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phawareglobal · 2 months

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Joellen Brown - phaware® interview 465

Joellen Brown shares her experience with pulmonary hypertension (PH) on the 15th anniversary of her diagnosis. Joellen was born with a hole in her heart and had her first open heart surgery at the age of two and a half. She believes she may have had PH since birth, but was not aware of it due to limited research in the 1950s. Joellen emphasizes the importance of having a supportive medical team and family, as well as being proactive in advocating for one’s own health. She encourages newly diagnosed individuals to seek out support groups and emphasizes the need for early and appropriate treatment.

My name is Joellen Brown. I am in Newport Richey, Florida now. I was diagnosed 15 years in May with pulmonary hypertension. I was born in 1956 with a hole in my heart. Back then, there wasn't much information on correcting it or how they were going to go about doing it. I was about two and a half when I had my first open heart surgery and they put a patch on my heart. I went through the majority of high school, not being able to take gym, because they really didn't know if that patch was going to be pliable to exercise and all that. I was also told not to have any kids, which thankfully, I didn't listen to that. I ended up with three girls and no issues, and they were healthy. I've got three older sisters. I was the only one with the heart issues, so it wasn't anything like hereditary or anything like that. When I was about 40 years old, they told me that I needed to have another open heart surgery, because I had a tear in my aortic valve. So they went in and I have a cadaver valve. In my early '50s, I started noticing major weight gain and really breathlessness, tired all the time. I had been seeing a cardiologist all my life and nobody had ever mentioned that it was any kind of a lung or heart issue, it always had to do with the heart. I finally went to my regular doctor and she had me walk around the hall. At that time, my oxygen was 67%. I was sent home on oxygen. That's how my journey with pulmonary hypertension went. They first thought I had asthma, so I was put on an inhaler with the oxygen. That didn't work. I went to another cardiologist who was also a PH specialist. He's the one that diagnosed me with PH. But he had told me too, that I might have been born with it. But then again, back in the 1950s, there wasn't a lot of research on PH. So who knows? I might've had it all this life and not even realized it. So all that time, it's always been the heart thing. I'd always gone to the doctors. I didn't really have to worry about my weight, until after I had my kids and I had my second open heart surgery. That's when my weight started creeping up on me, which might've been back then, part of PH, I don't know. So now 15 years later, they're saying that my PH is from congestive heart failure and scoliosis, which is what I was born with. I was born with scoliosis, with the hole in my heart, so I have that against me as well. I think at the very beginning, I had a wonderful PH doctor. My team is what really got me through everything. But then again, that's well and good, but you also have to have that family support as well. Great, the treatment is helping you and everything, but you really need that mindset of having the support of your family to be there. Everything kind of fell into place when I was diagnosed. I want to think that I was one of the lucky ones. I didn't have to go through years and years and years of doctors. I was a special case, because of my open heart surgery at such a young age, on top of having the pulmonary hypertension. My cardiologist at the time, was also a pediatric cardiologist, and that kind of helped. Whenever I went in for any kind of test, they always had to work with my body and my issues. It wasn't like the same thing that they would do with somebody else. I want to think that it was all to do with the doctor I had at the very beginning. I am divorced. I'm pretty lucky that I'm able to still take care of myself. I'm a mother that I tell my kids everything. I don't want to keep it secret, because I want them to know that if anything ever happened to me that I can't speak for myself, I want them to know what I would want. So I know there are some other people out there that are like, "My family has no idea what I'm going through." I tell my kids pretty much everything. They've gone to doctor's appointments with me. They've been there when I've been in the hospital, and that has been wonderful. Right now since I'm in Florida, I have two of my daughters that live very close. That's been really helpful. But I'm not driving now too, so that's been a challenge in itself. But moving to Florida, my health has gotten so much better. My sister and I live together now. My lifestyle is much better because I do feel better. I think this was a great move for me health wise. I've lost weight finally after a year and a half. I have a great team. That's been probably the hardest part, moving. I look back at several years ago and how my health was at that time, which was not very good, and how much it is today. It's really has improved. I'm really thankful for that. I think that's a lot to do with your mindset and the team and fighting for what you need. It's definitely a journey I don't wish on anybody. The one thing that I always tell people that are newly diagnosed, because I've been on several sites on Facebook, is everybody is different. What's going to work for me might not work for you, but getting the right doctors is the best thing. But my biggest thing that I tell people is, everybody is different. You need to get that treatment right away. It's not a wait and see type of disease. It's not going to go away on its own. You need to get that right treatment. You have to be your own advocate. You have to be out there and ask questions. There's no right and wrong answer, but you need to know, because you only have this body once. You need to figure out how it's going to affect your everyday life. I had some great mentors when I first got PH, on Facebook, that are no longer here, so I try to remember what they told me to tell other people. I was born sick and I had to overcome a lot of stuff when I was little. I think that has gone on to me as an adult that is sick. I'm on oxygen now 24/7. I will always be on oxygen, so I try to be an advocate for getting the right type of oxygen I need. I don't know what would've happened if I didn't have the hole in my heart when I was little and all of a sudden, I'm 52 years old and I've got this life-threatening disease. I don't know if things would be different. It's still a shock, but I've always had people telling me, especially when I was younger, they were cruel to me at school, telling me I was going to die when I was 13. You live through that and you're like, "Okay, well, I'm 14 and I'm still here." I have more appreciation for my mother as I'm older, because I can't even imagine what she went through in the 1950s, taking me on the bus to go to the hospital and all that stuff. I can't even imagine that. What brought me here was my grandson. He lives across the street. That's my motivation to be well enough to see him grow up. That's me doing what needs to be done to keep me well. If it means staying in a lot more to stay healthy, then I'll do that. That's my motivation and just to be in spite of everybody that said, you can't do something. Just moving from Ohio to here was a trip and a half, having a friend of ours that had a horse trailer that moved all of our stuff here. Of course, I had to fly because I couldn't do the long trip. I still think we've been here two years and I'm like, "Did we really do this?" A couple years ago, I probably wouldn't have. But it's one of those that you wake up and you're like, "I'm ready. It's time." Where I used to live in Ohio, it was kind of an independent living senior place. Out of all those people, there was one lady in there that had PH at that time. I'm like, "I can't believe that I lived with somebody in this building that has the same thing that I do." She was on oxygen as well. Well, she ended up passing away. She was older than I was. One thing I would like to tell the people that are newly diagnosed, the best thing is to get into a support group. That really helped me, being around other people that have the same disease. I went for many, many years, took my mom with me. She enjoyed it. Learned a lot about pulmonary hypertension. I have not been able to find one here in Florida, so that's going to be on my bucket list for this year is to find a support group near me, or at least someplace I can get to. My name is Joellen Brown, and I'm aware that I'm rare.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected]

