#but other than that and the tachycardia I test negative for everything

[tj-crochets]

Hey y'all! Weird question time, this time about hives. I have to get into some detail in my description of the hives, so it's going below a read more

So I used to get hives all the time. Like, a few every now and then through winter, gearing up to get bad mid-April, and then late June/early July they'd tip over into anaphylaxis, I'd go to urgent care for steroids, and then I'd a month or two of no hives before going into the slowly ramping up low level hives mode again until the next year. I'm pretty sure I have MCAS, I have like all the symptoms of severe allergies and have even been able to pin them down to specific foods but test negative for all IgE allergy testing (besides dust and cockroaches). Since I've been on higher-than-normal doses of daily antihistamines, I almost never get hives anymore My question: do I have the definition of hives right? Are these how hives go for you? My hives were: - raised, red/pink, and noticeably hotter to the touch than surrounding skin - most were about quarter sized, the smallest maybe the size of a pencil eraser, the biggest the size of a handprint - they had clearly visible edges - the ones on my fingers and toes were sometimes severe enough that the swelling of the hive prevented me from bending the joint - extremely itchy - each individual hive lasted about 24 hours, but I had a constant rotating cast of hives - larger hives turned into yellow bruises when the hive went down - they almost always formed on joints first and only spread to non-joints if I was having a bad flareup (hips and wrists first, then backs of knees, fingers, toes, elbows, and ankles, then eyes and ears, then everywhere else, but almost never my chest, back, or stomach) My endocrinologist seems convinced the joints-first hive pattern is indicative of an autoimmune issue, but I have zero issues with my joints* and test negative for RA like three different ways *well. I have mild scoliosis (maybe) and almost definitely dislocated a rib at least once, but those are not really autoimmune related? I also sometimes have joint pain but only when my muscles are so tight they are hauling on my bones and like...that's not the joint's fault pretty much every doc I've seen is just like "yeah you do electrolytes wrong muscles don't like that :/"

[sebs-out-of-spoons]

💚♿️ Introduction Post ♿️💚

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Hi there, fellow spoonie! I’m Sebastian, and this is my blog for my diagnosis journey. Welcome! <3

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Things To Be Diagnosed

Physical

Hyperglycemia or Hypoglycemia (We aren’t sure yet)

Gastroparesis (Likely)

IBS (Irritable Bowel Syndrome) (Likely)

POTS (Postural Orthostatic Tachycardia Syndrome) (Was tested, came back with no indicators, the doctor was an asshat, so planning to test in other ways to make sure)

hEDS (Hypermobile Ehlers-Danlos Syndrome) (Was tested, came back without enough indicators, the doctor was an asshat and did a lot of it wrong, so planning to test again by someone else to make sure)

?MCAS (Mast Cell Activation Syndrome)? (Not too sure, but there seems to be some correlations, and will get it checked in the future just in case)

Mental

ASD (Autism Spectrum Disorder)

ADHD (Attention Deficit Hyperactive Disorder) (Combined Type)

C-PTSD (Complex Post-Traumatic Stress Disorder) or PTSD (Post-Traumatic Stress Disorder)

Pure O OCD (“Purely Obsessional” Obsessive-Compulsive Disorder)

SPD (Sensory Processing Disorder)

APD (Auditory Processing Disorder)

ARFID (Avoidant/Restrictive Food Intake Disorder)(Avoidant Type)

SAD (Social Anxiety Disorder) BDD (Body Dysmorphic Disorder)

Misophonia

Trichotillomania

Dermatillomania

SAD (Seasonal Affective Disorder)

Agoraphobia (“Mild”)

PDA (Pathological Demand Avoidance, or Persistent Drive for Autonomy)

Alexithymia

Hypersexuality

DPDR & Dissociative Amnesia

Overlapping

PMDD (Premenstrual Dysphoric Disorder)

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Already Diagnosed

MDD (Major Depressive Disorder)

GAD (Generalized Anxiety Disorder)

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About This Blog

I’ll probably mainly be posting about the progress on my physical diagnoses. I will be posting about PT, my chronic pain, chronic dislocations and subluxations, chronic fatigue, pre-syncope and co., and everything to do with my physical symptoms and struggles.

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More Things

I’m going in for PT twice a week, and I’m doing home exercises.

I had an appointment with my eye doctor on 10/14/2024. Prescription changed, slightly worse.

I had an appointment with a cardiologist on 11/4/2024 to figure out if I have POTS and hEDS as well, and came back negative for all, but the doctor was a medical gaslighter, so we’re getting things re-tested by someone different.

