactions and reject the blood. It turned out to be fine and I received at least a pint of blood. I feel I received another pint but I can’t remember. So I’ve been in the hospital for 10 days so far and I’ve been taking a steroid called Prednisone this whole time to treat my UC. I was also on morphine for the pain. I received physical therapy to help me walk but they were 3 days late. It turned out that there wasn’t an order for pt even though the doctors mentioned it every time they visited. On May 2nd, I was in severe pain and I went about 4 hours or longer without pain meds. The doctor was supposed to call them in and ended up leaving for the day without doing it. The next day, my bloodwork still showed inflammation so my colon wasn’t responding to the Prednisone. All the Prednisone did was make my head hurt sooo bad. I was taking Tylenol for it and it did nothing. My head hurt non stop for many days. I had warned them that Prednisone wouldn’t treat me right. I had taken it before and it made me so dizzy I had to have Issaac drive me home from work. This time it was just the severe head pain.

On May 5th 2017, I’m still in the hospital but I’m about to be released. For some reason my doctor was switched to a different doctor. This doctor decided to schedule for a colonoscopy. They gave me the bowel prep to drink with some clear Gatorade. This stuff was horrible. I’m supposed to drink it all within an hour and every minute of it sucked. I somehow managed to get it all down at the end of the hour. But then...I adjusted my body very slightly, and I threw it all up! I didn’t know it was coming and I had zero time to prepare for it. I just threw it all up all over my gown and in my gown and all over the blankets. I said to them, “I don’t understand why I have to do this. I have had severe diarrhea and I can’t even eat. There’s nothing in my stomach.” But they made me do the prep again... This time I drank it over the course of like 4 hours and managed to get it down without throwing up. I had the colonoscopy which they said went fine...I was still severely inflamed and they wanted to start me on a biological medicine called Humira and continue the steroids. During a colonoscopy, they insert a colonoscope into your bottom that transmits an image of the lining of the colon. The scope blows air to expand the colon so the doctor can see better. Well, after the procedure I was actually feeling alright but I had so much pressure in my belly and I felt like I needed to poop. I tried over and over to go on the toilet and it just wasn’t happening. But finally, it happened. And I was in bed...The nurses hadn’t been in for a long time and didn’t plan to be in for awhile. I was so embarrassed that I had Issaac clean me before they came in. Imagine a father changing a dirty diaper and gagging the whole time. This was Issaac and he kept running to the toilet afraid he was going to puke. To this day, we still laugh about it. It doesn’t matter how horrible the whole experience was, I can still laugh about it. Later that day, I was feeling a lot of pain and they had moved me to a different room with closer care. I remember this floor had some of the best nurses I’d ever had. Hospital policy was that a patient was to be bathed when changing floors. Issaac stood out in the hall as they transferred me from one bed to the other. This was an out of body experience and I can remember it so vividly. As they raised me off the bed, I started screaming in pain and continued to moan in pain after they transferred me to the new bed. I didn’t have any pain meds but I shouldn’t have been in pain. They were ordered not to give me pain meds because the doctor wanted me to be clear headed when they talked to me. I could tell the nurses felt so badly for me because of how much pain I was in. Issaac could hear me screaming down the hall. i was finally given multiple doses of morphine but it didn’t really touch the pain. I then had a CT scan done to see why I was in so much pain. The CT showed air outside of my colon which meant that the doctor had perforated my bowel during the colonoscopy. They started me on antibiotics and said a surgeon would be in to speak with me about possibly removing my entire colon. The surgeon came in and discussed my options. I either stuck with the antibiotics and steroids to see if I heal or I have the surgery. They said it was very unlikely that my colon would recover because there wasn’t any good colon left. I would have had to take a biological medicine for my UC which meant that my immune system would be even weaker and I wouldn’t be able to work in the Microbiology lab where I was currently employed. Even then, there was a slim chance of recovery. She said that even if I didn’t have a perforation, that this surgery was inevitable in my case. I cried and cried and cried. I asked her if I would still be able to have children and she said yes and that she would put extra tissue around my ovaries to protect them. A lot of people said I should get a second opinion but I wasn’t in that state of mind. All I could think about was being able to have children. I also did not want to be on medicine for the rest of my life.

On May 6th 2017, I decided to have the surgery. I had a total abdominal colectomy and an ileostomy surgery. My entire larger intestines was removed and they pulled my small intestines outside my stomach wall and created what’s called a stoma. The stoma is covered with a bag that has adhesive on it to stick to my skin. I essentially poop in a bag. I wish I remember more from this time. I can’t remember what it was like waking up to this. I do remember emptying my bag into the toilet though when I was finally able to walk. I couldn’t go alone though. I had to call the nurse every time I wanted to use the bathroom and there was an alarm on the bed if I tried to get up. One time I let it go off and went anyway because I had called them saying I need to go to the bathroom and they took too long. I don’t blame them. Each nurse had way too many patients to care for. At this point, my arms were completely black from all of the blood draws and IVs I received. Each nurse that came to draw my blood was so confident that they could get it even though I told them they wouldn’t be able to without the ultra sound machine. I had a nurse poke me 3 times and one of those times was in my thumb. Every time, they always had to call the team with the ultra sound to draw my blood. I had a Russian nurse for a few days and she was really hard to understand as her accent was strong. My issue with her was that she wouldn’t listen to me and would disagree with everything I said. I had been in the hospital for a few weeks so I knew what to do and I knew what my body could handle. I also had a male nurse who led me to ask my case manager if I could only have female nurses. I didn’t have a problem with the fact that he was a man. My problem was that he was too rough and he probably didn’t know it. I didn’t blame him for that but it was hurting me unnecessarily. He also forced me to walk to the bathroom on my own without help when I wasn’t supposed to be alone. I started taking walks with a walker through the halls after getting pt. Everyone who passed me cheered me on. It was extremely hard. They say every day you spend in bed is 3 days off of your life expectancy. I had been in bed for basically a month or so. After this surgery, I was on a morphine pump which I controlled and Oxycodone. The oxy kept me loopy. I was on 15 mg every dose. I hated taking it. I didn’t worry as much with the morphine as it didn’t really work for me. It helped give me relief for a few minutes but then faded. I pushed that pump button every time I was able to though. It was every 15 minutes. On May 12th, I finally went home.

Through the next couple of weeks, I had follow up appointments with my GI doctor and my surgeon. When I went to see my GI doctor, I told her about some pain I was having on my bottom. The pain from it made it very hard to walk or move or even sleep. She said it looked like an abscess but to confirm with my surgeon. So I went to see my surgeon and for some reason on that day I was pain free and happy so she didn’t think it was concerning. On May 26th I went to the er for the 12th time. I had a fever and was in so much pain. The er took me back immediately since I had just had surgery and they feared I was septic. It turned out to be an abscess and they took me into surgery to drain it. I was given anesthesia because of how much pain I was in. Thankfully I wasn’t septic and this turned out better than they originally thought. I guess since I was on steroids for so long, my body wasn’t able to fight off an infection so the abscess was very large and inflamed. I received another unit of blood and I still had a fever for a few days. The antibiotics were making me sick and I was really struggling to eat. Between the beginning of April and it now being the end of May, I had lost 30 pounds unintentionally. May 31 2017, I was released from the hospital for the third and final time.

