#Once again probably due to the hypermobility!

[ratcandy]

had a conversation with my mom and now i'm curious

If unsure, go grab yourself a pencil and compare to these examples:

"Correct" ways to hold a pencil:

(if you didn't know there were names for these, yea I had no idea either until I started looking stuff up lmao)

"Wrong" ways to hold a pencil:

I'm mostly curious as someone who has always held her pencil wrong. No matter what teachers/my mom ever did to try and teach me (pencil grips, elastic bands, etc) it just never worked. I wanna know how universal this experience is hdKJH

(rb for sample size, etc etc, the usual)

[jayssillycreativitybox]

Hey everyone, long time no see huh? Suppose it's been quite the time since I last posted on Tumblr.

To be frank I really don't mean to disappear out of nowhere from Tumblr and then pop back in with a new digital drawing of a goofy character or some traditional doodles and disappear once again

Life has been hard if it helps for some to understand, it's probably useless to write to people who follow me on yet another excuse on why I vanished off the internet-

College started a couple of weeks ago and to be honest it has slapped me in the face- (it feels more like a year of college). College hasn't been quite the same as school was, you get a lot of homework but they are big and you gotta write a lot of essays and for my already sleep deprived ass it is hard-

Due to me being so drained from going to college I began to notice that my hobbies (art) hasn't been so easy to do in my free time because now I'm resting more than I am doing things I love.

I can occasionally make a small doodle or a digital artwork but it's not as frequent as before and I then forget to post it on tumblr-

My mental stability hasn't been well either and I can feel shitty if not for people who are there to be the light in the dark for me. My mood has been low and it's probably because I'm not eating as much or sleeping.

My body feels like it's breaking down as well- constant joint cracking, I'm tired all the time. I most likely have hypermobility, which my parents say I do have they just don't want to give a real doctor's diagnosis,and I have signs of it. That may be the problem for some of the shitty wellbeing I got and pains.

Yes I'm not dead, just not in a very good state at the moment. Sorry if some of you didn't want to hear my ass ramble about my problems-

I hope you all have a wonderful day today and you all take care of yourselves!

[frank-a-mori-son]

“Extremely detailed character sheet template”

Character Chart

Character’s full name: Frank Daniel Morrison Reason or meaning of name: The name Frank is after his Grandmother, Francesca and Daniel is his Fathers name. Character’s nickname: Killer, Frankie, “Hey asshole!”  Reason for nickname: First for obvious reasons, second also, last one is just heard enough for it to be. Birth date: February 14th 1977

Physical appearance

Age: 19 years old How old does he/she appear: he could be confused for someone down to the age of 16. Weight: 65 kg/ 130 pounds Height: 173 cm/ 5′8′’ Body build: Lithe but athletic Shape of face: Heart Shaped Eye color: Brown Glasses or contacts: None, but he’ll need it once older Skin tone: White with neutral undertone Distinguishing marks:  2 visible facial scars, beautymark under right eye Predominant features: Large neck tattoo Hair color: Brown Type of hair: Straight Hairstyle: Currently an undercut Voice: Tenor voice Overall attractiveness: He’s got rouge-ish charms, so pretty attractive Physical disabilities:  Hypermobility in his joints, unknown condition. Usual fashion of dress: Pretty casual, borderlining grunge and punk rock Favorite outfit: band tshirt, faux leather jacket and jeans Jewelry or accessories: He’d love piercings but has none, always wears some type of gloves.

Personality

Good personality traits: Resillient, loyal, brave and charismatic Bad personality traits: Bad temper, snarky, self critical Mood character is most often in: Agitated Sense of humor: Dick jokes and slap stick Character’s greatest joy in life: Making decisions for himself Character’s greatest fear: Becoming his parents Why? Due to how they ruined not only their lives, but that of an innocent child too. What single event would most throw this character’s life into complete turmoil? At this point that has already happened, making a grave mistake with unthinkable consequences...  Character is most at ease when: With people he trusts/cares about or if completely unnoticed Most ill at ease when: Overwhelmed by attention from strangers, feeling judged by peers. Enraged when: Made fun of, harrassed, hit or when someone he cares about is hurt. Depressed or sad when: Thinking of past mistakes, regrets and worrying about present/future. Priorities: Himself and those closest to him Life philosophy: Enjoy while it lasts, they or you won’t be around forever. If granted one wish, it would be: Freedom for those he cares for. Why? They do not deserve to be trapped in this realm, but he feels he does. Character’s soft spot: Quentin, Susie and dogs. Is this soft spot obvious to others? Quentin is very obvious to most Greatest strength: His will to keep fighting Greatest vulnerability or weakness: His own mental health and trauma Biggest regret: Dragging his Legion down with him Minor regret: Failing at ending himself Biggest accomplishment: Accepting his own sexuality Minor accomplishment: When he made it onto the basket ball team Past failures he/she would be embarrassed to have people know about: The one time he got himself roofied on accident Why? he was trying to impress some older kids and failed badly. Character’s darkest secret: The fact he killed someone. Does anyone else know? His Legion and Quentin knows

Goals

Drives and motivations: Motivated to keep himself and those he cares for safe in the Entity realm. Immediate goals: Spend as much time with his boyfriend as possible, get many smooches Long term goals: Somehow, find a way out of the Entity realm. How the character plans to accomplish these goals: He has no idea, but he knows he can count on Quen to help How other characters will be affected: Hopefully, it’ll be a positive effect

Past

Hometown: Calgary, Canada Type of childhood: Rough and unstable Pets: None First memory: Being locked in his bedroom, the stench of sweetened smoke coming through the door crack and loud angry shouting from below. Most important childhood memory: His Grandma coming by on Christmas morning with a gift for him Why: because it was the first time he got a gift for xmas, it was sadly also the last time he saw his Grandma. Childhood hero: He really looked up to one specific foster dad, a good man. Dream job: Veterinarian  Education: High School Dropout Religion: Christian but not practising Finances: Shaky at best, below poverty line.