I had an appointment with a gender clinic on 11/4/2024 to start the process of diagnosing and treating my neurodivergencies, and it went really well.

I went for bloodwork today (9/20/2024), and I was tested for diabetes and more things, but I do not have it. The tests showed that I have poor liver function, so we’re doing things to start helping with that. We’re hoping to test for the hyperglycemia or hypoglycemia in the future sometime.

I went for a gynecologist appointment on 11/15/2024 for suspected PMDD, and am now on menstrual-suppressing medication.

I had an appointment with the gastroenterologist on 11/26/2024, and now we’re going for testing later on to confirm celiac, to make sure my thyroid is healthy and okay, and then testing for both IBS and Gastroparesis.

I had an appointment with a Gender Clinic on December 2nd of 2024 to discuss testosterone for in the future, gender dysphoria, and had a binder fitting. I’m being referred to an endocrinologist for testing to see my hormone levels and etc., and we’ll hopefully be able to get an appointment in January, maybe February, but hopefully sooner than all that.

I had an appointment with a Psychiatrist who specializes in ADHD and Autism, on December 4th of 2024, who gave us referrals to psychologists who also specialize in those, so that we can get testing for them both.

I have an appointment with an endocrinologist on January 29th to test hormone levels and hopefully get on testosterone ASAP.

I have an appointment with the AMPS Program to do mass overall testing of my body, and hopefully get referrals to specialists and options as to what’s going on.

I suffer from chronic pain, chronic dislocations & subluxations, chronic stomach issues, hypermobility (about an 6/9 on the Beighton Scale, plus hypermobility outside the Beighton Scale), chronic fatigue, and more stuff.

I own some mobility aids (forearm crutches & cane) and am hoping to get more in the future (specifically wheelchair, I’m saving up for it, but might be able to get it this or next year), and I have compression socks to help with blood pooling. I also have joint support braces to help during flare ups with subluxations and dislocations.

I am also celiac, have a dairy allergy, have environmental allergies, like dust, mold, and pollen, have random allergies like bananas, peanuts, eggs, any sort of concentrated sugars or things with lots of sugar in them (natural or added), specific adhesives, amoxicillin, random hand soaps, random hand sanitizers, certain kinds of bleach, random kinds of metals, kiwi, some deodorants, and random acne face washes.

I struggle with my eating due to my undiagnosed ARFID, POTS, and possible Gastroparesis. So, beware, I am always incredibly mood swingy due to that.

Daily Pain Scale

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About Me

I’m a Queer, Nonhuman, Neurodivergent, and Disabled Transman (He/It/Any Neos).

I’m 17-years-old, and feel 35 already.

I am taken by my amazing boyfriend, @sorensstuffs (He/It/Xe).

I have one sibling (Any Pronouns), who I won’t be tagging since he isn’t on here much.

I’m a reality shifter, and have shifted about 5 or 6 times (parallel realities).

I’m a beginner Dual Faith Polytheist. I am in contact w/ a lot of Gods, and have altars for a few. I do have religious trauma with Christianity/God/Jesus though, so if you’re heavy with that on your blog, please shoo shoo.

My Special Interests are: Wings Of Fire, Harry Potter (fuck the author, I’m mainly here for the dead gay wizards), Dragons, and currently my most active special interest is Neurodivergency & Disabilities.

My Current Hyperfixation is: Neurodivergency & Disabilities, specifically my own.

I’m queer in many ways: Trans (FTM), Genderqueer, Enby (and under the umbrella), Xenogender, AroAce (Homoalterous, Panqueerplatonic, Homoexteramo, Pansensual, Panaesthetic, Panplatonic), Polyamorous, T4T-leaning, and Lesboy.

I’m nonhuman in many ways as well: Polytherian, Polykin, Otherfix, Otherhearted, Otherflicker/Fictionflicker, Transspecies (radqueer fuck off), Humanfluid, Pseudohuman, Physical Nonhuman, and Voidpunk.

I love drawing, creating things, reading, and writing. Mainly, my hyperfixations and special interests take over my life, so I don’t have the energy or time for anything else (and then sometimes, my possible chronic illnesses take over my hyperfixations and special interests, and I’m not even able to muster energy to do them).

Tone tags/indicators are incredibly helpful for me, PLEASE USE THEM!

If you have any questions about anything, please ask me and I will not be bothered.

I don’t have the energy to make a DNI list, but just know that I will block you loads if you do fall under my mental DNI list.

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Userboxes:

(All credit to the original creators of the userboxes - I am hoping to individually credit them soon, I am just waiting for the energy to do so!)