Over the next few weeks, I was walking around the neighborhood and family and friends were coming to help care for me so Issaac could go back to work. I started to taper off the Oxy and that was not fun. I was taking such a high dose that I would nod off mid conversation. When I would wake, I would feel like I slept for hours when it was really only minutes and I would get upset because I was so tired and never really got rest. Even though I was high, I remember how I felt and the things I did. I remember trying to dance with Issaac in the kitchen when he was walking me through the house. I remember contacting people on fb that I hadn’t talked to in a long time. All I wanted to do was talk. I was oddly cheerful and accepted my situation. Anyone who really knows me knows that I am a half glass empty kind of person so this was unusual for me. I didn’t realize all of this until after I tapered off the oxy. My Dad was the only person who told me he was worried that when I came down, I would not feel the same. He knew that it wasn’t really me. I remember going to the ball park to watch a softball game with family and I ended up having to leave because I was in pain and I didn’t bring the Oxy with me. I started to cry because I was so embarrassed and sad that I wasn’t strong enough yet to be at one of my favorite places in the world. On June 18th, I was tapering and I had to have Issaac come home because I was feeling horrible and I couldn’t stop crying about it. I called him because I was home alone at this point because I could finally walk to the bathroom alone and make my own food. So I had to call in another order of Oxy to taper down slower because I was trying to go too fast and I was having withdrawal symptoms. I really don’t know why anyone would want to go through that. Eventually, I was completely off the Oxy and I was so happy to not have any withdrawal symptoms.

So Issaac went back to work after spending every single day with me in the hospital. I didn’t have short term disability because there was some confusion when we signed up for insurance together. I tried to appeal and it was denied Mid June, people from work hosted a bake sale at work to raise money for me. Just thinking about it brings tears to my eyes. I never felt that I had people in my life who cared enough to do something like this. Someone also created a go fund me page as well. I was overcome with shame, shock, and most importantly gratitude for such amazing acts of kindness. Issaac handed me the money that was raised and I just lost it. I was so emotional and just couldn’t believe that this was real life. I feel like this whole ordeal is something you hear about happening but never think that it’ll happen to you. Thank you thank you thank you to everyone who contributed to raising money and helping me get better and for all of the continuous prayers during this time.

July 4th 2017, I finally returned to work. You can see through all of the photos around this time and the rest of the year that I was enjoying life the best I could. In October 2017, I started to have issues with my skin under my bag. This became an issue off and on for over a year. I had been using the same brand of products since surgery for a year and then all of a sudden I couldn’t use it anymore without having an allergic reaction. My skin would start weeping and oozing and was extremely itchy. It also burned badly which over powered the itchiness. Throughout the year of 2018 I struggled with this a lot but I still went on living. The photos I provided are to show how one day I’m very low spirited and the next day I’m blissful. And I was. I was very blessed to enjoy time with family and to go on vacation with Issaac to the Niagara Falls and to go Gen Con. Gen Con was really hard. There was so much walking and I was so weak and still hadn’t built muscles back up. If I stood on my tippy toes, I would fall over from the pain in my calves. Standing outside in the food truck lines was the worst. The heat was making me sweat and interfering with the adhesive of my ostomy bag. Little did I know that this incident would make my skin worse than it ever was before. The photos are a reminder to me of what I’ve overcome. I wanted to create a timeline and show myself how strong our bodies really are. If you’ve read this far, thank you. Part 2 will be posted soon.

[mendes8123-blog]

As You Wish

Summary: the daily struggle of living with chronic pain

warnings: none 

word count: 3.2k

Authors note: This is my first real imagine that i’m posting and I really don’t plan to use Y/N other than for blurbs so oneshots and fics I’ll be giving a name to the “reader”. If you would like me to use your name in a fic just drop me a message and I’ll use it for a oneshot. Anyway this oneshot hits very close to home for me so I hope you guys like it. Thank you for reading if you do!

Persephone's eyes fell shut as she swallowed hard, curling up tighter into a ball as the stabbing pain in her back became sharper and the burning ache in her stomach became more intense. She felt like someone was stabbing her with a sharp rock from the back and a knife on fire from the front. It was excruciating and awful. It was the worst pain she'd ever come to know, and unfortunately was very familiar with it. She knew this pain all too well. This pain was her life. 

Persephone had been diagnosed with endometriosis at the early age of eighteen years old after five years of suffering through incredible pain that she thought to be normal. She thought that cramps so bad you vomited were normal. She thought that all the pain she was having even when she wasn't on her period was normal and just her body changing. She thought that it was normal to have pain during sex and after sex. She thought it was just part of being a woman. She was very wrong. She went five years thinking this was just how it was. She never said how bad it was because she assumed that all women dealt with this pain better than she did so she never said anything because she didn't want people to think she was weak or was being a baby and overreacting. 

It wasn't until she was eighteen and in her first year of college that she learned it wasn't. She had been trying to study for an upcoming exam in the library with her study group but she couldn't think past the pain radiating from her abdomen. She'd gotten up from the table to go and get some water when the pain became overwhelming and she passed out right there in the library. She was sure she was fine but the librarian had called 911 and the paramedics insisted that she go to the hospital. After explaining to the doctor that she was just having period cramps, the doctor knew something was wrong. Persephone would never forget the moment that she was told that this wasn't normal. Surprisingly enough, she wasn't scared or upset by this statement. She was relieved. She was so relieved because she always wondered in the back of her head how could this be normal and to know that it wasn't was so relieving. She had an answer to everything. 

The day Persephone was diagnosed was a shifting point. She no longer had to try to hide just how badly she was hurting. She didn't have to hide how exhausted she was sometimes when she was in flare up. She didn't have to downplay her pain anymore. She didn't have to feel like she was overreacting. Everything got better after her diagnosis. 

But with a diagnosis came so much more. Persephone had to find a regular gynecologist and go on birth control to try and control her hormones even just a little. There was no cure for the disease and no real treatment either. All there really was was birth control to make an attempt at putting a cap on the cramps and raging hormones and flare ups because this disease came with so much more than just extra bad cramps. It came with terrible headaches from the constant up and downs of hormones. It came with breasts so sensitive that a shirt brushing against them was like scratching an open wound, making a bra not even something that could be considered. There was bloating so bad you looked pregnant. And one of the hardest parts was that sometimes, despite wanting it, sex was unbearable. That was one of the most emotionally damaging parts of this disease for Persephone. She couldn't have a normal relationship because there were times that she couldn't do that. Not just because penetration was painful but also because orgasms were as well. The second the orgasmic pleasure was gone it was replaced with shooting pain in her midriff that was not worth the pleasure. She didn't know how she would ever explain that to her boyfriend so she decided that she never would and would wait until things were better before she got herself into a relationship. But life had other plans.

Perse met Shawn a year after her diagnosis, and just like her disease, falling in love with him was uncontrollable. And just like the disease, their love was intense and consuming. And she didn't fight it. She let it swallow her whole because she knew she couldn't let endometriosis be the one to swallow her whole. She couldn't let it take that from her too. And she needed someone. She couldn't do it on her own forever. 

Persephone had been so scared to tell Shawn about the endometriosis because she'd never really had to tell a significant other before. She didn't know how he was going to react or what he would think. They had had sex somewhat early on. It was only possible because she wasn't in a flare up and her disease wasn't driving the car that was her life and she had taken full advantage of that gift of time she had been given.

When she told him about her disease, he'd surprised her in the best way. He had asked with furrowed eyebrows and worried eyes if this was something that could take her life. When she'd told him that it wasn't he'd taken her hand between both of his and nodded and said, "That's all that scared me." Persephone knew then that she'd found her other half.

Her heart was racing from the pain and she tried to focus on my breathing, taking one deep breath in and one deep breath out, waiting for the painkillers to take some, any of her pain away. This was the worst it ever got.

She heard the closing of the front door and whimpered. She did not want Shawn here for this. He'd seen her through her worst days and had been there for all of it but she still didn't want him to see her this way. She just wanted to suffer in peace and go through the pain without worrying. Once she’d been studying with cramps while Shawn watched TV next to her and she’d snapped a pencil in half with her bare hand from the pain. Shawn had looked at me like she’d grown a second head. Granted, he didn't know she was having cramps but it still made me feel self conscious.

"Honey?" Shawn called.