Listen and View more on the official phaware™ podcast site

#pulmonary hypertension #phaware #rare disease #lung disease #clinical trials #podcast #PH #asthma

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cuntess-carmilla · 4 years

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Common traits of Ehlers-Danlos Syndrome

I’m not a doctor, so there may be some details off here though tbh chronically ill people usually know more than most doctors. I'm making this post because there’s very little awareness about this, and people who fit the diagnosis criteria end up never being diagnosed and suffering in silence, even risking early deaths, as I now suspect happened to my grandma.

Definition:

Ehlers-Danlos Syndrome (EDS) is a group of disorders that affect connective tissue. It’s a genetic disorder that has no cure, but does have palliative treatments depending on the type of EDS.

All types of EDS are characterized by abnormal collagen synthesis. This doesn’t mean that you have too little collagen (necessarily?), but that the collagen your body synthesizes is and will always be altered or of bad quality, regardless of how much of it you synthesize.

EDS is regarded as “rare” by most doctors, but many patients believe it’s more common than they think, only being so “rare” on paper because doctors perceive it as rare, so they don’t diagnose patients despite fitting the criteria (search why EDS communities use the zebra as a symbol). Due to this, EDS communities encourage self-diagnosis, and many times even self-treatment.

Abnormal collagen sounds like it’s “only” one thing, but collagen is a key structural protein ALL over the body, so if your collagen is wrong, a lot of things are wrong or at the very least unusual. As a result, EDS affects the skin, ligaments, joints, blood vessels and other organs (including gastrointestinal organs and the uterus).

Common traits and symptoms:

Please, keep in mind that these symptoms don’t have to be super extreme to count. EDS symptoms range from mild to severe. Most of my symptoms aren’t remarkably visible to the eye, but they’re still bad enough that I suffer tremendously and it affects every single aspect of my life.

Take into account that many of the following traits/symptoms aren’t exclusive to EDS, but if you have more than one or two...