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[snowandsage]

⚠️⚠️TRIGGER WARNING: ED, body image, depression, mental illness ⚠️⚠️

I would never in a million years post something like this to any of my other social media accounts but I’m proud of myself and how far I’ve come and want to make a post. It’s likely that this will be taken down for the “inappropriate photos” and I sincerely doubt that many will take the time to read this, but oh well. I’m writing this for me.

The purpose of this post is to share my story and spread awareness as well as positivity.

My body image is something that I have struggled with for a very long time now. Since middle school, I was overly aware of how my body looked and I developed severe body dysmorphia. I refused to wear bathing suits, I cried in the dressing room whenever I went clothes shopping, and I constantly compared myself to those around me. I hated my body and the way that I looked. This obsession with my appearance and my weight continued to progress throughout high school and even college. I began working out frequently, I logged my weight and everything that I ate for years, I counted calories, I would use a tape measure to measure my waste. At 15 years old, I would sob quietly to myself while looking at my body in the mirror. I would force myself to throw up after meals or when I felt like I overindulged. I wholeheartedly hated myself.

It wasn’t until my adult years that things started to get really bad. From 2021 to late 2022, I was at my absolute worst. I was in a bad place mentally and I was feeling out of control. As unhealthy as it sounds, my eating disorder was one of the few things that helped me feel in control of my life. I began weighing myself 4-5 times every day, my hair started falling out in large clumps, I began passing out almost on a daily basis (at home, at work, in the shower, in public), I was freezing cold all the time, i was chronically fatigued, and my body hurt and ached at all times. I was refusing to eat more than one full meal a day, and that meal typically consisted of a bagel with butter. I would look up the calories in ibuprofen before taking it, I started drinking my coffee black to avoid the calories from cream, I was constantly lying to my friends and family about my eating, I wouldn’t even let myself drink carbonated water because it made me feel bloated. I was so so so sick. Within one year, I had lost a total of 50 pounds, gone down 2 bra sizes, and had no longer fit in any of my clothing. I am a 6’3” woman and was weighing in at 124lbs when I decided that I needed to make a change if I wanted to live.

In November of 2022, I decided to actively work on getting better. I threw away my scale and called my doctor to get a referral to an ED program. I was advised to go completely inpatient considering the severity of my problem.

It’s hard. Every single day of this healing process has been hard for me. I have not once weighed myself since November and have been eating normal meals again. I refuse to let myself see the calories of the things that I eat and I’m pushing myself to break all of the unhealthy “rules” that I had previously made for myself. It’s obvious that I have gained quite a bit of weight since starting this journey, and although I still struggle with that and frequently have negative thoughts… I’m recovering and I’m trying. And that is all the matters.

I’ve slowly been learning to love myself with this new and improved body and I’m proud of myself for making it this far. I promise myself that I will continue to grow and heal even on days where I want to relapse or when I feel worthless or uncomfortable in my own skin.

I just recently learned some information that caused me to really, truly think about this terrible illness and how deeply and negatively it has, and always will, affect my life. About 3 weeks ago I wound up in the emergency department with severe heart palpitations, tachycardia, and vertigo. After doing an EKG and further testing, I was diagnosed with a rare heart condition in which can cause sudden fainting, seizures, or even sudden death. Unfortunately, one of the few things that can cause this, are eating disorders, more specifically anorexia nervosa. I wanted to throw up when I heard this. I didn’t realize how badly my ED could have been affecting my health. All that ever ran through my head was that I wanted to be skinny. I wanted to be thin because I didn’t feel worthy if I wasn’t. Surely, nobody would love me or want to see me naked if I wasn’t thin. What absolutely bullshit that is. I’m heartbroken for myself and I am so sad that I ever let myself get that bad. It devastates me to think about how many other people (men, women, young, old, etc.) struggle with eating disorders every waking minute of their lives. It isn’t worth it.

Please, please, please reach out to somebody if you are struggling with an eating disorder. You are so worth it and you deserve a chance at a happy and healthy life. You are SO much more than a number on a scale.

The first 5 photos are pictures that I took when I was at my unhealthiest and the remaining pictures are recent.