Present

Current location: Ormond, Canada Currently living with: Foster dad, Clive Anderson Pets: None unless you count house flies Religion: Agnostic Occupation: Unemployed Finances: None existing. 

Family

Mother: Lorraine Beatrice Morrison Relationship with her: Strained, disconnected Father: Daniel Patrick Montgomery Relationship with him: Tense and disconnected Siblings: Step-sister, Step-brother (both Fathers side) Relationship with them: None, he doesn’t know about them. Spouse: Quentin is his boyfriend Relationship with him/her: Good! very good, they’re very much in love. Children: None Relationship with them: Nothing Other important family members: Grandparents (Mothers side) who are still alive and miss their grandson.

Favorites

Color: Red, black and green Least favorite color: Pink and yellow Music: Death metal, Rock, Punk, retro Food: He’ll eat pretty much anything, has a huge sweet tooth Literature: He’s not a fast reader, so he doesn’t read. Form of entertainment: out with friends, listening to music, exploring and sports. Expressions: “Well, fuck” and “heck!”  Mode of transportation: Other people’s cars, otherwise, his own two feet. Most prized possession: His faux leather jacket, as it’s bought with money he earned honestly. 

Habits

Hobbies: Basket ball, art and climbing Plays a musical instrument? No, but he would’ve loved to learn Plays a sport? Basket ball! How he/she would spend a rainy day: Probably at a friends house or at their usual hangouts. Spending habits: he spends very little money as he rarely has some, but he does shop lift often. Smokes: Yes Drinks: Oh yes Other drugs: Usually just weed, though he has tried a few other things once or twice. What does he/she do too much of? Getting in trouble, drinking and smoking What does he/she do too little of? Eating, sleeping, bathing, just generally taking care of himself. Extremely skilled at: Most physical activities Extremely unskilled at: Reading, writing, maths....  Nervous tics: Foot bouncing, pacing, lip biting Usual body posture: Looks relaxed, but shoulders tensed. Mannerisms: Talks with his hands a lot Peculiarities: He’s a basic bitch in secret, he likes the big ass, sugary, cllorful and extra frappes but he’ll get them in secret like they’re illegal. 

Traits

Optimist or pessimist? Pessimist, or realist as he would say. Introvert or extrovert?  Ambivert! He can go both ways, depends on situation. Daredevil or cautious? Daredevil!  Logical or emotional? A little bit of both, though most often ruled by emotion. Disorderly and messy or methodical and neat? More like Disorderly neat, he doesn’t have enough stuff to make a mess and though he doesn’t enjoy it, he’s often the one to do dishes and laundry at home. Prefers working or relaxing? He really likes relaxing, but if he’d like working if he got a job he enjoyed Confident or unsure of himself/herself? He’s faux confidence most of the time. Animal lover? Yes. Very, very much so. Especially dogs.

Self-perception

How he/she feels about himself/herself: he considers himself damaged, unworthy and incabable of love. One word the character would use to describe self: Survivor One paragraph description of how the character would describe self: Out loud he’d call himself “a badass free spirit”  What does the character consider his/her best personality trait? His ability to get up even when knocked down. What does the character consider his/her worst personality trait? His insecurity What does the character consider his/her best physical characteristic? He thinks he’s got a pretty nice bod, all things considered. What does the character consider his/her worst physical characteristic? His scarred hand, his big ears and his slight buck teeth. How does the character think others perceive him/her: As a bad boy, rebel, problem child and misfit. What would the character most like to change about himself/herself: Many things, though he really like to be taller 

Relationships with others

Opinion of other people in general: They just want something from him and they’ll leave once they’ve gotten what they wanted. Does the character hide his/her true opinions and emotions from others? Often until he trusts them, then he’ll start opening up. Person character most hates: Clive, his parents, Ghostface Best friend(s): Julie, Joey and Susie Love interest(s): Quentin Smith, but Steve is handsome too. Person character goes to for advice: Depending on what it is, Quentin or Susie Person character feels responsible for or takes care of: Susie is like a little sister to him Person character feels shy or awkward around: Jeff, it’s all very complicated Person character openly admires: Jeff, again, complicated Person character secretly admires: David. He’ll never say why. Most important person in character’s life before story starts: Nobody. After story starts: His Legion and, the light of his life, Quentin.

Snatched from here

[war-torn-and-collateral-damage]

I know I haven't updated in awhile, there had just been, alot going on.

So some updates,

1. Autism Spectrum disorder

As of January 30 of this year I officially had the evaluation and testing done and was diagnosed with Autism, I also have Sensory Processing Disorder (which was long suspected but not diagnosed till this eval) and also something called sensory interoception defecits, this is kind of like an 8th sense, it is what tells you "its hot, go into air conditioning" "im cold, put on a sweater" "im thirsty, take a drink" or "i have to pee, go to the bathroom". So that evaluation explained alot, we also learned that due to my head injury and my autism I have strong executive function defecits and delays, developmentally we learned that in the executive function department I am 10 years behind, so my executive function skills are that of an 18 year old and the more I age the more that developmemt slows down, So I will never catch up. We also learned that there are areas where developmentally, I am much more behind than 10 years, for example my emotion regulation appears to be what you would see in a 12 year old meaning I am delayed 16 years.

2. Ehlers Danlos Syndrome

Last Month we learned that I have a rare connective tissue disorder called Ehlers Danlos Syndrome, this causes hypermobility, elasticity in my joins, over stretchy and elastic muscles, ligaments etc accept that this doesnt just affect joints. There is connective tissue in your entire body. EDS is also strongly linked with a couple other things like Autonomic Dysfunctuon which I am now diagnosed with and POTS which I am getting tested for.

3. Autonomic Dysfunction/Dysautonomia

This can cause a plethora of issues as it is essentially a dysfunction of the nerves that regulate nonvoluntary body functions, such as heart rate, blood pressure, and sweating, bladder and bowels, digestion and alot more.