Joint hypermobility: Being "double jointed". The joints are so lax, that they luxate or even dislocate for as much as staying still in the same position too long. It can affect some joints, or all joints, small joints or big joints. It obviously comes associated with joint pain, including chronic joint pain. Can also manifest as scoliosis.

Skin elasticity: You can pull your skin (by pinching it) and it stretches more than the skin of most people. This can, in some cases, make EDS patients prone to skin sagging.

Abnormal scarring: The skin of people with EDS is fragile and elastic, and takes longer to heal. Abnormal scarring includes “cigarette paper” scarring, keloids, slow scarring and healing, higher propensity to stretch marks, post-inflammatory hyper-pigmentation.

Bruising too easily: The blood vessels of people with EDS are fragile to one degree or another. This makes us prone to bruising easily or dramatically, to the point some present spontaneous bruising. Spontaneous bruising might point to vascular EDS, in which case please seek medical help because it’s the most dangerous form of EDS. There’s cases recorded of parents who’ve been falsely accused of beating their children because of the child’s easy or spontaneous bruising.

Digestive and/or nutritional issues: GUESS what intestines and other digestive organs are made of. Yes, collagen. People with EDS are prone to having delicate digestive systems (IBS, nausea, constipation, diarreah and food allergies included), and/or difficulty absorbing the nutrients from our diet. This trait can be bad enough that the patient needs to be fed through a tube or have nutrients injected into their bloodstream, but most of us do fine with regular nutritional supplements (I recommend multivitamins and minerals). Among other things, the nutrient absorption issue makes us prone to excessive hydration due to imbalance of water-salt intake or absorption, and that’s a REALLY bad thing. It made my hair fall off MASSIVELY for years, and intensified my pain, brain fog and fatigue.

Chronic fatigue: Between the physical pain and bad nutrient absorption, most if not all of us experience chronic fatigue (as a symptom, not the disorder). This isn’t just being tired, it’s being exhausted to your bones for no reason all the time, even if you’ve done absolutely nothing in weeks. Might be pervasive, might be recurrent.

Muscle pain: When you have EDS Everything Hurts™. This can be exacerbated in EDS patients by imbalance of water-salt intake (generally leaning towards excessive hydration, but can be dehydration too).

Chronic pain: Everything Hurts™... All the time. It’s a general pain expanded throughout your body that just won’t go the fuck away no matter what you do. Except that this can be exacerbated by imbalance of water-salt intake too! Fixing mine made my chronic and muscle pain so much more bearable to the point that on a good day it’s GONE (just remember, your pee should NEVER be even close to clear, it should just not be solidly opaque, and you could damage your kidneys too by drinking too much water).

Brain fog: Linked to chronic fatigue and pain (ALSO POSSIBLY THE WATER-SALT INTAKE). Like chronic pain and fatigue, it’s not necessarily present every single day, but be recurrent instead. You can’t think. You can’t read or process what you read. You can’t turn thoughts into words. Your grammar goes to shit. You can’t retain or process new information. You can’t remember words that you KNOW you know. You can’t remember things in general. Someone asks you a simple question and it’s like they’re speaking to you in another language. You start to feel increasingly frustrated and desperate because you’re constantly disoriented and your mind is lagging like an old computer running on a 256 MB RAM memory. ERROR 404 BRAIN NOT FOUND TRY AGAIN LATER. Well, turns out you are not dumb, your body is not cooperating with you, and that includes your brain.

Asthma: Highly comorbid. Just... Everything is made of collagen, pal. EVERYTHING.

Autism: Don’t ask me why, but EDS and autism are highly comorbid too, so if you’re in the autism spectrum (same hat) and experience any or many of the other symptoms/traits listed, it’s very likely that you also have EDS.

Depression: It’s really hard to be "positive”, have any motivation or enjoy anything, when NOTHING in your body works right, Everything Hurts™ and you’re so depressingly exhausted that all you CAN do is lay in bed all day. People and doctors telling you you’re “faking it”, people thinking you’re lazy, underestimating how much pain and fatigue you’re going through, having to pull through all of that anyway because you have no other option (ie. your job is your or your family’s only source of income) does not help AT ALL with this.

Tight/narrow “inner plumbing”: In my case, my throat is so narrow, that swallowing one (1) small pill is genuinely difficult, and big pills make me GAG. But its not just your throat, it’s ALL your plumbing being too tight or narrow.

Varicose veins: The whole blood vessels being fragile thing. Most common in vascular EDS, please seek help if you think you may have that specific type.