[crippledpunks]

Could you do a post on what fibro is and what signs someone should look for if they suspect they have it? I don’t know much about firbo other than Google’s vague symptom list. I would rather hear it from someone who has it anyways. Hope you have a great day!

thank you for coming to me, i appreciate it! i really do!

fibro is a difficult thing to figure out if you have or not- when asking your doctors about it, they try to rule out everything else it could possibly be first before considering fibro. doctors will test for things like lupus, rheumatoid arthritis, other kinds of arthritis, sleep apnea, narcolepsy, and many other things.

finally when all these things are ruled out, you're considered for the fibromyalgia diagnosis. i received mine in 2016, after doing a lot of tests. i knew i had it from the start, because the symptoms are so specific. not everyone has access to all of this medical care, and i know a lot of you don't have the time to go through all of this testing for a clinical diagnosis.

if you suspect you may have fibromyalgia, these are the most important symptoms to consider:

1.) overall, widespread pain and tender points on your body. people with fibro experience an overall, widespread pain that can't be explained by anything else, however, we also experience specific tender points. these are points on specific points of your body that are painful to the touch, and often ambiently radiate pain outward into the surrounding areas. it's the skin, muscle, and other tissues that are in pain, not the joints, but they can cause pain to radiate into the joint areas.

here is a diagram of where these points are on the body:

you don't have to experience all of them. i personally experience most of them.

2.) fatigue that can't be explained by something else, that is persistent, and doesn't improve with sleep. not feeling rested after sleep was what lead me to seek care, because no matter how much i improved my sleep hygiene, my fatigue never lessened or went away. i even got tested for sleep apnea, and that came back negative.

3.) "brain fog", also known as "fibro fog". this is exactly what it sounds like- an extreme fogginess in your cognition that makes it difficult to function. i was experiencing this fog very badly when i was first seeking diagnosis. it comes and goes, some days i feel better, other days it's like my head is full of cotton, or like someone is in there running a fog machine.

4.) chronic migraines and consistent headaches that usually don't improve with sleep and often highly resistant to medication. i have a low- to mid-grade headache every single day. migraines are extremely common with me, even on days where, again, i've slept well. these headaches are crippling and always have been. i've been medicated for migraines since i was 15 years old.

5.) restless legs, joint stiffness, morning stiffness, and swelling and tingling in the hands and feet and aren't explained by anything else. the random swelling and tingling in my hands and feet used to stress me out because i was afraid it was related to my heart, but it's always completely random and goes away pretty abruptly.

fibromyalgia is also highly co-morbid with conditions such as post traumatic stress disorder, anxiety, depression, chronic fatigue syndrome, irritable bowel syndrome, and postural tachycardia syndrome.

i hope this was what you were looking for!

[asherlockstudy]

Fair warning: this is an unpleasant post about my health and it might be a trigger to some. I just needed to get it out there, even if nobody reads this, I just had to.

This is the worst spring of my life so far. I am diagnosed with GERD, hiatal hernia and mild IBS. Or mild it was.

This spring I might have contracted some viral infection or most likely it was my severe anxiety that caused an unprecedented flare up of my IBS, which had always been extremely mild, almost unnoticeable.

For the last two months:

I can't breathe - especially deeply. My belly won't extend.

My chest hurts and burns and stings and I feel like an elephant sits on me.

My esophagus or stomach feels like it's getting strangled. It is twisting 24/7.

Pain extends to my heart and my back.

My back feels like it is on fire.

I have frequently a temperature of 37+/- 0,2 C which is technically normal but it is high for me and it feels uncomfortable. I actually feel like I am on fire regardless of the temperature.

I have acid reflux.

I have constipated diarrhea - for real.

But mostly it's just constipation that makes my intestines hurt like crazy.

I can't eat sitting down and without sweating.

During my worst days which are the majority I only sleep when I basically faint from exhaustion.

I cry all the time. About everything but mostly about my state.

Bowel movements don't bring me relief - they make me much much worse.

The bloating is so extreme that I feel like I am about to explode at any moment and the organs will tear apart. I burp like 4500000 times per day. And it doesn't sound like a burp, it sounds like plain air release from a balloon or something. I can't expel the rest of the trapped gas (u know which one) to fucking save my life - literally. Despite all that, my belly is not visibly very distended... which I fear makes me feel even worse. At this point it feels like the trapped gas has created negative pressure inside the intestines and it only keeps increasing.

I started having PMS symptoms out of nowhere too. My breasts got swollen, heavy, painful while my nipples had needle sensations. A few days ago my abdomen got so swollen and painful that it abruptly stopped my period during its heaviest flow. I was without period for two days and now I am getting the old dark blood.

The pain in the chest or around the heart is terrifying. Sometimes it feels hot and sometimes like something cold expands deep inside me.

I have tachycardia or bradycardia and heart palpitations depending on IBS's mood.

I am exhausted. Even walking from one corner of the room to the other makes me tired most days. The quality and duration of my sleep have no effect on my fatigue.

Pain killers don't help. Antispasmodics bearly do. Freaking narcotics don't either.

I have been trying the IBS low FODMAP diet for three weeks now... I see more worsening than improvement.