Unfortunately the bladder issues I have you are all very much aware of, it has been one of my most difficult symptoms to live with and manage and come to terms with. It still is not any better and my doctor is now saying a suprapubic catheter is probably inevitable we just arent there yet, this does however mean that eventually a tube will be placed in my bladder through my stomach and once that happens I will be peeing through a tube for the rest of my life.

Also. Having issues with eating and digestion. I have been for the last year, vomitting, chronic constipation, not tolerating food etc. Due to this we might be having to explore the idea of a feeding tube as well.

4. Speech

I have also recently began to have issues with my speech. It started after a seizure but it hasnt stopped. After a recent seizure I was unable to speak. Literally couldn't even move my mouth to form words. This happened while in an episode of paralysis which left me with no way to communicate at all. Eventually no speech turned to grunts and moans, then incomprehensible words, then slow slurred speech. It seemed to be getting better but it happened again today and hasnt come all the way back.

So there has been alot going on, I am waiting for a lot more tests, I did start doing Sensory therapy which I am hoping will help with my sensory overload episodes. Unfortunately we dont have enough answers about anything right now to know much, the one thing I do know and learned recently and terrifies me, is that typically these things gets worse with age. All these symptoms that come and go now will start to worsen, last longer and eventually wont go away. I don't know the extent or to what degree but this leaves me terrified that one day I will be stuck with no way to move or talk or tell people what I want or need, or have a conversation at all. So I have alot of emotions and feelings and thats why I havent been posting much, or talking much, but now you all know.

[angst-king]

Misery love Company pt 5

(mention of vomit, and ablelist behavior

It  had been a week and a half since Katsuki had eaten a proper meal, or felt normal. His entire body had felt like it was burning but that wasn’t because he had a fever, oh no he was cold to the bone but his bones were hurting so bad. Moving hurt so much, moving also made him incredibly dizzy to the point where he collapsed once or twice. These dizzy spells were accompanied by nausea, chest pain, his heart feeling like it would explode from his chest, feeling very hot and then suddenly he’d drop. 

Today had been the last straw or well tonight was the last straw. Katsuki was miserable, laying in his bed unable to be comfortable at all with how sick he was. A trash can next to the side of his bed in case he got sick but. Even just moving to get sick into the trash can made Katsuki feel very faint. Like now, Massaru was helping Katsuki who was busy getting sick into the trash can for what felt like the millionth time this week which made Massaru wanna take Katsuki to the ER but. Katsuki had been brainwashed by Mitsuki into the idea that he just needed to sleep it off but. This time Mitsuki wasn’t home and Massaru was too anxious to care especially when he heard Katsuki gasping for breath, clutching his chest, and whimpering to the point of tears running down his flushed red, and pale pink face. Massaru had to hold Katsuki up when the other’s eyes went back and he went limp, he knew the other had fainted again but this time he listened to his gut. He quickly grabbed everything he needed, and pulled Katsuki out of bed and into his car, and left for the emergency room.

When he got there he carried Katsuki in and allowed them to whisk his son away. Of course they had to ask the usual questions as well as some other ones but other than that Massaru was left in the waiting room. That lonely sickeningly white walled waiting room. Massaru knew he needed to call Mitsuki even if he didn’t want to know how his wife would most likely react though a piece of him hoped she would have a shred of selflessness to get off of work to come and see him.  

Ever since Katsuki’s condition began to make an appearance Mitsuki hadn’t been reacting to this well. She’d been rather dismissive about Katsuki’s complaints of pain, and rather passive aggressive with her replies. Then when Katsuki started getting sicker and sicker she wouldn’t even be bothered to help him. It was as if that was a job completely beneath her. Telling Katsuki to stop being weak or lazy and that he could do it himself.. The frequent fainting spells weren’t helping, making it even more difficult for Katsuki to try and help himself. It finally got to the point where Katsuki could hardly sit up without needing to immediately lay back down because he was gonna pass out.  Mitsuki ignored everything and passed it off as puberty, being a wimp, growing, needing to take care of himself. All her words were laced with a coldness that made Katsuki feel so weak.

Making the decision, Massaru called his wife and told her what had happened and, to put it frankly, her response wasn’t very empathetic or motherly. “Ugh what the hell! I told you not to Massaru!” “i-I know dear but come on, the kid fainted again and he hasn’t been keeping down almost anything but gatorade, and he’s in pain.” “Katsuki is just weak Massaru, he just wants attention and is playing it up to get it!” Massaru was getting fed up with his wife’s protests and replied in an annoyed tone.“Mitsuki, our son couldn’t even sit up on his own without blacking out. I don’t care if you think he’s faking, if you truly loved and cared then you’d come over here.” He hung up before she could reply as he didn’t want to hear another word from her at the moment. Still alone in this waiting room, waiting for any information on his son’s condition was making the man anxious. It felt like hours, upon hours, but it had only been one hour but. Time in here seemed to feel like forever, it went by so slowly yet too quick at the same time.

Finally, a doctor walked over to him smiling. “Mr Bakugou?” Looking up he sees the woman coming over to him and he gives a sigh. “Yes?” He says as he stands up, the woman approaches him and starts. “We’ve got your son Katsuki, stabilized the best we could here. We did some testing after learning his symptoms and well, the results aren’t great…” The way the woman spoke, Massaru had a bad feeling from the start, but said nothing allowing the woman to go on. “Mr Massaru, let's sit.” She says, now he’s feeling more and more anxious about the possible news. Nodding he sits down in the chair he started in while she sat beside him turning to face him. “Your son could’ve died tonight if you didn’t bring him. He was that sick.” That made Massaru want to be sick himself, the feeling that if he waited a day or two longer, Katsuki could’ve died. Still Massaru didn’t know how the boy could’ve gotten so bad or what was wrong with him, so he asked. “Wh-what’s wrong with Katsuki?” His voice wasn’t very strong, it was strained with concern and fear. “Well your son is sick, and I don’t mean that he has the flu, he’s chronically ill.” It hadn’t hit him completely but hearing that his son was chronically hit him but. How could his son just suddenly fall ill like this though? Even with a chronic illness, shouldn’t this have appeared when he was younger? So he asked what he was thinking “shouldn’t this appear when he was younger?”  “Well some things probably did but they never manifested like this or he did and the doctors just dismissed it as something else.” Massaru couldn’t help but feel guilty, his son could’ve been suffering for years and this is how he finds out. Twiddling his thumbs unconsciously and asking “So what does he have?”

