#each day i realize more and more how much my hypermobility hurts me

[candiedmemories]

I wish I had learned more simple recipes as a child/teen. My dad only fed us spaghetti, frozen (baked in oven) chicken nuggets and fries, or hamburger helper on the nights he decided to make dinner (other nights were fast food or "You're on your own" (aka snacks or nothing). Sometimes (once or twice a month) we'd have something special like burgers or chicken/turkey/pork baked in the oven, but it was rare.

I just made egg drop soup for the first time and it was so easy?? The longest step was boiling the water to dissolve the chicken bouillon cube! It tastes so fucking good and took me probably 5, 7 minutes max.

I'm regularly so overwhelmed by the thought of cooking that I rely mainly on boxed mac n cheese, ramen, microwave meals, and fast food. I recently realized it's partially because I get quickly fatigued standing at the stove/moving in the kitchen, and so I've started "meal prepping" shit tons of soups and meals. I also am sometimes so mentally drained that I don't have the ability to make myself begin cooking.

Now, I'll bake a batch of chocolate chocolate-chip muffins (doing the mixing while sitting down is a FUCKING GAME CHANGER haha), freeze them, and then have breakfast a 30 second microwave away every morning for 10-12 days.

For my six meal-prepped chicken soups: I boiled chicken tenderloins and bought pre-chopped onions and bell peppers, leaving the only actual prep to chopping the celery and shredding the chicken. I tossed all of that shit in portioned bags and dumped in my seasonings, so now any time I want chicken soup I just have to boil water, add chicken bouillon, lemon juice, and olive oil, dump in the prepped bag, and I have soup in like 5 to 10 minutes (with little to no standing).

I made a huge batch of rice and gravy in January which ended up making probably 10-12 individual portions that I froze and have been eating every once in a while since. This takes the most energy (a lot of initial prep that I now could probably make more accessible, and when I reheat it I have to cook rice alongside it) but is still something.

All of these things could have (and should have) been taught to me before I was sent off on my own. Forever I've thought cooking is this draining task (often if I manage to cook something from scratch I'll be exceedingly tired for the rest of the day) and tbh it still often feels draining, but knowing now that I can literally make my own frozen meals I feel like life is getting a tiny bit easier.

[heraldofzaun]

Childhood

Viktor Grigoryevich Pahlen is four years old when his father pulls him aside one evening. He will be starting school, soon - it is the summer, all low-hanging smog and trapped heat, and fall is coming sooner rather than later.

“Viktor,” Grigoriy says softly, looking at how his son is curled up on the chair opposite to him, “Viktor, look at me.”

Viktor’s face pops into view, no longer smushed against his shoulder in a position that both Grigoriy and Yekaterina find profoundly uncomfortable to look at. His hair sticks up at many angles: a testament to his tendency to squirm whenever Yekaterina tries to make him presentable. He’s pouting - but he is looking at Grigoriy. That’s progress.

“Your mother and I wanted to talk to you, before you start school in a few months,” and then it had been simply his job, but he is more well-suited to this than her, “about you.”

“But I’m me.”

“You are, yes, but…” and where to begin, “when you go with your mother to the store, or out in public, do you see that people are different than you?”

“Mh-hm. They’re bigger, because they’re adults.”

No. That’s not… it’s irrational, yes, but Grigoriy often wishes Viktor would simply grow up faster. He can explain surgeries while his gloves are deep within another living, breathing person but not genetic mutations to his own son because the language isn’t there. He has to repackage the medical journals and studies he’s read since the day Viktor was born into something that a child who has barely learned to write his letters correctly can understand.

Grigoriy tries again. “What about your hand, Viktor? Isn’t that different?”

Viktor shifts and stares at his left hand, all four pudgy fingers of it. If he were older, Grigoriy would explain that he is missing the fifth metacarpal and its associated phalanges… medical terms are so clear in a way this is not. But his son is young, and his words have to match.

“I guess,” and Viktor’s curled back in on himself again, voice muffled. “But I saw a man on the train who had no hand!”

“He probably lost it in an accident,” damn, that tone’s too sharp. “I mean to say… you’ve always had it.”

“Mh-hm!”

“And you know how your hair is different than others’, too.”

“Mom says that it’s thicker than the Kumungu.”

“…I’m sure she does,” probably while trying to corral Viktor into letting a brush so much as touch his head, much less a set of scissors. “But I meant the white streak. The white part.”