Persephone remained silent and curled in a ball, knees against the bed and her head against the pillow, eyes squeezed shut and teeth clenched tight.

"Oh, honey." Shawn sighed upon being met with the all too familiar sight.

His heart ached for her. He knew that this had been coming with the way she been acting the last few days. Her mood had been down and she’d shied away from his intimate touch like his hands had blades on them. He knew this was coming he just didn’t know when.

It never really got easier to see her this way. The first time he’d seen her go through it when it was this bad he’d been on the brink of tears from the helpless he felt. There was no pain quite like watching the one you live for go through agony and not be able to do a damn thing for them. She had told him this wouldn't kill her but it felt like he was watching her die that first time. He didn’t understand how she could get through this let alone go through it time and time again. How did she go to work and school like this? How did she manage to sit through the pain in public like she sometimes did? 

He didn’t understand how she did it but he felt like she was Wonder Woman when she did.

Her chin trembled and she suddenly wanted Shawn closer than ever. Sometimes the emotional and mental stress of the pain was worse than the pain itself.

"What can I do?" Shawn fretted, his hand resting on her back, needing to do something for her. He could feel her body trembling as a result of the pain.

She shook her head, feelings tears slip from her eyes. "Nothing." She croaked.

"Do you want the heating pad? Will that help?"

"No." She whimpered, sitting up and coming face to face with her boyfriend, tears in her eyes, covering up just how broken they looked. But Shawn could see through it. He always could.

He cupped her face, thumb moving softly against her jaw, eyes full of concern and brows pulled together. "It kills me to see you like this."

"I think I'm gonna throw up." She gasped suddenly, jumping up and away from him and to the bathroom due to the nausea becoming too much.

Shawn had learned with experience and time that all he could really do was be there and go through it with her. Hold her hand and rub her stomach. Hold her hair back if she threw up when the pain became nauseating. Bring her a heating pad for when the cramps were starting to lessen. Try to make her laugh and not think about the pain. That was all he could ever do but He always still felt so useless at these times.

Shawn rubbed her back as she vomited and handed her some tissue when she was done. She rinsed my mouth and leaned on the counter, hands shaking as the pain ran its course. There was nothing she could do but to accept the pain and that was the hardest part. When you were in this much pain you felt like you needed to do something, anything to stop the pain or to make it hurt less but there was not a single thing that could be done. It really fucked with a person to go through that over and over again, sometimes days in a row.

Shawn got her back in bed and pulled her into his lap, legs criss-crossed. His large hand went to her stomach and pressed down gently. She let out a gasp and swallowed but didn’t stop him. The pressure helped in the long run.

"I'm gonna die." She huffed.

"I swear you won't." Shawn hummed, his hand massaging her midriff.

"But I am."

"I wouldn't let that happen."

A silence fell and her small hands went into fists and she turned her head into Shawn's shoulder.  A cry started to bubble within her chest, the pain too great to emotionally handle anymore. She was so tired. This was always so exhausting to go through. It took so much energy in every way to go through this kind of physical ordeal. It always left her drained and falling asleep wherever she was when the pain finally lessened enough that it was minuscule to her.

"I don't wanna do this anymore." She sobbed softly. 

Shawn held her tighter, heart clenching as he placed a kiss on her head. "I know, baby. I know. I wish I could take it away and give it to myself. I'd do it in a heartbeat if I could. You don't know how much it kills me to see you like this. But I always want to hold you during these days."

Shawn let her cry and never let her go, being there for her. That was all he could do and it was all she needed from him. 

With time, too much time, the pain faded away little by little until she was left with no pain. She had stopped crying by then and was just being held by Shawn. It must have been at least an hour that they sat there like that, without him letting go of her once or loosening his grip. Even when her body went lax in his arms, coming down from the tense and strained state she’d been in, he didn't let her go. She took so much comfort in him. The warm smell he carried from his soap, the gentle sound of his breathing, the feeling of his hands on her, tight and secure. It all helped her more than he would ever know. It was always harder to go through this alone when he was on tour or recording. He would never know just how hard those times were to push through this alone.

"Sometimes I don't know what to do because I want to protect you from this but I don't know how to protect you from your own body." He confessed.

"You can't." She breathed, making him swallow with the words he had no choice but to accept. He knew he couldn’t do anything but dammit if he didn’t want to try like hell. He donated way more money than she would ever know into research and foundations for endo. He had personally spoken with world renowned experts on this, hoping that they could give him anything that would help the love of his life’s pain lessen. But there had never been anything to give Shawn. He’d pulled strings to have her seen by those very doctors but it was always the same thing: birth control and maybe in a couple years, surgery that couple possibly help. A surgery that might even do more damage than good. Sometimes the doctor would offer a narcotic but she always denied them, never wanting to go down that hole. Endo already ran her life enough as it was she wasn’t about to let whatever control was still in her hands be taken away by painkillers. That wasn’t something she wanted to bring into her life or Shawn’s life.

Shawn kissed her forehead gently. "You okay?"

She nodded. "Yeah. I think I need some water. That was intense."

Persephone moved off him, sitting on the bed and Shawn went to go and get some water. She lay there, feeling the endorphins still running through her body from the come down of the pain. It was an indescribable feeling; to go from excruciating pain to pain free. It was almost the same feeling as the afterglow of a really strong orgasm. She was tired, muscles relaxed after so much straining. It was very unique.

Shawn came back with a glass of water and she took it gratefully. He also had what looked like  a DVD in his other hand. She couldn't think of a better way to spend the night than watching a movie with him, especially after that episode.

Shawn felt like he could breathe again now that Persephone wasn’t in excruciating pain anymore. Her breathing was no longer labored and she had stopped shaking. Her body was no longer crippled into a tight ball of agony. For the next couple of hours she would be all smiles, warm with the fresh feeling of being painless. What she went through would never be something Shawn could just accept. He didn’t know how and he didn’t know when but someday he was going to get a cure for her. He didn’t care how money it took, he was going to find a way to make it happen. If not in time for her then for all the other women out there that suffered through this day in and day out. For their daughter than Shawn wanted so badly one day that may end up with the same disease as her mother through DNA. 

“What movie is that?” She inquired, popping her head up to try and see what he had in his hand. 

“It’s a surprise.” Shawn snickered as he turned on the DVD player.

“Shaaaaawn.”

“Perseeeeee.” He mimicked, popping the disc in. “You’re gonna love it. That’s all you need to know.”

She pouted and pulled the blanket up to her chin, shimmying further down into their bed while Shawn pulled his black jeans off his legs to get into bed with her. 

“Wanna order food?”

She looked to him with a gasp, eyes wide for comical effect. “Harvey’s?”

“Whatever you want, babe.”

Shawn ordered their food through Postmates before snuggling into the bed with Persephone, tucking her under his arm, humming as she hooked her leg up onto him, her chest facing into his side. 

“Thought you were gonna pass out for a second there.” Shawn murmured as the advertisements for other films played. 

“I’m okay, though. It didn’t get to that point.” She looked up to him, the frown on his plush lips not something she ever wanted to see on such a pretty face. His eyes were on the screen ahead of him but she didn’t need them to be pointed at her for her to see what he was saying with them.

“Makes me worry about what happens when I’m not here and am half way across the world.”

“Baby…”

“I’m so afraid you’ll be by yourself and pass out and be alone. I don’t want you to go through this alone ever and I hate that you sometimes have to because I’m not here.”

Persephone wet her lips, heart falling in her chest. She knew he felt this way, had voiced it to her in the past just never as to the point as this. 

“That’s life though, babe. You can’t always be here to hold my hand through it. And that’s okay because I know that you would be if you could. I’ve never felt alone, Shawn. I know you’re always there if I need you. You’re just a text message or a phone call or a facetime or a flight away. Remember when you were in Leeds and I called you because I was hurting so badly and you stayed with me on the phone for an hour just talking to me and letting me hear you breathe?”