“Katsuki has H.E.D.S which is called Hypermobility Ehlers Danlos syndrome. This is a connective tissue disorder that allows your son to be very flexible and have very elastic yet very thin skin. Due to him being very flexible and having lots of collagen his joints are very loose which means he can easily dislocate things and have horrible body pain from it.” Taking this information Massaru had more questions. “How could this condition almost kill Katsuki? Or is there more to this than just horrible body pain?” “Well I’m glad you’re asking these questions because, yes there is more to this disorder. How I explain this is I call this the H.E.D.S expansion back because this disorder has the possibility to contain multiple other disorders and problems and. For Katsuki those other disorders seem to be POTS and Gastroparesis. Though gastroparesis is a theory I’m not totally solid on that one but it's a good possibility that he has it.” This was so much information coming at him at once but he wanted to know how these conditions would have ended Katsuki’s life. So Massaru asked for the doctor to explain the second ailment. “POTS stands for postural orthostatic tachycardia syndrome. Which is a heart condition in which standing or sitting up can cause the blood flow to pool away from Katsuki’s head and make him faint. It can also cause lightheaded-ness, chest pain, shortness of breath, anxiety, fast heart rate, tremors, nausea and vomiting. These symptoms can become very exaggerated during a flare up, which explains why his heart rate was so high but his blood pressure was low.” Massaru silently let everything sink in until he asked1

“so your theory about Gastroparesis? What is that exactly and why do you have a theory for this?” “Well Gastroparesis is a fancy word for stomach paralysis. It's when the nerve that controls the stomach’s contractions that move food from your stomach to your small intestine has stopped functioning or maybe the sphincter of his stomach to his small intestine won't open properly. So his body is digesting things way too slow which can cause lots of pain, bloating, nausea, the feeling of being constantly full or not hungry. SInce his body isn’t digesting his food correctly that means that he’s not absorbing any nutrients through what he eats by mouth….so if he does have gastroparesis they may have to find another way to provide him nutrition.” All of this was a lot for Massaru to grasp but he could also do his research but. Then he had another question. “So how are you guys going to treat my son, what are the plans?” “Well Mr Bakugou, I suggest that your son be transferred to a long stay facility because his condition is not good and we can’t do what a pediatric long stay hospital can do.”

That’s when he knew Katsuki’s world had officially turned upside down. Massaru couldn’t help but feel terrible. If he had waited any longer, if he’d listened to his wife, they may not have woken up the next morning to see Katsuki with a pulse. If he hadn’t listened to his own instincts Massaru would have never forgiven himself. Now his son was gonna have to be transferred to a long stay hospital and he knew Katsuki wasn’t gonna take this well at all. Still he wanted to see Katsuki and knew this information would be accepted better than it would coming from him than the doctor. “We can admit him, but can I see my son please?” “Sure, he should be waking up. He did faint on us when we had to get blood drawn and hooked him up to some IVs. Your son definitely has anxiety around needles, I can tell you that for sure.” She chuckles a little while standing up from her seat, Massaru follows suit and is led down the hallways to find Katsuki.

[brittlebutch]

any tips when an appointment goes like shit? ive been having chronic pain for years, worst in my hips, with joint popping and hypermobility, bad enough that i was having trouble walking and used a cane and could barely get out of bed... but just saw a rheumatologist and all labs were fine, all xrays were normal, she doesn't think anything is wrong and i just need to exercise more, joints popping is probably nothing. im just so lost as to what to do now. i hate living like this

i always feel like the worst person to answer questions like these just because my usual ‘coping’ method for this shit is just like.. fucking. suffer through it lmao; but it really do want to give you like a Good Answer because BRO this shit sucks so fucking much it’s unreal. even tho i’ve actually got like a tentative dx now i Still have the same chucklefuck experiences at the doctors’ offices (and only Partly due to the fact that my dx exp was basically ‘hm you’ve been looking for an answer for the past 8 years and haven’t had any luck? could just be These Things; let’s not bother doing any more tests to try and confirm, try these meds [that don’t work] and we’ll see you in a few months! don’t call me, we’ll call you haha!!”)

So, like, first off I’m gonna say that you should absolutely let yourself be angry and frustrated. IDK how much of a ‘universal’ experience this is, but for me, appointments like this usually send me into a doubt spiral; like “What if this IS just normal body stuff everyone deals with and i’m just a pussy who can’t handle it? after all, they’re A Doctor, right? so they’d know???” but they Don’t always know. Yeah they’re a doctor with a theoretically good education, but they’re still people with biases and also a sometimes lazy inclination. YOU know your body and your experiences Are real and do matter. Let yourself be angry at your doctors, and tell anyone who tries to give you the whole like “doctors are Incredible people you can’t ever talk shit about” spiel to fuck off lol