And now the crazy stuff: I have been to a GP, two gastroenterologists, a cardiologist, a microbiologist and hospitalised. After they examine me, they all ask the same thing: "Why are you so stressed?". I hate this so much I want to pull my hair off when I hear it.

I am taking my temperature and oxygen levels every day. I have had two ECGs, a heart CT, rib & lung CT, upper abdomen CT and two detailed blood tests. All looks fine except for the large intestine which looks like crap *get it?*. Both gastroenterologists avoid giving me endoscopies because they are convinced it's just IBS but I can't shake off my fears. Could you, if you were in my place? I am offering them money, and they refuse it because they are THAT sure.

Now the things I can't do:

I can't eat whatever and however I want. I can't sleep, I can't exercise, I can't bend, I can't lift anything, I can't read a book or watch a movie or a show, I can't do chores, I can't draw and paint in the new tablet my friends gifted me. I can't talk to my friends because I am in such a poor state. I can't take good care of myself, I can't play that videogame I literally bought a subscription for. I struggle to dress myself and I need help to put my shoes on. I can't post the things I wanted to here (gifs for rhink and theory for Jaime Lannister and ASOIAF). I can't find much relief in Rhett and Link content anymore (who incidentally drove me through another hard time in the past). I can't keep track of my queues and my blogs anymore. I have no idea what is posted and when. And I can't answer to some messages and tag games that some good people have sent me.

This is how I am doing these days. My thoughts go to those who live with chronic pain and diseases and I shiver at the thought that this might be long term for me too. I don't know what to do. I have what I used to call a fierce survival instinct but my mind lately has become a grim place.

[namjoonchronicles]

Torches - [BTS] Boyfie!Namjoon Au

[A/N] Writing about my bias as a boyfriend/husband? Lovely tol.

He walked in as quietly as he could, trying not to wake you up. Don’t her neck hurt from sleeping like that? Look at her burying her face in the books. That’s my girl.

Why is this room so bright when she’s sleeping? Should I dim the light? Would she hate that? Did she plan to continue studying whenever she comes awake?

Namjoon shakes his head, looking at your state. Notes everywhere, even on the floor of your study room. The curtains are left open to let you know whether it’s day or night. You hardly leave the room. He didn’t remember if you’ve eaten or not. You better not be living on coffee alone.

He spoke too soon. There’s two unwashed mugs. One is empty, the other is half-filled. “She’s gonna have migraine at this rate.” He commented, picking up all the notes from the floor, carefully arranging it in his hands. “Isn’t this too much.” He was complaining on his own. Namjoon was very worried. He knew that you were desperate, but he didn’t know that you’d go to great lengths. Not eating, barely sleeping, not leaving the house. It a downright, highway to self-destruction, if he’d put it out honestly.

“Harness the great.” One of the notes you wrote. “I have to stay awake.” You wrote at the bottom of the second paper. “This is not studying. This is killing yourself.” Namjoon pinches the paper and held them up. The laptop has shut down on its own due to inactivity, and your paper bin is full of crumpled notes. Namjoon took them out for you, tying the plastic bag and placed a fresh and new set of bin for you to use.

Does she have enough pens to use? What is this laying around? A coffee candy? Seriously. Can someone die from caffeine overdose? Yes. It happens from over acceleration of heart beat, a tachycardia. A medical conditions where the heart has irregular heart patterns if tested on ECG.

What 7 years in medical school could teach Namjoon. It’s his only day off, and the hospital granted him another day because he asked for it. As one of the most aspiring surgeon, and one of the youngest, the hospital would grant him pretty much everything. Namjoon is a humble, intelligent doctor who happens to be a boyfriend to a struggling has-been student. But he believed in you more than anyone else. Even if you shake him, break him, push him, he always returns. He wore his heart on the sleeves when it comes to you. Love is an investment, anyways. Whether it becomes profitable or a huge failure, Namjoon is prepared for both. But for now, Namjoon wants to love you. His heart chose you.

Examination is in three months. It explains the mess. You’re doing the all-out session for yourself. Going back to college-entrance exams is difficult enough. You were the oldest in the bunch and by the time you’d be doing your degree, you’d be a grandma, metaphorically speaking.

You think Namjoon hasn’t talk you out of it? It was all Namjoon ever did.

Don’t have to do the degree. I’ll work, you stay home. I’ll make the money. You spend it.