Shawn nodded, remembering how badly he wanted to jump on a plane and how willing he was to cancel the show that was in four hours if you’d just said the words. Hearing her cry over the phone had been heartbreaking to say the least. He didn’t really know what to do so he just talked and talked about anything and everything he could think of, hoping to distract her even just the littlest bit and pass the time. 

“Couldn’t forget.”

“You were there for me. I didn’t need you physically here to feel like you were here.”

Shawn exhaled, eyes flashing down to hers. “I just never want you to feel alone in the pain.”

“I don’t.”

Shawn accepted her answer, pulling her hand up to his lips and kissing her knuckles. 

Just then the menu screen of the movie came on and Persephone let out a squeal, nuzzling into his chest. “You really do love me!”

Shawn smiled wide, playing the movie, the intro to the The Princess Bride playing. He knew she was going to recite almost every single line of the movie but he preferred it that way. 

Every time Westley told Buttercup “as you wish” Shawn whispered it into Persephone’s ear at the same time. And when Westley and Buttercup kissed at the end of the movie, Shawn gave Persephone that same kiss, cupping her face gently.

“As you wish.” He whispered as their lips parted. “My love.”

[ghcstwalker]

⎣ hannah john-kamen, cisfemale, she/her ⎤I just saw [ AVA STARR ] walking around new york. they’re [ 37 ] years old and go by [ GHOST ]. they’re also [ A SUBATOMIC PHYSICIST & BIOCHEMIST ] when they can. at their best they’re [ COMPASSIONATE & RESOURCEFUL ] but at their worst they can be [ MERCILESS & UNFORGIVING ].

{ trigger warnings : mentions/implications of death, abuse, violence/murder, hospitals/chronic illness, & mental illness }

ty’s at it again... this time with one of my fave antagonists from the mceu: ava starr aka ghost. 

ABOUT AVA // 

my sweet baby who can do no wrong

theres not much about her aside from the movie antman and the wasp, so i fully fleshed her out based on personal headcanons, muse posts and headcanons on tumblr, and from the details included in AMATW.

 for anyone who hasnt seen AMATW or hasn’t seen it in a while, here’s a brief recap of ava’s backstory:

ava is the daughter of catherine & elihas ( otherwise known as the supervillain egghead in marvel comics ) 

elihas worked with dr pym but the two had a falling out. pym had him fired and also discredited 

but elihas continued his research anyways. he moved himself, his wife, his research team, and their daughter ava to an unidentified private research facility off the coast of argentina

when ava was a little girl, no more than 7-8, the quantum tunnel her father had been building exploded, killing everyone in the facility, including avas parents, except for ava. 

ava survived, was found by a crew of firefighters curled up beside her dead parents, but they couldnt touch her or. the quantum explosion gave her a condition: a quantum mutation called molecular disequilibrium. 

 her condition makes it so that every cell of her body is constantly being torn apart and stitched back together every day

it hurts her. a lot. it’s also what gave ava her powers of super strength, intangibility/phasing, and invisibility 

ava was sent to an orphanage and lived there for a little while until bill foster took her in

through bill, ava met shield. and shield weaponized her. they promised her a cure to her pain and condition but they lied. they robbed ava of her childhood and turned her into a master spy and assassin. conditioned her into becoming their killer.

they forced her to undergo a lot of experiments, honing and developing her condition so she’d become stronger. and used her as an asset to do their dirty work

during the hydra/shield uprising, when shield collapsed, ava managed to escape, and she ran off with bill who took her in and tried to help ava find a cure

without one, she will literally deteriorate into nothingness. all her cells will tear apart and she’ll fade into oblivion forever,,, yikes

ava spends the entirety of the movie trying to track down janet van dyne who’s time in the quantum realm let her harness enough particles to temporarily heal her. which janet does. but,,, it’s not enough. so they have to constantly go back to the quantum realm to get more particles for her so thats where we’re at now

soooooo here’s some random personal headcanons abt my baby & where shes at in life rn:

ava disappeared at the end of AMATW. i imagine she was on the run but eventually turned herself into the cops so that bill could escape and not get captured again. 

the cops transferred her to shield since shes technically their property. she was probably put into shield prison for being a defected agent. but maria found out about all the child abuse and flipped her shit, tbh. so she broke ava out and set her up with a safehouse 

ava took up scientific research to try and find a way to cure her condition because she doesnt want to be a burden on anyone. shes also very independent

shes,,, really shy. tbh she’s got near crippling social anxiety most days. she never had interactions growing up with people her own age. in the ghost suit shes a badass, hardened assassin with a very minimal moral compass but outside of it? when interacting to other people she doesnt consider her enemies? shes just a shy sweetheart

its been several years since her last dose of quantum particles so her chronic condition has been steadily flaring up

it hurts her a lot. it also makes it nearly impossible for her to hold things and do things. she accidentally falls through the floors or walks through walls uncontrollably. falls through her bed unless she sleeps in her special quantum room. she cant really hold things or eat things unless she focuses really hard and even then -- it’s not perfect 

she hATES shield (aside from maria and the few people maria brought  who ava learnt to trust) and HATES pym labs and dr pym and pyms kids. but. she loves janet,,, lmao

she loves conspiracy theories. cryptids. ghost stories. buzzfeed unsolved. horror movies. even shit like scoobydoo lmao. she likes mystery solving.  

i imagine she identifies as greysexual and demiromantic 

her casual daywear is mostly just grey. all grey everything. especially grey tracksuits.

she really is a sweetheart but shes so hurt. physically and emotionally. and so traumatized that it’s hard for her to open up to people and trust people. 

i think that’s about it for now ! i’ll probably update with more headcanons as time goes on but please hmu to plot i love my sweet baby more than life itself and she def needs all the love!! 

[marieclune]

November Health Update

Friends and Family,

I have been thinking about whether I would share a recent health update on Facebook/social media and I have decided I would because I feel it is so important to educate and spread awareness. I have always shared updates about my chronic illnesses here to keep my family posted, but also to educate as many people as possible since so many people don’t understand anything about chronic illness and how it impacts someone’s life. I’ve always known people may pass judgement as a result of these posts, but I feel a deep responsibility to speak out since I am one of the lucky ones.

There was a time, about five years ago or so, when the doctors were telling me I would never lead a normal life and I should apply for disability. They were prescribing invasive medication and recommending surgeries left and right, making it obvious they really had no idea what was going on or how to “fix” me. I was 19 years old. I had big goals for my life and I wasn’t willing to give up. Thankfully, I had great medical insurance and support from my family and I was able to look into alternate, more natural methods to cope with these illnesses. These natural methods are why I am able to function so well today and live life fully. Again, I am one of the lucky ones. Most people dealing with chronic illnesses don’t have access to the resources I did and I am grateful every day.

As most of you know, today I live in Jersey City and I work in Manhattan. I found a job with a company I really love this year and a role that makes me excited to go to work. I do life with the love of my life and the best person I know, Devin, and I have the cutest cat in the world. I have met amazing people since I moved to this area and I am sure many will be lifetime friends. I truly have a blessed life and I wouldn’t trade it for the world.

This year, however, I was also diagnosed with a new condition, Intracranial Hypertension. I had been having the symptoms for years and yet again, doctors could not figure it out and were throwing pills at me. My pain levels became excruciating daily at the end of 2017 and through most of 2018 and I became determined to get answers. All of this led to a weekend in the ICU with a fantastic neurologist who was also determined to find the answer, and he did.

I am getting to my point...

Following this diagnosis, I have had to make several adjustments. I have to take medicine every 12 hours, almost exactly, to manage the pressure and pain. This medicine is hard on my stomach, so I have had to go back to a more limited diet. The medicine also makes me even more tired than I was before, so I prioritize eight hours of sleep a night and rarely make exceptions. I have good days and bad days, but there are more good than bad days now. Finally, and most importantly to this post, I am unable to take birth control pills because they exacerbate my condition.