Next i think it can be important to remember that you don’t like, Need a doctor’s permission to do certain things? Again, might just be a Me Thing, but I put off using mobility aids for years just because doctor’s told me my bones were fine and whatever, and the few times I asked about them specifically, got told to not use them because they’re just [insert any number of allusions to laziness]. Finally went ahead and just bought myself a cane last december and dude, Great purchase. I’ve even recently got smart crutches; because the cane was kind of hell on my whole hand and arm joints (again, this was something i asked a doctor about and was refused an actual answer for lmao), which i don’t quite regret even tho the ‘rest’ working from home during quarantine has granted me means my joints are feeling better than they have in literal years. You’ve already mentioned that you use a cane, so maybe this won’t necessarily apply to you, but like, for me i spent a really long time focused on the idea of getting a DX because in my head, that basically just meant getting permission to have a body; in the sense that like, yeah a dx can maybe get you treatment/more specific coping methods, but for me it also gave me Permission to feel bad (especially where other people could see/know about) which we Don’t Need! you are allowed to validate your own pain and experiences, basically, no one else needs to do that to make it ‘real’

This might be the only semi-helpful point in this post lmfao, but also think about like, why you’re going to doctor’s and whether it’s worth continuing. I started like, back in my sophomore year of HS, and then went On and Off trying new doctors for a while; this shit is exhausting; even once i was on my own and didn’t need my parent’s approval/help in getting to doctors, i still put a lot of stuff off because i didn’t have the energy for it. and that’s okay! but if you do really want to keep pushing, then make sure you keep pushing (which, admittedly, is something i still have trouble putting into practice lol). it’s always been like, dummy easy for me to feel somehow guilty for ‘inconveniencing’ doctors by showing up with problems and shit, but you really have to remember that you are Paying Them to provide you with a service. as long as you’re not unreasonably treating someone like shit, you have every right to push and argue and disagree with them. And if things with your current doctor aren’t working out, find a new one. you don’t need to stick with someone who isn’t working to help you or who you don’t feel comfortable with!

also wrt the whole ‘exercise’ schlock dude, fuck taking that at face value. i’m sure that more exercise really Does help some people, but if you’re in so much pain that getting out of bed and walking around is nearly impossible then tell them so, and then tell them to fuck off. i’ve had doctor’s giving me that spiel for nearly a decade, every one of them lovingly disregarding the fact that i Was exercising at the times (be it through swim teams, gym classes, the fact that most of my commutes are entirely walking, etc), and even my most recent one hearing me say that I was pretty sure the quarantines meaning that i was walking less to get to classes and shit was literally Decimating my pain levels and then still telling me to make sure I try walking around/exercising more. i can’t help but feel that like 9/10 that advice is complete horse shit lmao. same with diet recommendations

i hope literally ANY of this is helpful, lol. if it isn’t, then at the Very least i can offer you an open invitation to come vent in my inbox lmao, because i Get how shitty this is and the fact that like ‘healthy’ people tend to have the “no answer is a good answer! :)“ mentality can wear on u just as much as the actual appointments, so feel free to complain as much as your heart desires dude!

[coffee-bat]

you know how i once mentioned my knees having "random malfunctions" due to marfan, and how i have no idea why and how it happens (what actually causes pain), but that i have a very specific impression when it happens, but consider it improbable and never shared with anyone

yeah i just found out recently and i'm fuckng

i was walking along with mom in the mountains, and as i was currently very much thinking about my fucking knees (we were walking downward, and the path was covered in rocks, so i was pretty concerned), i decided to give it a try and ask if maybe she knows (which i, suprisingly, never did).

so i'm like, "i was wondering if you maybe knew what actually happens when my knees malfunction"

she's like, "and what do you think? what does it feel like?"

"uh, the feeling is pretty specific, and definately not what's actually happening- but it feels like something shifted, and there's no gel padding on the side/front, so my weight is resting bone-to-bone when i stand?? again, ridiculous and probably impossible, but that's what it feels like"

"yeah that's actually exactly what's happening there"

"wait what"

"this is exactly what knee hypermobility results in. your kneecap can shift at random times, and rest directly on the bone"

"oh"

so like

oh my god

it's at the same time scary and good to know what's happening there, and it's weird to know that yeah my ridiculous hypothesis that i considered absolutely impossible because there's NO WAY my knees are that fucked, is actually correct, and my knees ARE that fucked up.

it's. weird. but i am happy to know what the fuck is going on (and totally not much more squemish about it now that i know)

anyway, sorry for the ramble, i just. wanted to share.

[allofthesugar-blog]

A lesson in self-control

A few days ago I went to see a specialist doctor (specifically a rheumatologist) about some pain I’ve had difficulties managing. I have Ehlers-Danlos syndrome (EDS) and Joint hypermobility, with this is an increased likelihood of costochondritis and slipping ribs. Because of the placement of these issues, it can be difficult to decide on treatment methods. The specialist doctor discussed with me the troubles I have been having and requested to do a check-up to ensure that there weren't any underlying problems apparent (I have had check-ups in the past but he probably needed to do his own). Although I did find it slightly strange when I was lead to another room and asked to change into a gown... Just to be clear: to decide how to help with my slipping ribs I was asked to take off my upper clothes (understandable) and trousers. As is usual another person needed to present as I had to remove my clothes. Usually when I have to remove my clothes or change into a gown a curtain is drawn across so I could have some semblance of privacy. Instead, the nurse that was observing drew the curtain across and stood on the same side as me while I tried to change.  Once the doctor arrived he did the average check-up tests for checking heart rate and breathing etc along with checking pain and nerve reactions but proceeded to do one of the hypermobility tests used to measure how far/if the knees hyper-extend (this is one of the tests I can no longer do due to seizing and increased pain in the region). After this, I was allowed to get dressed again (in private this time). The doctor then told me that I definitely have hypermobility (which I already knew and had this confirmed from many doctors and many physiotherapists) but didn’t have the symptoms of EDS (he didn’t ask about my EDS symptoms and I  have had several confirmations of this diagnosis from other rheumatologists too). He then asked what I think should be done about my pain. I hate this question for several reasons, the key one being that if I knew what should be done I would have either done it or asked for it. He then discussed EDS and hypermobility a bit and I’m pretty sure he has no idea what EDS is or is confusing it for something else.  He told me that he wanted to run a routine blood check and such citing that he wanted to check certain vitamin levels to see if that was the cause of the pain... even though I know it’s costo and slipping ribs.  He then suggested I take vitamin D again even though my vitamin D levels have been normal for a few years now just because ‘you’re a student and probably don’t come out during the day’ (it was a 9am appointment and I was early) and added some extra tests that I had done only 2 months prior to these for no reason I can tell. His key suggestion for dealing with the pain was to buy a book on mindfulness.  So next time my rib slips and I’m in so much pain it’s causing further illness I should try meditating. Who’s gonna need to ever have to have their ribs where they should be with this incredible solution?! Screw my medications I’m just going to start imagining myself into wellness. While I’m at it I’ll imagine that I have money and a doctor that is actually helpful