“Oh. But people have pink hair, I saw a woman-“

Grigoriy sighs. “It’s not natural, Viktor. Not like yours. And… you know how you sometimes get sick, yes?”

His son is practically a ball now, with his head tucked somewhere between his chest and knees. Do other children of this era do that? His coworkers have children in the workforce, now, and so the time to ask his peers is long-gone. Perhaps there are medical journals he can request, although the gods only know what keywords he could use.

“I don’t like that.”

“Neither do your mother and I. But it’s all the same, your hand and your hair and your stomach.”

“No it’s not.”

“Yes, it is.”

“Nuh-uh.”

“It is all from the same source, Viktor!” and that is the sound of Yekaterina dropping a pan into the sink - he shouldn’t have raised his voice. “It’s fine, dear,” Grigoriy calls to the other room.

Viktor has pulled himself out of the ball enough to focus his gaze on his father’s knee, or perhaps the hand resting on it. “…Sorry I made you mad.”

Oh… “It’s not you, Viktor. I’m…” just tired, just old, just out of my depth, “fine now. What I meant to say is that all of those are caused by the same thing. There’s…”

He has to explain genetics to a five-year-old, doesn’t he. That’s how this conversation ends. Maybe…

“I’ll be back.”

                                                        ---

Yekaterina is still in the kitchen, putting the last of the night’s dishes on the drying rack. She’s tired, too - the hours Grigoriy spends at the hospital, in surgeries and consults and teaching, she spends with Viktor and her work. Her research laboratory wants her back soon. They’d been generous with letting her have time off after Viktor’s birth, and then let her work from home as he aged… but he’ll be enrolled in school soon enough and then she can return to the lab for six hours on every weekday.

The two of them had mutually decided that her work would be the one to take a back-seat to Viktor, although Grigoriy sometimes wonders if raising a child would be less stressful than his long hours. Probably not.

“Did you explain it to him?” she asks quietly, drying off her hands.

“…I’m trying. I thought some diagrams could help.”

That gets a small laugh from her. “Maybe they will. I can tell you realized you can’t just treat him like one of the visiting students. You can’t yell at him, for one.”

She probably didn’t intend for her comment to hurt. “He kept talking about the kinds of people he sees when you take him out. Drawing the wrong comparisons.”

“He’s five, dear, what else is he supposed to do? It’s our job to make sure he makes the right ones.”

Another heavy sigh, and he presses a kiss to her cheek. “You’re right. It’s just been a long day.”

“I tend to be,” and she kisses him in return, “now go get those diagrams.”

                                                         ---

Grigoriy returns to the living room, holding a textbook as if it’s the key to immortality. It’s one from his undergraduate years, so it’s probably incredibly outdated in more than a few aspects - but he just wants it for the illustrations. He sits down across from Viktor, who’s currently splayed out in his chair like a ragdoll. Grigoriy notes the hypermobility of his son’s shoulders and elbows. That, too, is most likely tied to this topic of discussion.

“Viktor?” he asks, flipping through the book in search of the right page. “Can you come over here?”

Viktor rolls off of the chair with a thud but bounces to his feet only a moment after. He peers at the book with great interest. “What’s that?”

“It’s…” Grigoriy inhales, willing the words into place. “Your body is made up of a lot of little things called cells. They make up your skin, your hair, your brain… they make up you! In each-”

“But I’m me!” Viktor sounds indignant, as if the concept of cells is an affront to him.

“Ah… think of it like how… your arm is your arm, but it’s not all of you. You are more than just what makes you up. So, in-”

“Oh, okay.”

“So, in each of these cells is a lot of these,” he points to the illustration, a basic model of DNA. “This is DNA, and it tells your cells what to do. It makes sure that each cell is doing the right thing, so that eye cells are eye cells and… er, skin is skin… so on.”

This isn’t as easy as he thought it would be. Grigoriy looks over to his son, who is… utterly terrified. Oh dear.

“If it messes up, could I grow hair out of my eyes?” Oh no. He’s crying. “I don’t wanna have hair in my eyes!”

Yekaterina chooses that moment to poke her head through the doorway. “Vityusha, you won’t grow hair out of your eyes.”

Grigoriy shoots her a look. She returns it, greying eyebrow raised high, as she fully enters the room.

“Dad said I would!”

“Your dad didn’t say anything like that,” she replies, crouching down and embracing Viktor. “You won’t grow hair out of your eyes. I promise.”

A muffled “Okay...” comes from the general area of Yekaterina’s shoulder. Viktor worms away from the hug and wipes his eyes.