Most people who are close to me know that I was diagnosed with a genetic condition, Ehlers Danlos Syndrome, at 12 years old and very soon after that decided I would not be having biological kids. When I was this young, my thought process was simple. If the condition is genetic, I don’t want to pass it along. I hadn’t even gone through the worst of my health issues at this time, but I still didn’t think it would be fair to pass it down to a child.

Fast forward 5-10 years later, and I had never had the desire to have biological children, and my health was always a major concern. Looking back, I made the decision not to have children very early on and was at peace with it, but when I was 19, the decision was really cemented. I was a freshman in college and I had to drop out because I was so ill. I was in and out of the hospital for a year or so and had a few near-death experiences. I knew that I would never, in a million years, wish this on my worst enemy, let alone an innocent child. If there was any chance my child would be sick like I was, I wasn’t taking the risk. Not to mention, my life would be in danger during a pregnancy because of my health issues. Intracranial hypertension was just one more diagnosis, one more reason I knew I had made the right decision early on.

On November 29th, 2018, I will be having my Fallopian tubes removed (permanent sterilization) in Richmond, VA. It has been a challenging journey over the years to explain my reasoning for this surgery to doctors and friends and family and receive reactions like, “You are too young to make that decision”. I kept asking every year at the gynecologist, but I knew this surgery likely wouldn’t happen until I was closer to 30 and I was okay with that because I could take birth control. In light of my new diagnosis and the fact I could no longer use birth control, I knew I had to find a doctor who would listen to me, listen to my story, and trust that I knew what was best for myself and my body, even if I am young. I am so grateful to have found this doctor at Virginia Women’s Center.

There are a few people who have been instrumental in this process and I could not have done it without their support. Fighting health battles is exhausting and these people kept me going. My mother has been my biggest advocate since Day 1, and she fought to find answers when I was young which led to my Ehlers Danlos diagnosis. My mom has been by my side through every sick day, new diagnosis, everything, whether she is right next to me or we are hours away from each other. My mom came to the doctor’s appointment in Richmond this fall to support me and provide background information that supported the fact I was 100% sure I wanted this surgery. I will also be staying with her after the surgery and through December as I have follow ups. My Papa, mom’s dad, has also been extremely supportive over the years and with this situation.

Devin is the most amazing man and has loved me so well and unconditionally over the past few years that we have known each other and dated. This situation has been no different. I told him about this when we first started dating and he has always been on board and in agreement. He has taken care of me almost as much as my mother at this point during flare ups at home or when I need to go to the hospital. Devin’s mom has also been one of my biggest supporters with this situation and in general as she understands chronic illness on a personal level.

I am posting this knowing that this is a controversial topic and there will be varying reactions. These reactions will range from full support to thinking that this is absolutely wrong and I shouldn’t be doing it. You probably have questions, like:

What does Devin really think?

What if you change your mind?

Why are you having your Fallopian tubes removed and not “tied”?

What are the side effects of the surgery?

I invite you to ask me these questions in a private message if you have them as I truly aim to educate. For the past few years, I have felt I am not in control of my body, future, or health because I am young and female. Doctors and people I don’t know very well have told me countless times that I will change my mind. It has been frustrating and depressing, but I continued to advocate for myself and my health and happiness anyway.

I want anyone who reads this far to come away with a few thoughts:

- Chronic illness is a daily fight and you do not understand unless you go through it or are around it constantly.

- Women have the right to decide what to do with our bodies and reproductive systems. Period.

- Don’t write someone off because they are young. Listen to them and their story, listen to their view of the world, and gain a new perspective.

- Be your own advocate with EVERYTHING- health, career, happiness. You know yourself better than any other human in the world. Trust yourself and find your happiness. It can be exhausting, and it usually seems so much easier to just give up and take no for an answer. Don’t give up. Keep fighting another day, then another, then another. Stand up for yourself even if others won’t. You will be amazed what can happen.

I hope this helps open minds and educate. I am always happy to chat about any questions you have regarding chronic illness or this specific surgery/decision. Thank you for reading.

Xoxo,

Marie

[newhologram]

New’s Atlas Subluxation and chronic illness timeline

It’s in my nature at this point to document things and it’s smart to keep track of my healing post-procedure anyway, so I might as well make a timeline here and share the experience as usual :p 

Feel free to ask any questions, it doesn’t bother me at all. We need to let patients be teachers too, I think. 

So here is my atlas subluxation and chronic illness timeline with backstory leading up to the procedure before it gets super specific with dates. I will try to update this during my healing as much as I can to document changes. I’m putting lots of links to posts where I talk about things as well, but you can also go into these tags on my blog to find more information: #personal #atlas subluxation #fibromyalgia #chronic pain #chronic illness #invisible illness #narcolepsy #ulcerative colitis  1.16.17 Posted with info up until this day. 4.12.17 3 month update!

1989: Born December 29th at a 3 1/2 lbs. Taken out prematurely because there was a complication with the umbilical cord and I was no longer growing. I had to stay in an incubator for 11 days until I weighed enough to go home, which was 5 1/2 lbs. It’s unclear whether or not the subluxation was present after birth; it’s possibly that I could’ve been pulled out in a way that caused it, but we have the next event as a definite marker for when things started getting worse. 

Summer of 1996, age 6: While playing with sister I accidentally fractured my collar bone. I went up into the air, I remember seeing the ceiling coming closer, and then I fell straight down onto my back pretty hard. I cried and cried and said over and over again, “I broke something, I broke something” until they took me to the hospital. I vividly remember how I shook when they put me on the table to x-ray me. The doctor cheered me up by pointing out the gas in my chest. But basically they were like yep, there’s a fracture right there. And they sent me home with a sling. I remember that it had dinosaurs on it and it made me happy.

1996~2000, age 6 to 10: Always sick. Daily stomach aches, digestive issues leading to restrictive diet, nausea, back pain, bad posture, fatigue, insomnia, nightmares, sleepwalking, always cold, chronic bronchitis, hypersensitivity to stimulus like sound, light, color, taste, smell, temperature, and even experiences whether positive or negative, auditory processing disorder making it hard to understand what people said, problems with being “too excitable” and having intense reactions to rejection which was hard because I was constantly bullied and controlled by peers for being “weird” and “different”. I struggled in most subjects, but especially math, and I could never really handwrite properly, even to this day. School in general was just very hard because I never felt well and couldn’t keep up with others. Crying on the floor meltdowns whenever there are loud sports games or if a friend goes home early from a sleepover or if a parent gets mad at me (or I think they are). These meltdowns persisted into adulthood. I was always just called dramatic for them.

2001~2009, age 11 to 19: Middleschool and highschool were even harder. I struggled in most classes except for creative ones. Health problems persisted: first sleep paralysis with hallucations episode at age 12 or 13 and often had episodes after school that would eat up my early evening and wear me out mentally, still had problems with bronchitis, ovarian cyst caused me a lot of pain and missed classes, then I started having even worse digestive problems. By age 15 I had my first upper endoscopy and colonoscopy where they discovered ulcers in my esophagus, stomach, and intestines. Feelings of isolation, unable to feel like I could connect with people, noticeable depression, loneliness. First vomiting panic attack at age 17. At 19 did a homestay in Japan; an amazing experience but made difficult by vomiting, fatigue, insomnia, anxiety leaving the house and exploring by myself and freaking out when I got lost.