[karalianne]

Hypermobility

I am definitely hypermobile. My Beighton Score is a 4 or a 5 (both pinkies, both elbows, possibly right thumb but depends); and I meet the Brighton Criteria with one Major Criterion (my Beighton Score) and two Minor Criteria (myopia--nearsightedness--and pain for more than 3 months in 1-4 joints).

So let me break this all down for you. What follows is a list of all of the things that I deal with that are probably due to being hypermobile.

I’m double-jointed. Not in a really bendy, contortionist kind of way, but I can lock my fingers and my baby toes and my jaw (left side). My right ring finger locks when I play my clarinet. It doesn’t hurt and doesn’t affect my ability to play, but it freaks out other clarinetists.

I have poor body awareness (as in, I’m not always sure where my body is in space).

I bruise easily and rarely recall where the bruises came from.

I have poor core strength. I sit on a leg (preferably my left) as much as possible and when I was a kid I would regularly sit in lotus position (and walk on my knees for kicks... man, I miss doing that now, I should try it again). I like to sit cross-legged (criss-cross applesauce or lotus sometimes) in office chairs and dislike it when the arm rests are too low to fit my legs under for the pose.

My hand gets sore in my palm (base of thumb) and on the back (ligaments and joints for ring finger and pinky) when I write for a long time; hot water relieves the pain and loosens me back up. [When I was in a long psych class as a student in 2001, I would leave after about an hour to go to the bathroom across the hall and hold my hand under hot water to loosen it up so I could continue to take notes for the rest of the class. Pretty sure that’s actually not normal.]

I overpronate and have flat feet as a result (but would have high arches if they weren’t collapsed).

I have had plantar fasciitis in both feet now; the first time I had it on the left and got physio and it helped somewhat, the second time it was on the right and I did nothing for like two years, then got physio and never did the exercises and it just went away on its own somehow.

I used to sprain my ankles regularly. Once I fell off a sidewalk onto the grass (I didn’t actually fall over, I just missed the sidewalk and landed funny). I didn’t realize how bad it was because turning my ankles was so common, and it took me a month to realize I should probably go to the doctor and get physio for it.

I popped the cuboid bone out of my foot in 2007 when I tripped coming out of a tent, and it hurt about as much as a sprained ankle. My physiotherapist at the time was surprised because her husband was in tears when it happened to him.

I think I’m getting arthritis in my index finger (knuckle) on my right (mouse) hand.

I have tendinitis in both arms.

One of my physiotherapists said I have pinched nerves throughout my upper torso; I kind of wonder if all of that is due to hypermobility.

Since I was in my late teens, I have had knee pain and hip pain that has never been treated properly. They said I had patellofemoral syndrome in my knees. I think the hip pain has mostly been my IT band. Sometimes this dull ache extends into my ankle. They said orthotics would help with the knee pain; they didn’t, and they were hard to get into shoes given my feet are already a weird width and hard to fit (I need a deep toe box and have a narrow ankle, plus I’m a C width so wide shoes are technically too wide since they’re D width).

That’s a lot of stuff I deal with that is all likely related to being hypermobile.

Like, I totally get why I was never diagnosed with hypermobility before, because it’s a specialty type thing and I have never actually described all of this stuff for a physiotherapist before. Unlike some of my other health things, I’m not upset about this.

But I would very much like to get properly assessed and diagnosed and then maybe get some help with some of these things from a physiotherapist who actually knows about hypermobility, because I would not be at all surprised if some of my previous physiotherapy actually hurt me even though it seemed to be helping at the time.

[miniar]

Here’s my situation. (aka, Miniar’s always broke)

First up, who/what am I?

I am a 35 year old from Iceland.  I’m disabled, both physically (fibromyalgia and hypermobility) and mentally ill (chronic depression, anxiety, and ADD). All of my conditions are currently going untreated as I can not afford treatment. I’m queer; Transgender, pansexual, as well as polyamorous and kinky.  I’m also a parent to a teenage daughter. (Her wellbeing and happiness being my first priority in all things.)

Iceland has disability payments which I qualify for but it isn’t enough to cover the basic cost of living.  Iceland has single payer insurance, but that doesn’t mean that my access to healthcare is free or easy to reach. 

Iceland is one of the most expensive countries in the world to live in.  I try my best to make good choices and if I am careful, lucky and don’t spend a single coin on anything else, my disability can barely cover rent and enough food so that my daughter is fed. 

But this isn’t the only things that need paying for.  All the little things that make the difference between “barely surviving” and “living” aren’t free. 

I do have the help of some loved ones, but it’s not always enough, and the constant strain contributes heavily to the worsening of my various symptoms. 

Hence this post, which I will update/redo as my situation evolves. 

Things I can’t afford but need to tend to: 

- My daughter starts school tomorrow (friday august 18th 2017) She needs schoolbooks and other school supplies. sorted, more or less

- My daughter needs new glasses. 

- My daughter could use more sweaters and other clothing.

- One of the dogs probably needs to have his anal glands removed.  (This requires a trip to Rvk with a dog that hates car rides and where I don’t have a place to crash that allows dogs... )

- I need to either repair my Bosch Athlet vacuum handle or replace it. Repairs primarily require a very specific screwdriver that I haven’t been able to find and a little bit of luck once I get inside the handle. Perfectly doable I think. 