Grigoriy, by contrast, feels completely lost at sea. His wife gives him another meaningful look, kisses him on the cheek once more (to the disgusted groans of Viktor), and leaves. Where was he? Cells, DNA, right…

“So the DNA tells your cells what to do. It tells them how to look, which is why people have different colors of hair, skin, and eyes. Your DNA comes from your parents, which is why you look like your mom and I…”

“But I don’t! My hair!”

“Sometimes the DNA doesn’t… do its job,” Grigoriy adds, pointing to the diagram. “These pairs tell your DNA what to do. Sometimes they get… mixed up or damaged. Then you have a mutation. Sometimes these mutations are good, sometimes they are bad… ah, and so you have some mutations.”

“Are mine bad?”

Grigoriy squeezes his eyes shut. How is he supposed to answer this? Yes, Viktor, they’re bad. You’re missing a finger and we had to have surgery done to give you a good quality-of-life. And even that didn’t fix everything. That would just make his son convinced that he was somehow defective. No, Viktor, they’re good. Some people dye their hair to look like what you have. That was just a lie. Maybe some did, but fashionable hair wasn’t worth these costs…

“They… they’re just mutations. They don’t make you bad. They make you… unique. Special.”

“Oh!”

“And…” here is where the real point of this comes through, “sometimes, people may say rude things about your mutations. Like when you go to school in a few months.”

“Because I’m special and they’re not?”

That is certainly one way to look at it. Should he dissuade Viktor from that line of reasoning? Tell him the truth: that children are cruel because their parents are, and that they will take any sign of weakness as a signal to attack? That Grigoriy and Yekaterina can’t be there for him at school, can’t defend him from unkind words and rumors? That he will carry these signs throughout his life, signs that Zaun’s atmosphere is toxic… signs that his parents, perhaps, were too old. That some would say that Viktor should not have been brought into this world.

How could Grigoriy ever package such harsh truths into something a child could understand? Maybe in a few years, maybe when Viktor is a teenager… maybe then he could be told these facts without them destroying him. He needs to be nurtured now, the flame of his curiosity tended to so it can grow into a fire. If this misbelief can guard him against those who would snuff his flame out, then there’s only one answer Grigoriy can give. He shuts the textbook with a thud.

“Yes, exactly that. So don’t listen to anyone who tells you that you’re anything else.”

[roses-adventures]

From my actual blog (originally an essay) regarding the dangers of misdiagnosis among people with chronic pain:

According to the Mightys' research shown by msn. Com, many people with fibromyalgia are misdiagnosed initially (n.p). This is partially due to the misunderstandings, discrimination and wide range of symptoms that fibromyalgia transmits. However much of a difficulty it is I believe that the medical industries disregard for fibromyalgia is potentially dangerous and many times involves continuous gas lighting from medical professionals because of this I believe that doctors should better educate themselves on the truth and new research on fibromyalgia.

          In order to understand why many may disregard fibromyalgia I’ll start by explaining what fibromyalgia is.Fibromyalgia is a fairly unclear medical condition. It’s not exactly known what causes the condition and whether it’s neurological or physical. Initially medical professionals believed it to be an almost mental condition that people with fibromyalgia thought they were in pain but in fact weren’t in pain. As medicine Improved it was thought that it is possibly both neurological and physiological, based on the symptoms it presents such as brain fog (also called fibro fog), widespread musculoskeletal pain and over a hundred other symptoms. To make matters worse fibromyalgia is different for every person who has it. It also has many related conditions that some have in addition to fibromyalgia. Some of those include but not limited to, lupus, multiple sclerosis and IV, I learned so much about fibromyalgia through years of research trying to understand the condition. The symptoms of fibromyalgia are varied and can change from person to person this can make it hard for doctors to diagnose.

         Typically these are also things that have overlapping symptoms of fibromyalgia. For some including me, fibromyalgia can present itself in childhood and be misread as pain amplification syndrome or even just growing pains. For me it was a lot of Balance issues, memory problems, and pain. Though my pain was not like it is today and I was told it was only growing pains. When I got into high school my junior year I went to an amusement park called wild waves, my brother who was young and very nervous asked me to ride the rollercoaster that was meant for small kids with him. I asked the attendant if it was okay and he even allowed other older people on the ride as well. We went around the ride and each of the four times it made the round my ribs slammed into the car. Hard. This caused instant and painful bruising. I went to see doctors and was assured it was only bruised and would heal in about six months. Well about five months later I got walking pneumonia and went to a respiratory specialist and a sports medicine doctor and later a physical therapist and a counselor for my mental health. Through this I was diagnosed with anxiety, depression and complex Post traumatic stress disorder. Even though these were my symptoms everyone has different ones and that means someone could have very different symptoms. Another thing that varies is that some like me have the major portions of fibromyalgia occur after a physical or emotional trauma.  health seemed to take a weird turn.