2010~2016, age 20-26: Health problems begin to worsen in early adulthood. Age 21: I’m vomiting a few times a week and having a ton of other problems, diagnosed with ulcerative colitis. Sleep and fatigue problems making it hard to work at my retail job especially while I’m in college. Age 23: suddenly the sleep paralysis and insomnia are impossible to manage and I go several months with very little sleep, getting worse and worse, every day having looong hard sleep paralysis episodes that leave me with horrible headaches and slurring like I’m drunk. I still go to auditions and work jobs I book as best as I can but get a narcolepsy diagnosis after a long process of sleep study and being yanked around by insurance not letting me actually see the neurologist for my diagnosis. Depression is getting to the point where it almost paralyzes me but I do my best. Health problems cause fights with family. Age 24: not long after the narcolepsy diagnosis: the pain and fatigue become excessive and debilitating and I get the fibromyalgia diagnosis. Condition worsens and worsens, a bump forms on my upper spine that causes horrific pain and distress. 2014 I’m in the ER/urgent care 4 times because the pain makes it unable to rest or stop vomiting for days on end (the most being 6 days where I lost 12lbs). I go to an Ayurvedic healing center because the doctors were useless. There is some improvement but I still struggle, at least I had a lot of good coping tools to keep myself a live, if only barely at times. In bed most days in horrible pain and exhausted by simple things such as getting up to use the restroom. Depression is horrible and a cloud of suicidal urges hang over me for almost 2 years because I feel like a failure who is ruining my family’s happiness by being sick and I feel an intense hatred for myself. I try to work a very mellow part time job at a perfumery but the pain makes it too hard and I’m eventually let go.   Age 25: Depression persists but I force myself to start doing background TV/film work on a weekly basis. Making money helps calm me but it’s incredibly difficult with my health problems and I often vomit on set from fatigue and pain. I start seeing a chiropractor to help alleviate the pain and depression. It helps but I have to see him twice a week at first, then once, then every other week, but during a flare up it’s back to once a week. I also start seeing an acupuncturist which helps with organ function and eases some symptoms but I still have to see her regularly and the expenses add up and cause more problems with my family since I’m barely able to afford them on my own.  Age 26: I get a part time job in retail to help supplement me while I do background work. With the skills I learned I’m able to manage things but I still suffer a lot every day and don’t sleep well because of the pain. Later in the year I stop doing bg work and get an additional part time job. I had accepted long ago that I would be in pain for the rest of my life and that all these tiny minimum wage paychecks I worked so hard through agony for would just go straight into managing my symptoms. I accepted that by age 45 I might be bedridden but at least I was doing my best now in my 20′s and I needed to accept whatever time my body had on this planet and do my best to be a source of light for others going through the same thing.

Starting the week of the December 18th, 2016, I have a lot of work days in a row and I’m slammed with auditions. It’s getting colder and colder, my pain is higher, I don’t have much time to rest. By Christmas Eve I’m in bed all the day with only short sporadic moments up to pee or try to soothe the depression with an activity. It’s so bad I can barely last 20 minutes at times before I have to stumble back to bed green in the face and weak.

This flare up continued until Wednesday, January 11th, 2017. 25 days of high pain and fatigue levels and going a few weeks only able to eat yogurt and a few crackers with one or two proper meals a week if I can. Lots of throwing up, usually two nights in a row, maybe a little break, and then back to it, just horrible persistent deep nausea. This is why I got down to 103lbs. Oops.

So, here’s where the timeline of atlas subluxation discovery and treatment starts:

12.18.16 ~ 1.11.17: Flare up from hell that wouldn’t end. It was suddenly back to the intense high levels I had back in 2014 when I didn’t know all these pain management techniques. Naturally, I was terrified and used every possible coping technique possible to get through it. Since it was so high I was just. Hoo. Each day was a rollercoaster. The pain gives me hella moodswings. Zip, zip, had to just keep it zipped as much as I could so I didn’t look like an asshole. If I had to work one shift I basically had to make sure I didn’t do ANYTHING beforehand to save those spoons and keep the pain from spiking, but I didn’t want to pass up auditions so I forced myself to a few. The pain got so bad I couldn’t even sit up in bed most nights. Missed a lot of work. Had to meditate like crazy to keep positive thoughts in the front of my brain but it was very difficult.

1.5.17: Barely clinging to positivity but trying my best, since I’m always in bed I work up the strength with a LOT of rest and pain management to play a little Pokemon. Meanwhile I’m trying to work on gross crunchy calcium in the back of my neck (yeah, it’s nasty) and this huge chunk comes off inside my neck, like just... a crunchy chip floating in there that I could move and scrape against my neck

UM. I YELLED and immediately posted about it and freaked out because by googling “hard crunchy back of neck floating” I discovered atlas subluxation. http://newvagabond.tumblr.com/post/155495266822/atlas-orthogonal-changed-my-life-migraines

1.6.17: Appointment with primary care physician to update her on my rapidly worsening condition and talk to her about atlas subluxation. She got flustered and was saying, “this isn’t something the healthcare system considers as treatment” and I was like WHY and at this point I was done being pushed around and I said many times, “Sorry, I just need you to hear everything that I’m saying” as I went over this whole page of notes I made for her about how this procedure could give me my life back. I lamb’d her into submission in order to get her to write several referrals to try to find someone. All she could do was refer me to the bone doctor and the neurologist.

GUYS IT’S LITERALLY LIKE, oh, your brain and body are breaking down because this one bone might be out of place? It’s that simple and obvious and we can find it in x-rays easily if we know what we’re looking for and there are already specialists who do this specific adjustment around the world?

Hmm... nahhh... nah... don’t even check there. Just treat this girl’s depression and pain with drugs FIRST, before we determine that it’s the organs themselves with the deficiency. We’ll just try that and see what happens, $50 please. I have been on 3 different depression/anxiety meds, zofran, xanax, ativan, tramadol, various colon steroids?? Just a ton of crap.

Even knowing I will need to pay an atlas doc out of pocket, I get so depressed that I can’t even bring myself to make a phone call for an appointment. 

1.11.17: Crying and screaming level of pain, very weak, depression so intense all I could think while obviously very, very ill was “I’m the worst/I should die/I’m just a problem/I’m ruining my dad’s life/I’m an unreliable loser and all my coworkers and employers think I’m lazy and dumb/no one likes me because I’m too weird and always sick” etc etc. My dad almost took me to the hospital because the pain was just way too intense and making me lose my shit. 

1.12.17, day of procedure: In the morning my dad called me and suggested we just do it, just call one of those specialists. I was in no state to make phone calls so he did it for me. He picked the closest one and called her. He said, “my daughter has fibromyalgia and she’s in bad shape” and the doctor said we could come in that day.

My post after the adjustment describing the experience with photos Even walking is different Other details about the visit Brain activity is high at bedtime but I can feel my body 1.13.17, day after procedure: Wake up sharp at 8am, do yoga. Got some pretty intense back and neck pains and fatigue but it’s different. I feel sore and aching like my body is letting go after holding onto something for a long time. I have an appetite.  Talking about how this is the first doctor I’ve ever met who was just so confident in her ability to help me instead of shrugging and giving me drugs Reeling because everything is making so much sense and how our medical system is awful Prophetic dream? 1.14.17, day 2: Went to school, had fun because I could think properly. My dad took me to do errands after. I got really tired and had pain but it was still very different. We picked up some suggestions the doc gave me to help my body during the healing process. Thinking about how crazy it is that my body is going to be slowly adjusting and healing over the next year or so More thoughts as I feel my body change and think about what lead up to all this Hope and healing Already seeing a drastic change in sleep

1.15.17, day 3: Back to work at my retail job. Kind of difficult because I’m under strict orders from the doctor not to lift more than 5lbs as not to make my atlas go back out of whack. Lots of pain and fatigue by noon from having to use my body so much. But brain is still sharp, having fun with customers.  On my break I start looking up atlas subluxation and how it affects a child’s brain development since I realize that this means that I grew up with a compressed brain stem. Unfamiliar feeling of peace and calm Sad thoughts remembering my childhood Suspicious of the medical system not recognizing this A thank you to friends and followers during this hugely important time