- We need new winter tires.

- I need new glasses. 

- I need to replace my dryer. This is getting worse! And before someone suggests I just line-dry, this isn’t an option.  I have one of these little indoor drying stand where I placed one shirt that wasn’t dryer safe, in the sun, and it took well over a day for it to dry.  With winter coming, balcony drying is not gonna happen at all. Frozen pants are not an option!

- New Addition! A new malfunction light came on in the car.... Fuck. 

__

These are the things I “know” right now that I need to tend to, and this is subject to change.  All my bills, including rent, are due the first of the month, and the next payday/paydate, september first, I’m not sure I can cover all my bills.  I don’t have any money at all right now. 

I try to be smart and not spend anything on anything unnecessary, but I do have poor impulse control and sometimes I slip up, mainly by deciding to, in the cheapest way possible, participate in something that costs money and is fun.  Mainly by deciding to live a little.  Usually, when I do this, something goes wrong.  Like right now, with the dryer. I went to pride, I spent a little bit of money on something happy, I came home, I did laundry, and the dryer isn’t drying things as well as it used to.  It was a cheap, used, piece of equipment and will likely be replaced with another cheap, used, piece of equipment, and I have made repairs on it myself once before, but now it’s not worth repairing again.  ___

Ok, enough bitching and moaning.  TLDR: Miniar is a struggling cripple with expenses that he can’t afford because fuck him that’s why!

I do however know my situation is nowhere near as dire as it is for a lot of people and I am already getting some help, and so I struggle to ask for more help, but honestly, I kinda need it. 

So, if you wanna help out, here’s how you can. 

I have a ko-fi. A couple dollars there always counts. 

I have an Etsy for my crochet, which is awesome btw, and any sharing of any thing from there is awesome. 

I have a side blog @theblindneedle for my crochet too, following that and reblogging/boosting the stuff I make and put there also helps. 

And, maybe, pass this on?

Thank you. 

[cookinguptales]

Okay so weird question, but how exactly did you get diagnosed with POTS? I was diagnosed with hypermobility syndrome and partial arrhythmia a while ago, and it's only just recently that I've had a doc wonder if I have POTS. He didn't really tell me anything about POTS, and now I'm really lost! Do you think it's unlikely that I could get to be 21 and not be diagnosed?

Strap in, friend, because the story of how I got diagnosed is long and unpleasant.

So to start off, here’s a basic explanation of Postural Orthostatic Tachycardia Syndrome. It’s a syndrome, which means that it is a description of a collection of symptoms rather than an underlying cause. Frankly, doctors aren’t super sure why any of this happens, what exactly causes it, or even if it’s genetic or what. (But my mom, sister, and grandmother all show signs of mild POTS, so uh. It’s probably genetic.) The long and short of it, though, is that your blood vessels are supposed to automatically tighten or release in order to control blood flow. When you stand up, they tighten to counteract gravity and make sure blood stays where it should be. When you have POTS, your blood vessels don’t do what they’re supposed to do. Your autonomic nervous system stops controlling this tightening and loosening process, which means your blood flow is not being adequately controlled. (Also, there seems to be some research showing that #1, we tend to have more elastic blood vessels, which means they just expand when they fill up more – bad because that means your body can’t use blood pressure to regulate blood flow, either, and #2, we may not always have enough blood in our bodies to fill our blood vessels, so again, shitty blood pressure.) ANYWAY, what all this means in practice is that assorted parts of your body aren’t getting enough blood, or they’re getting too much blood. Blood does all sorts of important things for your organs, especially oxygenating them, so this really means that POTS is an “anything that can go wrong will go wrong” situation. Anything in your body that uses blood can go haywire at any time. And sorry to say, that’s everything.

Now, POTS is highly variable. Again, it’s a loose collection of symptoms, and those symptoms are different for literally every patient. POTS is actually super common in teenage girls, but it tends to be very mild and some teens (mostly boys, mind) completely grow out of it, so people often don’t even notice they have it. People only just started researching it and it’s still not talked about much, which, well, is probably due to sexism. I learned the hard way that teenage girls are not generally listened to when they complain about nebulous symptoms, especially if those symptoms have literally anything to do with hormones and menstruation. (Which POTS does. It’s…I think ¾ of all people who have it are biologically female, and onset usually accompanies periods of hormone fluctuation such as start of menstruation, childbirth, or start of menopause. Most sufferers get it in their teens when they start getting their period.) Like… It’s hard to really put this in a gender neutral way because I promise you, the reason doctors are shitty about POTS is tied to both the biological and societal effects of being female. That’s an aside though.

Anyway, tl;dr, it’s different for everyone and doctors think you’re nuts. When I was diagnosed, in the informational packet literally said “THIS IS NOT ALL IN YOUR HEAD” because so many patients have been repeatedly told that. For me, I was actually uh. I don’t want to say lucky? But in some ways I guess, yeah, lucky. I have a really bad case of POTS with some really severe symptoms. I have a lot of digestion problems, extreme exhaustion problems, dizziness, faintness, anxiety/depression, pooling/tingling/coldness in extremities, and here’s the biggie – blindness. When I stand up, I often just straight-up go blind. (Or if I’m just sitting there doing fucking nothing if I’m on an airplane.) It was really bad especially when I was a teenager. It used to be like literally every fucking time I stood up. (We later found out it was because all the blood was draining out of my head bc gravity. Turns out your brain likes blood! This is also why it hurts so much.) Now, doctors ignored most of what I told them about exhaustion, trouble keeping down food, aches and pains, etc. I was repeatedly told “oh, well, that’s just part of being a teenage girl”. Like honestly, try telling someone that you have exhaustion, pain, and nausea relating to a period and see how seriously you get taken. Jesus.