But this was never about the money, was it? No. You had potentials only you could see. And after awhile, Namjoon starts to see it too. So he made you pursue your dreams. Time is just an illusion. “Just don’t go running to your younger classmates.” Namjoon warned. And you’ve been faithful. It’s very nice to have Namjoon around, a very understanding boyfriend, someone you could have fun with, who is up for cuddles at any given time of the day. Namjoon himself a smart young men, who would never understand the struggle of a mediocre class such as yourself. Namjoon looks at you and sighed inwardly, putting one knee on the floor, as he cleans up the mess you were in. “I really hope you’re not tormenting yourself.” He prayed.

His random humming finally stirred you awake in your chair and you slapped your hand to the back of your neck, easing the constant strains on them. The muscles felt sore and very stiff. Blinking your eyes a few times, you caught Namjoon standing up, turning the chair you sat in to face him. “Morning.” You mewled, hugging his arm, and nuzzling your face to his soft knitted grey sweater. It’s warm and fuzzy just like he is. “It’s actually 6pm. In the evening.” He corrected you. “What?” You were dazed. He fetches your phone from the desk and showed you the time, 6.30pm. Shit. You had to cover three chapters today. You did two yesterday, how many more left?

You started to fake cry, “...I was supposed to study chapter 3 today and now look at the time. It’s all done now, I’m finished. Now the schedules is in shreds…”

Namjoon brought your head to his stomach and rubbed it gently. “No it’s not. You need to take a break, you’ve been studying continuously, your brains needs a break.” You clawed his shirt, tugging it, “I don’t need a break I need a degree.” You cried. Namjoon sighed and backed away from you. “Remember when I tell you that, when you stress level is here,” he puts his hand on the level of his chest, “I will take you on a spontaneous vacation?”

You nodded as an answer. “Well, it’s up to here now,” Namjoon makes a bomb motion with both his hands, “...I don’t think a vacation is going to save us. We need to leave this country.” Namjoon said, in a serious tone and you bursted laughing. He tends to be over-dramatic with these things and it’s just so funny, the way he makes them, out of this world. But that’s why you love him. He makes things that seemed important, to look petty. Getting a degree is important. Studying is important. But nothing is more important than mental health. And that was something you have been struggling with, for awhile. Mental health of a student. You absorbed knowledge like a sponge but it doesn’t stay for long.

That’s why repetition is important for you.

Namjoon carries you out of the room. “The moon, the sun and the stars misses you, so you’re going to go and say hi to them.” He places your feet on the balcony and you almost fell after not walking for far too long. You glued yourself to the chair for so long, stepping was difficult. Namjoon held your arm to balance you as you approached the rail. “I want to buy groceries.” You suddenly say. And Namjoon beamed a proud smile. “We’re not eating instant noodles today.” You fisted the air, jumping, skipping on your way down the alley, much to Namjoon’s happiness. Seeing you joyfully enjoying life is feeding his soul. It’s been awhile since I saw that smile.

Making your way to the nearest convenient store, you were at awe at everything. Has this moon been this bright? Has it been this many stars all along? And when you caught Namjoon’s face shone by his cell phone screen, you smiled appreciatively. Namjoon is just texting Taehyung about how he can’t attend the dinner tonight because he had something to do. “I’m so in love with your beautiful soul.” You whispered. Namjoon perked his eyebrow, catching some of his attentions on you but wasn’t quick enough to decipher the words you just said. “What? You said something, honey?” He asked, tapping close on all the tabs of his phone. Without saying anything else, Namjoon took your wrist and loosely held your palm, lacing his fingers with yours, as you swung his hands, walking down the street.

“Do you regret being with me?” You asked. “Honestly?” He asked. You nodded. He continued, “No.”

“Handsome guys likes pretty girls. Smart guys like intelligent girls. I’m neither pretty or smart.” You hummed to yourself. Insecurities were something that has been around you for years. It was something that grew within you, through the upbringing of a highly-criticizing family members, that constantly compare your beauty, intelligence and possibility to succeed with others. It’s soul-draining and emotionally-damaging. The words of encouragement that didn’t come from the source you trusted fully. All they know is that, you’ll work hard for they want. And when you moved out of your parent’s place, things were difficult in the beginning. But solidarity brought something else out of you: peace and serenity.

This time, you study, not because of your parents, not because of the degree, but to prove to them the power of determination and the deadly feeling of vengeance. You study because of you, and that was what made the difference. Namjoon is the cherry on top.

“Do you know why I stayed around?” Namjoon started.

“Because you’re so determined. You don’t care about failing, you only know how to move forward. You think it’s easy to pick up all the pieces and try to live in a very discouraging world? You think it’s simple, to just take the criticism and all of that negativity, and turn it into a driving force? No. It’s not easy. But you were doing it. You’re doing everything I would have been frightened to do. You’re so brave. And I know I pay no credits to all that you are today, and I hope…” he pauses in his steps and waited for you to face him.