1.16.17, day 4: Day off. Pain levels got pretty high so I did my best to rest a lot. I was too tired to play more than a little video games.  Noticing I look different in pictures Anon asks if the bump on my spine is gone More research, ebook with alarming symptoms that match mine Exposing a secret Text post talking about the pain and family members looking into this now/ Meant to be Stepping stones Having another look at my MRI More info 1.17.17, day 5: Very tired. Slept in until 9am, managed to do 5 pushups, yoga, and some light hula hooping. Had a good breakfast and got about an hour of editing done by 11:30 before I was just way too tired, so I napped until a little after 1 and had a small lunch. The pain wasn’t so bad, it was mostly fatigue. I ended up needing another 30 minute nap before I went to work. I felt kind of depressed but I’m not sure if it’s because of my worry about work. I worked today and I have to work tomorrow, I’m just worried 2 days in a row will be rough like it usually is. I still really wish I could just take time off completely and not force myself through these shifts. But I don’t want to lose my jobs. :( We’ll see. Epic upper body spasm while trying to make a snack 1.18.17, day 6: I slept really well despite waking up randomly at 3. I felt calm and warm without my heated blanket on for awhile, and fell back asleep easily. I ate a really good breakfast and lunch and work wasn’t too bad. I’m still very sore and aching, and having to move around so much definitely doesn’t help that. My mood was back up again, but I do feel a bit emotionally overwhelmed by all this information. I’m feeling anger and the urge to call my primary care doctor and ask her how she can even call herself a doctor.  Wondering what differences my acupuncturist will notice Crooked glasses no crooked atlas yes Sharper brain at work Frustration and wondering how much worse I would’ve gotten Positivity is important but it doesn’t fix a spine by itself Happy to have answers but feeling a lot of sadness 1.19.17, day 7 and my follow up with the atlas orthogonal doctor: Follow up post here with “after” x-ray pics Thoughts on Snapchat Ashwagandha Lots of fatigue and also depressive mood swings keeping me in bed.  1.20.17, day 8: Fun day out with a friend, very much needed. She got me a gemstone for spinal alignment! Pain wasn’t too bad all day and by 5pm I was getting tired. VERY squirmy feelings. 

Atlas noise is grossing me out Dear my body Reflection on my experience in the crystal store and how life has been the past 4 years being so sick Thinking about a classmate saying something kind of inappropriate 1.21.17, day 9: Bad depression and fatigue. Missed school and had a really rough time at work. 1.22.17, day 10: Mood improved a lot, felt okay at work and had a good massage. Super hungry.  Sat at my desk for so long! But also so much wiggliness that I hate 

1.23.17, day 11: I felt good so I vlogged a lot! I pushed it a little and had to rest a lot after though, oops. 

Pain is high at bedtime, I need some kind of memory foam pillow 1.24.17, day 12: Acupuncture appointment went well, she was pretty amazed. Worked, pain came and went. Felt energetic. Even played OW when I got home. Depression is coming in smaller waves now but they’re still strong and can knock me over. Answering an ask about x-rays Another ask about fixing the atlas yourself Depression coping tips

1.25.17, day 13: A lot of depression first half of the day. It got better once I got to work. Pain got up there at night but I managed to get some OW in. Forgot to buy spicy patches but I have a new magnesium oil spray.

Brain reprogramming

1.26.17, day 14: Went to the market by myself and regretted it because I ended up in bad pain by 11am. Didn’t get much done the whole day, slept on and off like a toddler. 

Thoughts on growing up Spoonie snaps: food and owies Night sweats pretty much gone 1.27.17, day 15: Another day of lots of pain and fatigue, but I managed to do a little bit and play some games. The impact of choosing not to suffer in silence Fatigue depression

2.6.17, day... omg idfk! I’ve been so wiped out I haven’t had the energy to sit at my desk and keep this updated. 

Basically, things have still been a wild ride. I had a little over a week of high pain levels and fatigue but thankfully no vomiting, but looots of depression and badbrain. I’ve been doing my best to manage everything and stay on top of my self-care routine as usual. Each day is different and things are changing little by little. 

Since so many of my updates/thoughts are in text posts I’ll just link them like I was already doing. 

1.28.17 Chronic pain problem of trying to time medicating

1.29.17 I feel like I’m not allowed to rest One day I’ll be big and strong Recent snaps of pain management and finding comfort in cats and facemasks

1.30.17 PMS messing me up and such

1.31.17 Before and after x-rays and thoughts about my MRIs Got an adjustment at my regular chiro and it went great

2.1.17 Recent snaps of special spine pillow and such Missing gaming because too much pain ;(

2.2.17 Vlog teaser: working on medical marijuana vlogs! Advice for an anon Relating to a follower about overstimulation caused by a new pain

2.3.17 Spoonie actor visibility Snapchat story Heard back from the MyStrength people Intense flare with bad spine and rib pain and fever

2.4.17 Vlog about getting my handicap parking placard

2.5.17 Tonsil stones ; ; Morning depression Spoonies, Stay (about spoonie suicide) Intrusive thoughts, healing is painful, and on being a late bloomer

3.14.17

Time has gotten away from me. It’s hard to keep track of things. I’m having good days but more bad days. Lots of swelling in my upper neck now. Video here to show how big it gets http://newvagabond.tumblr.com/post/158336271242/this-is-what-i-mean-when-i-say-ow-my-upper-spine possibly because I didn’t rest and stuff, chiro had to do a lot

Depression was pretty bad too. And there’s been a huge weather change. It’s possibly that’s related to my flare up. Feeling hopeless.

Frustration at being told I’m lucky to be so skinny when I am skinny because of health problems Going to school in pain and realizing other people don’t have any idea what this is like  Spine pain feels like spine is moving slowly, like braces on teeth Feeling pressured to work when my body is not well I wish I’d known it’s not normal Bad pain, acupuncture, experimenting with oils Threw up for the first time since January  Being happy isn’t only for the neurotypical ER doctors hate us Malingering, teachers thinking I was faking Low spoons from having to keep up with people who have near infinite spoons

March got better towards the end with more frequent massage and me getting very serious about my Ayurveda self-care routine. Yoga deep stretch 2x a day, strict rest breaks, lots of ashwagandha, etc. Sleep became difficult again, both at night and during the day. 

Neurological tics and SP Spine spoonie end of March Appreciate the time a spoonie gives you Emotional detox the past 4 years Low pain day despite stress and activity ?? didn’t have to medicate until 9pm Ashwagandha powder feeling changes Two days in a row of low pain and good brain function Survival is anything but typical More ashwa goodness Glass half full Suddenly back to being in bed most of the day Medical records showing just how incompetent my old docs were What does it mean to be strong? Spine swelling stealing my days I want a spinal implant Spoonies are always performing Losing friends when you get sick

Sesame oil and hot/cold pack life New vape cartridge for spine pain relief! Golden milk with ashwagandha every night!

Had a very busy week even with low pain days and got worn out after 6 days, high pain, but still great mood. I felt very positive and optimistic. Reality felt very strange with low pain. But I was back to my usual struggle the next week. 

I still feel very much like the only way people will take my health seriously is if I push myself into collapsing. Also spine is so noisy when I do my yoga. I got my tax return and I’m so thankful because I was able to stock up on pain relief products! But I’m still kinda worried about the neurological symptoms I’m having.

 I saw my new doctor and was really surprised.

4.12.17 3 month update and thoughts.

[consulting-celiac-in-the-tardis]

What It's Like to Be Diagnosed with Fibromyalgia at 11 Years Old

New blog post!

I remember crying in my mom's arms inside our darkly-lit kitchen. "I just want to sleep." I sobbed. "I just want to stop hurting."