BUT UH THEY COULD NOT IGNORE THE BLINDNESS. Like I don’t care how teenage girl-y you are, it is not normal to go blind on the regular! My doctors could not figure out what the hell was happening. And I do mean doctors. I got POTS when I was around 10, along with my period. I was diagnosed when I was almost 18. In the meantime, I was passed around between dozens of doctors and honestly? I was a guinea pig. They didn’t know what was wrong with me so I was subjected to constant barrage of tests and treatments that made me a hell of a lot sicker. I was going to like 3 different doctors a week, sometimes every day. There are very few medical tests I have not had at least once. Some of the treatments they tried, I later learned, carried a strong risk of addiction, permanent neurological damage, and death. I was a drugged-out mess trying to drag myself through 15 flavors of physical therapy every day. Like uh. In short, my teenage years weren’t…good… 

I finally got referred to like my sixth neurologist, and the guy was like “okay, you have been passed around between neurologists, cardiologists, ENTs, sleep disorder specialists, etc. for YEARS and we don’t know what’s wrong, so it makes no sense to keep ‘treating’ you – so I’m gonna take some readings and send them (and you) to a research hospital”. And that’s what he did! He took me off all of my medications (leading to the kind of DTs that honestly possibly could have killed me; I researched a few of the medications later and let’s just say you’re not supposed to go off them cold turkey) and did some tests. He found out some stuff like my blood pressure moves around a lot when I stand up. And sometimes my blood pressure was as low as 60/40. (Yo, that’s almost dead. The nurse took the reading three times with two different machines bc she was freaking out, lmao.) So he referred me to Mayo Clinic.

Now, what I did not know before this was that Mayo was actually the clinic that had discovered (and still researched) POTS! They saw a lot of girls like me. They took some blood, did a few tests, and when I had my appointment with them, they knew in under a half hour that I had POTS. I…cried. A lot. haha. It was so bizarre how many things in my life were actually an indicator of POTS. They were like “do you often sit all folded up?” and I basically exclusively do – and often got in trouble for it in school – and they were like “yeah, that’s POTS, you unconsciously try to keep all your limbs tucked in to reduce how far your blood needs to go”. Which is, I guess, why I tend to lose sensation in my legs and/or have my feet turn purple when I sit in normal chairs. lol. “Do you ever get dizzy or black out when you stretch or yawn?” oh yeah. “Do you get really sick when you take hot showers?” almost died once or twice, check! “Do you get weak when you lift things above your head?” you betcha. “Do you have a lot of problems with heat and sunlight?” OH YES I DO. Living in Florida was hell. I’d be vomiting and unable to stand up after like 30 minutes outside in the summer. I still vomit and get migraines if I look at a sunset, when the sun is strongest. Sensory sensitivity, especially photosensitivity, is a thing with POTS.

The actual diagnosis of POTS is kind of difficult. They usually have to do a ton of tests to rule everything else out first. Then they’ll usually try a tilt-table test (they tilt ya and measure your heart rate to see if your heartbeat skyrockets to help battle your blood doing weird shit) or a sweat test (which I am told is supposed to be painless but was one of the most painful experiences of my life so maybe it was a POTS thing) or look at your pee and see if you’re hella dehydrated. If you have POTS, you’re pretty much always hella dehydrated. (Gross but important: a symptom I never mentioned bc I didn’t know how abnormal it was – it burned like HELL when I peed. Turns out I was grossly, dangerously dehydrated. My urine was so concentrated that it was literally burning my urethra. idk how this slipped by so many doctors, but drink some dang water!) So it’s really a combination of tests for diagnosis, and they have to know to look for it in the first place! More and more doctors know about POTS now, but when I was first diagnosed almost a decade ago (this February! :’) when I went to college none of the school doctors knew about it. My family doctor didn’t know. None of my specialists knew about it. They wouldn’t give me student vaccinations bc they didn’t know how they’d interact with my brain. lol. It’s better now, though! I recently got a new doctor when I left my school’s health system, and she knew what POTS was! I was so happy, haha. Once I had a doctor literally google it right in front of me, so it was uh. A welcome change.

All this is to say that getting POTS diagnosed can be hell!! And I could definitely buy that you’re 21 and haven’t yet been diagnosed, especially if you’re female. My recommendation is this: the main treatment for POTS is diet and exercise, and that can’t hurt even if you don’t have POTS. I shit you not. There’s no cure or anything, but you are supposed to drink A LOT of water (I drink over a gallon a day, and that’s on days I’m not dealing with the sun) and eat a LOT of salt (”as much as you can stand” was their exact wording) and wear compression clothing (spanx and compression socks help me) and try to keep your body as toned as possible. It’s really easy to get out of shape when you have POTS (god knows I did), but they recommend trying to keep your blood moving. (THOUGH, CAVEAT!! I put on a lot of weight since I got diagnosed, and I have to admit. It’s gotten my blood pressure to a healthier level. So idrk what to make of that.)

I’m not gonna tell you to start eating massive amounts of salt when I don’t know your body, but drinking water can’t hurt you. So if you suspect that you may have POTS, start drinking water. This is not a replacement for a treatment plan, but it can’t hurt you! It can only help! So while you’re working with your doctor, just drink a lot of water and see if it helps you feel better. It is like night and fucking day with me.

Finally, POTS has a high comorbidity rate with other issues. In other words, if you have a severe case of POTS, you probably don’t only have POTS. A common illness to have with POTS is EDS, or Ehlers-Danlos Syndrome. It’s a type of hypermobility, which may be why your doctor is concerned. (I don’t have EDS, probably, but I do have some pain/movement issues that they’ve never been able to pin down, so there’s probably…something. idk.)

Here’s my advice. Work with your doctor to try and figure things out. Drink water. Make sure you have a good doctor whom you trust. Even after I got diagnosed, I regularly got medical professionals who believed this shit was all in my head. And try not to worry. Like I said, for most people who have it, POTS is extremely mild. If you change your lifestyle, you might not see many symptoms at all, and if you do, well. Work with that trusted doctor. Hit me up. I know a lot of ways to get a lot of salt in your body. lol