             Just as I began to think that my health couldn’t get any stranger, I was back in the hospital. I was trying to relax after a vacation to the beach and I then was poolside and swimming. I was still having every issue from the year before and I couldn’t help but try to find my own answers. Googling too try to find what I could be dealing with. I had come up with a couple of options based on my symptoms, one was fibromyalgia and the other was lupus. I noticed one day that I had a pea sized bump on my ankle. Thinking it was probably a mosquito bite I thought nothing of it. The next morning I was covered in hives we went to the ER and they told me it was just random hives, gave me Prednisone and discharged me by this point we realized it must be heat and stress related as when we reduced the heat and I stayed out of the sun and calm, my hives would go down a little bit. A day later I was completely swollen in my hands and feet, I couldn’t even hold a pencil or walk. I again went to the ER and they brushed it off and gave me more antihistamines and asked me to leave. The next day I went to the emergency room again for the third time. This time I had completely swollen lips, I couldn’t talk and my lips began to hurt. This time the ER nurse who had seen me all three days became worried. She had seen me all three days and realized I was getting worse and worse. She and the resident DR began to think that I had lupus, they sent me for tests and then referred me to a child’s rheumatologist since I was still under 18. Having a heat and stress rash is a less common symptom of fibromyalgia and when I mentioned it to doctors asking if that could be the cause they mostly dismissed it, however it’s common in lupus patients so doctors saw it as pretty obvious.

                 The rhumatologist I saw wasn’t too far from the hospital,  I will call them when I arrived at Dr. B' s office I was very disoriented. Between being swollen and on Prednisone and the extreme pain I was completely out of it. She bent my swollen joints back, I understand that she was checking my joint flexibility however she was very forceful and disregarded the pain I was in. She then got very frustrated with me when I was feeling disoriented. Even looking back on this memory is really foggy because I was so out of it it’s almost like looking through a  bubble, like it’s not me. We then talked about my blood test results. I was so ready to have a actual diagnosis however when she told me my results were clear I began to cry, it happened to be after I was told it wasn’t lupus. She turned to me and said “why are you crying, you don’t want lupus anyway”. My mom tried explaining that I was frustrated about lack of results. Dr. B talked to my grandma about fibromyalgia, which my grandma has and Dr. B told us that I probably have it however she’d loose her license if she diagnosed someone my age with fibromyalgia. She instead said I have hypermobility and pain amplification syndrome. I was given no treatment and told to wear knee braces, get expensive shoe inserts and exercise she told us pain amplification syndrome is the children version of fibromyalgia, and us not knowing any  different went along with it. In all actuality pain amplification syndrome is a condition that affects children essentially it’s having low pain tolerance and encourages using only exercise to make the pain tolerance higher. It is nothing like fibromyalgia. My reaction after was incredibly dissatisfied, I told my mom I was frustrated with her and that I didn’t feel like she was right. Now that I look back on it it’s so frustrating and upsetting, she had the perfect opportunity to help a kid who was in a lot of pain and instead she chose to tell them all they need is exercise and shoe inserts.

           So why is this a problem and why was I treated in this way? Well it’s a problem that people are often misdiagnosed because as I already stated being in pain chronically and having it go untreated because of misdiagnosis is potentially dangerous. According to a pain management

site called practical pain management states that they’ve seen an increase of death among people that have chronic pain that’s untreated (Tennant n.p ).What happens is that we have so much pain that is coursing through our body and people who are at risk can end up having sudden cardiac arrest. This condition is incredibly terrifying yet also extremely important to talk about yet this week is the first time I’ve ever heard of it. Aside from the medical issues this also causes psychological problems from being told you don’t have a condition or that the pain is in your head then it makes people feel like their pain is invalid. So why was I treated in this way and misdiagnosed? My age is a major factor. I was young seventeen almost eighteen and this causes controversies, it’s pretty difficult for people, both doctor and civilian alike, to understand that you can be any age and be in pain or sick unfortunately to me it seems to be similar regardless of education. It makes sense if we think about if we can even blame civilians for not knowing if doctors seem to think similar. Which means typically I get questions like “isn’t that something on older people get?” Or comments like “you don’t have that you’re too young to be in pain”. Then I have to explain that anyone can be in pain chronically. I believe that it’s really hard to look at children or young adults and believe that they may not be healthy because it’s something that’s not extremely common in communities. Another factor is that most doctors still believe that fibromyalgia isn’t real. According to pubmed they discuss how many doctors often dismiss and refuse to believe the condition is real. Especially older doctors I’ve realized have a more difficult time with the idea that this is a valid condition.