Thin “transparent” soft skin: Again... FUCKING COLLAGEN. I think it’s obvious what this one means? Except it’s likely that it’s harder to notice the “transparent” part of it on darker skinned patients, but if you’re pale or light skinned, you’d be one of those people whose veins are very easy to see.

“Moldable” nails: Yet again, collagen is everywhere. Some of my nails (index and middle fingers) are slightly deformed because I tend to clench my hands A LOT by instinct and the continued pressure changed their shape.

Aracnodactilia, or “spidery” hands/fingers: The fingers are very skinny and long in proportion to the rest of the hand, can apply to feet too. Having very narrow feet (ie. your shoes are always to wide for you) is part of this.

Gynecological issues or abnormalities: Excessive bleeding during your period, bleeding outside your period, infertility, spontaneous abortions, pre-term labor, high risk pregnancies. Very common with vascular EDS too.

Dry eyes: I didn’t know about this one until like, literally two days ago but apparently it’s a thing, since the test this Chilean EDS specialist we’re hoping to see gives you, includes it as a potential symptom.

“Elongated” body, face (and its features) and/or limbs: Actually the aracnodactilia is often part of this. I also have no idea why but many EDS patients have “elongated”, narrower features, be it subtle or very visible.

Chronic fatigue and brain fog are really hard to describe properly to people who don’t go through them. Hell, even to people who DO go through them. So here’s two videos by Jessica Kellgren-Fozard (just in case, she was misdiagnosed with Chronic Fatigue Syndrome, but discovered recently that she has EDS, besides her neurological condition). All her videos have CC.

youtube

#ehlers danlos syndrome #eds #ehlers danlos #chronically ill #disability #chronic illness

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ververa · 4 years

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“Nothing’s Gonna Hurt Me With My Eyes Shut”

A/N: This is just a random idea. Also it’s bad. I definitely could do better, but it’s 2am, so you have to forgive me. Now that you’ve been warned I hope you’ll enjoy it anyway! <3

Wilhemina Venable x fem!reader

Words count: ~2 000

Wilhemina hated hospitals ever since she could have remembered. She hated hospitals and despised doctors even more. It was all due to her scoliosis and that one asshole doctor from her childhood. It had been years. but the resentment never faded.

The thought of the hospital itself was making her sick. And being there, even if just for a moment, caused her more distress than anyone could ever tell. If she could, she would most likely stay away from both hospitals and doctors, but it wasn’t that easy. Every so often Wilhemina actually needed some follow-up appointments. She knew it and as much as she hated it, she never skipped any appointment.

Wilhemina had one doctor. She always consulted him and no one else. He, even though a man, was the only doctor she tolerated. Or she thought so, because she felt like she had no choice. The man was the only person who could examine her and there was no way she would let someone else do it. That’s why she raged, when she found out he wasn’t at the hospital like he had been expected to. What was she supposed to do? There was no way she would go there again. Definitely not that week. Not even that month. She needed a lot of time to recover from entering the horrendous place. It cost her way too much to just give up and go back home. Though going to another doctor didn’t sound any better.

“We have a new specialist” the nurse from the reception centre informed her “A great specialist” she added, seeing Wilhemina’s hesitation

“Alright” Venable agreed after a second of thought. She didn’t really have a choice. At that point all she wished for was her appointment to be over as soon as possible.

“There. Room 33. You shouldn’t have any problem with finding it”

Wilhemina thanked the woman and moved in the designated direction.

There were a lot of people - patients and doctors and nurses. It was nothing unusual. She had been there before. She had seen them before. But no matter how many times she had been there it always made her feel anxious. Her nervousness never ceased. Nothing and no one could make it stop. And the fact she actually had to face a different doctor made it even scarier.

Ridiculous. That’s ridiculous. She kept telling herself, as she was approaching the doctor’s office. She was a grown up woman for God’s sake. She should not have such a big problem with that. It was just an appointment. Just another follow-up visit. But it required her taking off her clothes and exposing the part of her she hated the most. The part she was ashamed of. And maybe that’s what she hated. Maybe it wasn’t about doctors or hospital, but the feeling of humiliation. Wilhemina didn’t have any more time to consider it, as she found herself standing at the door of the doctor’s office.

Room 33 it was. Wilhemina sighed, then took a deep breath. Composure. She had to keep her composure. She knocked.