“...that I’m not too late to join the ride to your road of freaking awesomeness, my queen.” He brought your knuckles up his lip and kissed them, tenderly, closing his eyes as he does. “I am nothing but a low servant to your reign.” Namjoon depicted words from a medieval novel and just made your heart skipped a beat when he stares you down with those inviting pair of orbs. “...Did I make your heart flutter.” He perked an eyebrow at you and you slapped his chest before escaping to the convenient 24 hours store.

“Guess I did.” Namjoon grinned.

Namjoon is a torch in the dark. When everything is dark and cold, he was the only thing that’s shining and warm. Breathing in Namjoon, is like a breath of fresh air. His presence is like a missing piece inside of you, that found home. It settles and fits in, like the space is made for him. You have been waiting your whole life for someone who felt like him.

“Namjoon, thank you. For believing in me when no one else does.”

[jewelrymkr]

Hello Luvs,

Back in 1999, I left my career as an Interpreter for the Deaf and had to go on disability. I was approved first attempt and that doesn’t happen often. When I was set to go to the appointment with the physicians from the SSDI, they called the day prior to my appointment and spoke to my husband. They told him that they received my team of physician’s reports. They let him know that I did not have to attend that appointment because they said “Suzanne is the worst case of childhood trauma/abuse that we’ve seen in the past 36 years.  We don’t want her to have to tell her story to even one more person.”  I was approved and then things got medically worse from there.  In 2002, I was in the car with my husband, on our way to have a little dinner out alone together & a man ran through a red light.  Within seconds, our lives changed forever!

I was unconscious for about 20 – 30 minutes, I am told. I awakened a couple of times in the ambulance and again at the hospital. But I have no other memories of that day except for extreme pain and hearing my own screams during the X-ray exams. I was really lucky that my husband was unhurt and that the kids were not in the car. I spent the next 3 years in daily brain injury rehabilitation.  Also, I spent the following 8 1/2 years in Physical and Occupational Therapy along with going through approximately 8 or 9 surgeries.  I had knee surgeries, open shoulder surgery including 2 screws in my left shoulder, 2 torn rotator cuffs and then Adhesive Capsulitis. There were mouth, jaw and left facial surgeries, along with 2 pacemakers and total pectoral reconstruction.  I endured many hours of MRI’s and other more invasive tests. After the pacemaker, I had to undergo the painful, barbaric and old CT Arthrograms in both shoulders and both of my knees. I can no longer have an MRI due to the pacemaker.  As far as aids for daily living, I ended up with 2 AFO’s (ankle foot orthotic braces for foot drop), a shoulder brace (for nerve damage, pain & winged scapula) for very painful Long Thoracic Nerve Neuropathy, wrist brace (R), 2 forearm/hand/wrist braces for night time, a wheelchair, seated walker, motorized scooter, forearm crutches and a cane. All of which are still used today intermittently, depending on the activity.

In 2003, I got a pacemaker because I’d been fainting constantly. I was found to have a heart issue called “Sick Sinus Node Syndrome”, along with Dysautonomia, POTS (Postural Orthostatic Tachycardia Syndrome) and Prinzmetal Angina. Later in 2005, I had a heart attack. They found it to be a very real heart attack, but it was caused from something called “Broken heart Syndrome”. For this I won’t go into details, but I was also diagnosed with Atrial Fibrillation and was put on blood thinners. Then in 2006, I suffered a CVA or a stroke due to the A-fib. I was put on a higher dosage of the blood thinners. Then in 2007, I had right foot surgery and came out with worse pain than before I went in. I was told that I had RSD/CRPS or “Complex Regional Pain Syndrome” in my right foot at my 6 week, post-op check up. I couldn’t believe it!  After I read up on the disease, I decided to get a second opinion. The foot/ankle Orthopedic Dr. agreed with that diagnosis and he sent me directly back to the pain clinic.  I had first gone to the pain clinic for:  cervical and lumbar herniated/bulging discs, Degenerative Disc disease, Scoliosis, Long Thoracic Nerve Neuropathy, PolyNeuropathy In Collagen Vascular disease (*which is really the same as EDS type IV-Vascular) & Chiari I etc.,right after that car accident. I went through epidural nerve blocks, trigger point injections and much more. The pain clinic saw me for those first several years but later turned me over to my G.P., because I was a patient with true high pain issues but not a candidate for an SCS (spinal cord stimulator) or an intrathecal pain pump because it was determined that I have C.I.D. or “Combined Immune Deficiency Disease”. I can contract an infection in my spine more easily than the average person and/or become paralyzed. I was put on pain medication that I had tried to refuse several times; because I was afraid of it at first. Sometimes we are afraid of the unknown and I’d never had pain medication prior to that time except for during my C-Sections. I received a letter from the pain clinic’s, Pain Psychologist, stating that “I do not have an addictive personality”. I took the pain medications and after many many attempts with bad side effects, swelling, vomiting, fainting etc.; we finally found some pain medication that helps me and it lowers my chronic & CRPS pain.