             I also believe another issue is that most women are often not taken seriously for their pain. This is often shown in many places and in so many woman’s personal stories and its very important to realize that this is also often why women begin to avoid going to doctors. This can be really dangerous for the women because leaving pain untreated can be really dangerous. Some of the accounts of things that women had endured regarding having their pain disregarded are written in Dr. Amy Millers post on practical pain management where she explores the different ways women’s pain is disregarded and how this can even effect if doctors look for adequate treatments for their illnesses.

             The last reason I believe I was treated like I was is my weight. It’s strange to say but this was not the first now last time I was shamed by my weight and told I’d be just fine if I were to exercise more. I’ve even been told by family that my condition is due to my weight. Unfortunately this isn’t uncommon for others in the fibromyalgia community many of the other people I talk to have similar stories of people who believe they’re helping but really theyre

hurting us by blaming weight as our only issue. My main argument against the idea that my condition is due to my weight is that before I ever got sick and even that entire junior year I was an active person, my sophomore year I was the top of my walking class even beating the athletes

 in the class, I hiked all through sophomore and junior year and only gained weight after being on Prednisone twice. My most recent doctor has told me that my weight is not my doing and that my body still hasn’t worked out all the Prednisone which is why I’ve been unable to lose it.

              I want people to learn from my story that fibromyalgia is real. It’s very real and pain is valid. Though pain may be different for all of us and fibromyalgia is different in most of us so you can’t tell if someone does or doesn’t have it. I also believe we need more and better research and medications, unfortunately the medical industry is still pretty uneven on what they believe which makes it hard to be properly diagnosed. I want people who are undiagnosed or feeling like they’re misdiagnosed to know that they should trust their instincts if something doesn’t feel right or like it’s working let your doctor know, and if you feel like the diagnosis is wrong, then it’s never a bad thing to get other opinions from other doctors and ask around to different groups on who they see and if they like them this is so helpful. I got my most recent doctor through my dad’s wife’s daughter who was having similar issues and he’s amazing so I definitely recommend getting other opinions. My last little thing I want people to understand is that what works for one person may not work for another, and exercise or that one special tea your great aunt’s brothers friend drinks to treat his fibromyalgia isn’t necessarily going to help someone else with fibromyalgia and actually can sometimes worsen their condition.  being misdiagnosed are huge problems right now and I hope that more doctors will begin to be   More open minded and take  it upon themselves to fully understand the condition itself as we begin to see more research come out towards the issue.

Work cited:

 

Tennant, F. (2019). Sudden, Unexpected Death in Chronic Pain Patients. [online] Www-practicalpainmanagement-com.cdn.ampproject.org. Available at: https://www-practicalpainmanagement-com.cdn.ampproject.org/v/s/www.practicalpainmanagement.com/amp/10608?amp_js_v=a2&amp_gsa=1&usqp=mq331AQCCAE%3D#referrer=https%3A%2F%2Fwww.google.com&amp_tf=From%20%251%24s&ampshare=https%3A%2F%2Fwww.practicalpainmanagement.com%2Fsudden-unexpected-death-chronic-pain-patients [Accessed 1 Mar. 2019].

Wyant, P. (2019). 16 Conditions People With Fibromyalgia Were Misdiagnosed With. [online] MSN. Available at: https://www.msn.com/en-us/health/medical/16-conditions-people-with-fibromyalgia-were-misdiagnosed-with/ar-AAxL38x [Accessed 1 Mar. 2019].

Bernstein, J. (2019). Not the Last Word: Fibromyalgia is Real. [online] PubMed. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4709307/ [Accessed 8 Mar. 2019].  

Miller phd, A. (2019). Gender Bias and the Ongoing Need to Acknowledge Women’s Pain. [online] Practical Pain Management. Available at: https://www.practicalpainmanagement.com/gender-bias-ongoing-need-acknowledge-women-pain [Accessed 8 Mar. 2019].