I was eleven years old - and though I might not have known it at the time, it wasn't normal to be in pain 24 hours a day, seven days a week. But, then again, it isn't normal to be diagnosed with a chronic illness before your 13th birthday either.

THE BEGINNING

My journey with fibromyalgia - a chronic illness characterized by widespread muscle pain, fatigue, sleep problems and other symptoms - began even earlier than that night. I was a loud baby, often crying nonstop unless my mom was holding me. Some doctors have told me it may not have been just colic or neediness; I may have been in pain, even then. And, as horrible as it sounds, I smiled hearing that. Finally, it felt like all the puzzle pieces of my life were fitting together. When I later told my dad the same explanation, he didn't have the "ah-ha" look I expected. He looked sick. 

And now, as a 21-year-old, I can understand why. No one wants to imagine that their child has been sick their entire life...and you never knew. My mom has fibromyalgia, so autoimmune diseases weren't total strangers to my family. But, when it's a kid complaining of aches and pains, it's easy to find alternate causes. 

Like growing pains. Or soreness from PE. Or just childlike exaggeration. 

When did boo-boos turn into something a lot more sinister? Ironically enough, I fell into my fibromyalgia diagnosis...almost literally. 

THE TURNING POINT

I was part of an indoor soccer league, and coaches had propped up gymnasium mats to create the "field" boundaries. Practice was almost over, and I was dying for water. I jumped over the mat...only for my toe to catch and for me to slam against the gym floor. I was shaken and crying, as normal, and my wrist was tender. But, hours later, it didn't overly swell, and I wasn't crying anymore.

We probably wouldn't have even gone to the emergency room the next morning if my mom wasn't the "dot-your-i's-cross-your-t's" kind of woman. And when we finally saw the doctor, he didn't expect much...but he did the X-rays anyway.

The next thing I know, I'm in a hospital room with surgery scheduled within the next few hours. I've turned into quite the celebrity: I'd not only fractured my wrist but also dislocated all the fingers and thumb of my right hand. "She should be screaming in pain," doctors told my mom. 

Later, she asked me why I wasn't. I shrugged and said: "It only hurts as much as my back on a bad day."

FIGHTING FOR A DIAGNOSIS

I had the surgery, rocked a purple cast until I almost went crazy (from the itching and otherwise), and my wrist healed. In fact, the only "tell" that anything ever went wrong is a crooked pinky. However, my doctor's visits were anything but over. 

Around this time, insomnia started. I didn't know it was another symptom of fibromyalgia. I just knew that I wanted - needed - to finally sleep. 

One of the hardest parts about fibromyalgia? Unlike other diseases - like celiac disease, for instance - there's no blood test or objective method of diagnosis. It often begins with complaints of pain, fatigue or insomnia to your primary physician. If you're lucky (or you have a very insistent mother), they'll give you a referral to a rheumatologist. 

What happens next? Back when I was diagnosed, there was more talking and, perhaps most importantly, the "trigger point test" that functioned as the main way to diagnose fibromyalgia. Basically, it involves the doctor poking you at certain places in your body, like right above the breasts (or pectorals) and recording your tenderness. Nowadays, doctors also base diagnoses off of patients having widespread pain for three months or longer; showing other symptoms like fatigue; and not having any underlying condition that could cause the same symptoms.

Honestly, I forget how many doctors I went to before being diagnosed. We were living in a very rural part of North Carolina at the time, and my dad was serving a year-long deployment in Iraq. So, it was just my mom and me against various specialists whose favorite phrase with me always seemed to be: "I've never seen this before." 

I do remember, though, the day I received an official diagnosis. We were at a small doctor's office far from home, one that featured a rare child rheumatologist. I did the tests. I told her my story. And, for one of the first times, she believed me. I wasn't crazy or a child with an "active imagination." I was sick - and I probably always would be. But there was an actual illness to blame. 

POST-DIAGNOSIS LIFE

In a way, an official diagnosis changed everything - and nothing - at the same time. I finally received medication to help me sleep and lower my pain during flare-ups. I asked, and received, a referral for physical therapy. Although people's fibromyalgia symptoms may vary, mine mainly involve:

Debilitating headaches when my neck muscles get out of whack (due to anything from staying in the same position too long to exercising too little to exercising too much)  

Varying degrees of shooting or aching pains down my spine and on my hips 

Longer recovery times/soreness after exercise

Sensitivity to cold and the need for more sleep than the average person (and especially more than the average college student)

The treatments I received definitely helped lower how much I felt like a zombie or how often I wanted to cry from pain. However, my fibromyalgia certainly didn't "disappear." I still was in pain most days, especially during weather changes. When I exercised or played soccer, I still needed to soak in Epsom salt to help my muscles recover more "normally." 

Ironically enough, the life change that helped my fibromyalgia pain the most wasn't a new medication or stretching routine. It was being diagnosed with another chronic illness at the age of 17. 

HOW MY CELIAC DIAGNOSIS HELPED MY FIBROMYALGIA SYMPTOMS

As those who've been following this blog know, my celiac disease diagnosis wasn't easy. I didn't heal "like normal" when I initially went gluten free. I lost 20 pounds when I only weighed 106 at 5'3" to begin with. I was hospitalized my freshman year of college and needed a feeding tube to eat. 

Yet, it's impossible to deny how my celiac disease has transformed my health for the better. 

At first, the gluten free diet didn't seem to help much. As months past, though, I noticed something strange. I was getting stronger. I was gaining back weight. I wasn't in 24/7 pain. 

Although pain has been a constant part of life, I almost didn't notice when it diminished. It was only when I tweaked a muscle and got that same pounding headache that I realized: I haven't had one of these in awhile...

I was also able to exercise without being overly sore the next day, and I could touch points of my body that nearly made my scream before. My mom, who tested negative for the celiac gene but went gluten free with me, experienced similar changes: more energy, less pain. 

Of course, I'm not saying that the gluten free diet "cured" our fibromyalgia. We still have flare ups, have to watch how hard we push our bodies and live in varying degrees of pain. However, we finally found some kind of relief...and I'm always reminded of just how far I've come when a flare-up hits. 

We're not the only people with fibromyalgia who've benefited from a gluten free diet. Various small studies have found signs of improvement in fibromyalgia patients who follow gluten-free diets, and more people with fibromyalgia are sharing their success stories. Do I think every fibro warrior should ditch gluten? No; every person is different and thrives on a different diet. However, you never know what experimenting with a low-gluten or gluten-free diet could reveal. 

TODAY

If I had to describe my view toward my chronic illnesses today, I'd use one word: "grateful." I am grateful for the mom who believed her daughter was truly in pain. I'm grateful for the doctors who diagnosed me, even though "it's extremely rare to find fibromyalgia in someone so young." (Can't tell you how many times I heard that.) Most importantly, I'm grateful for all that my chronic illnesses have taught me.

Fibromyalgia has taught me how to persevere despite pain; how to empathize with people whose illnesses might not be clear to the naked eye; and how to listen to my body while stretching its boundaries. Meanwhile, celiac disease gave me the resolve I likely would've lacked to go gluten free (even if I'd heard of its fibro benefits), and has continued to teach me to love cooking, adapt to restrictions and advocate for my own health. 

What do I hope you take away from my story? A few things:

First, chronic illnesses aren't just adult diseases. Kids can suffer from them too - and their complaints of pain or other medical problems deserve to be heard and believed. 

Second, give people the benefit of the doubt - on Fibromyalgia Awareness Day this May 12 and every other day of the year. We may not look sick, but we might be struggling more than you ever imagined. Like this article? Spread fibromyalgia awareness by clicking this to tweet: "This #celiac gets real about her #fibromyalgia diagnosis - at 11 years old. Remember: an #invisibleillness is still real! #chronicillness."

Finally? Find the silver lining in your own chronic illness. Medical diagnoses are never easy...but you never know what blessings might result from them. 

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