Luckily, the auto insurance paid for drivers to take me to and from the TBI rehab and all of my numerous medical appointments. I suffered a Traumatic Brain Injury and had to endure several of those long Neuro-Psych testing sessions for years. They always ended with the same comments, which were:  “short term memory is in the toilet, problem solving difficulties, emotional difficulties (because I cry more easily), concentration is very low “, and more.  Nothing has improved very much, in those areas since that time.  As far as the TBI goes; I’ve just learned to live with it and adapt. At the time of the car accident, I was in the middle of reading the 5th “Harry Potter” book. I could not & cannot read those books any longer. When I put down a book and go back to start reading it again; I find that I’ve forgotten everything I had already read. I do best with articles and short stories now and that’s just how it is and how I’ve had to adapt. The TBI or Brain Injury Rehabilitation center did not cure me, but did teach me how to adapt and live with my brain injury. Nobody who meets me can tell that anything like that is wrong with me. But the persons around me often or those who live with me can clearly see the differences from before the MVA and now.  I cannot remember movies and can see the same movie several times.  If you tell me something today, I won’t remember it next week and probably not tomorrow. I cannot remember anything short term, unless I write it down. I don’t remember appointments or some other information that I’m told.  I feel very bad when I meet new friends, especially online “friends”.  When people have similar names, I get confused and feel embarrassed. They’ll say “remember me, from —?” But I truly don’t and I feel so bad. But if I feel comfortable, I just tell them about my TBI and ask for clarification. It’s sad because even new physicians will say “Well, at least you look good”! Or they’ll put on their report that “patient doesn’t look sickly”. What a stupid thing to put on a Dr.’s report!  I have recently been diagnosed with Gastroparesis and you can’t see it!  Suppose a person has a heart &/or lung condition, you would not “SEE” that and they might appear to be “not sickly”.  It is what’s happening on the inside, that is important.

The brain injury has caused several of my medical problems/issues as well. I was evidently born with “Arnold Chiari Malformation I” because they found it on the MRI’s s/p the MVA. But it was “sleeping”, they told me; and after the accident, it was “awakened”.  Since then,  it’s been difficult to hold my head up for long periods of time without pain and weakness. I get something called “Chiari Migraines” in back of my head and neck; which are very painful and cause nausea and at times vomiting.  I also have eye/vision problems due to the TBI, including: a Convergence Insufficiency, lowered vision,  extreme dry eyes and Nystagmus. The Convergence Insufficiency means that my eyes won’t work together as a team and get fatigued easily. The other issues are self explanatory, except the Nystagmus. It means that my eyes sometimes shake a bit, when looking to the right, left, upwards and downwards without moving my head. I’ve had punctal plugs put in my eyes several times and had prisms in my glasses s/p the MVA for a couple of years.

I went to University and graduated with honors in Sign Language Studies/Interpreting.  I worked for a local school district’s Hearing impaired program and at a Major University hospital as an Interpreter for the Deaf; prior to my TBI & other injuiries. I went from being an Interpreter for the Deaf, to a Hearing Impaired person  with 2 hearing aids. Prior to the TBI, I remembered phone numbers and other data.  Now I depend on my smart phone, using:  Google, reminders, Notepad and “Siri” on a daily basis, along with the Calendar features.

I try to be a person who uses “Hope” as a verb. That is my slogan, as I’d said in one of my other articles. You must “do” something in order to help yourself “Keep Hope Alive”. This is a venue for me to hopefully help as many other chronic pain patients as possible. I try to be as positive as I’m able to be. But on any given day, I can feel negativity creep in as some of you do. I know we can all have that happen. It’s what we do with that negativity that matters. We can lash out at others like my ill mother did. Or we can take the negative thoughts and throw them out the window as far away from us as possible!!  Sure, there are those darker days, but like a Phoenix, we must rise up against this monster called “Chronic Pain”.

From Interpreter for The Deaf To Hearing Impaired, in 10 Seconds! Hello Luvs, Back in 1999, I left my career as an Interpreter for the Deaf and had to go on disability.