“Yes?! Come on in!” she heard a muffled voice. Wilhemina slowly opened the door and soon her eyes set on a young woman. Her back was turned to Wilhemina. The woman looked as if she was trying to fix the examination couch. She looked strange. Hilarious even. But what surprised Wilhemina the most was the fact that the woman didn’t seem like a doctor at all. As a matter of fact, Venable was sure she was just some assistant.

“Please, sit down. I just need to fix it. Ugh, I’ve told them so many times that they should change them to electric adjustable ones” the woman complained

“I think I may have come to the wrong room… I’m looking for a doctor”

“I am a doctor” the woman stated, not looking at Wilhemina

“I mean a real doctor”

“Yes. A real doctor”

“Doctor Y/L/N”

At those words you turned to face her - a small smile on your face.

“It’s you? You are… her?”

“Yes” you nodded “I’m doctor Y/N Y/L/N. And I can assure you I am, indeed, a real doctor. I specialise in orthopedics and physiotherapy. If it makes you calmer, I can show you my certificates”

“No. It’s fine. You just look very…”

“Yes?”

“Different from other doctors”

“Oh, well, maybe it’s because I’m new here or because I’m actually different” you smiled “Or both” you shrugged “Anyways, how can I help you Ms-?

“Venable. I’m Wilhemina Venable” she stated proudly

You nodded in acknowledgement.

“I came for my usual follow-up appointment with doctor Rogers, but they told me he’s not here and sent me to see you apparently”

“Wonderful!” you said with excitement “I mean... I still don’t have many patients here, so I’m just very excited. Oh Gosh, that’s probably not the right thing to say, but I can’t help it”

Wilhemina couldn’t deny that your behaviour was kind of endearing, incredibly unprofessional, but endearing.

“Please, sit down, Ms Venable” you pointed to one of the chairs at your desk, before making your way to sit down yourself.

Wilhemina sat down and watched as you typed something on your laptop.

“I need to have a look at your hospital record and then I’ll examine you” you explained

The redhead watched you as you kept scrolling, reading all the information about her condition. The grip on her cane tightened, when you moved. You looked at her and smiled sympathetically. Wilhemina’s doctor never smiled.

“Let’s move on to the examination couch. Please, take off your jacket and shirt… Well, it’s not your first visit so you probably know what to do”

Wilhemina sighed, putting her cane to the side. She slowly unbuttoned her shirt, but hesitated to take it off. Her hands were shaking, just a little bit, but you noticed it, the same as you noticed a little frown on her face. You could say it was causing her a lot of stress. You understood it. You had always been an incredibly empathetic person. That’s why you decided to become a doctor. To help people. To cure them and make their life at least a tad easier.

“Listen, I know it’s probably not nice, but I’m here to help you”

Wilhemina nodded. Her lips formed a thin line. She knew it. She knew you were there to help, but she just wished she didn’t need your help. She didn’t like the fact that she had to rely on help, on you or doctors in general.

“I…” she hesitated “I just really don’t like doctors”

“Oh… Would you believe me if I say that I completely understand?”

“No”

“Well, let’s sit down” you said

Wilhemina did as you said and watched as you approached her. She couldn’t help, but suddenly notice all the features of a doctor in you. The most significant - a white overall you wore was making her head spin.

“So, when I was a child I was terrified when I had to go to see my doctor. I still am scared when I have to be examined”

“But you’re a doctor”

“Yes, but it’s different. On this side it feels different. I don’t think about doctors. I don’t think about me being a doctor when I examine my patients. All I think about is that I’m here to help them and that’s my priority. The same as your priority is to get better, to get checked and go back home knowing everything is alright”

Wilhemina nodded, not looking at you. She couldn’t force herself to do it.

“You don’t like this white overall, am I right?”

The redhead nodded sheepishly.

“It’s okay. I don’t like it either” you stated, standing up and taking it off “Look, underneath I have normal clothes. I’m just a human. An average person who just happens to have a doctorate in medicine” you winked at her

Wilhemina tried to smile, but failed. She was still overwhelmed.

“How about you trying to close your eyes? It always helps me. Close your eyes and pretend I’m not here. I promise I’ll just take a look. I won’t touch you”

“O-okay”

You smiled, before moving to stand behind her.

“I always told myself that nothing’s gonna hurt me with my eyes shut”

Wilhemina took a deep breath and closed her eyes, letting her shirt fall off of her arms, exposing her back. She kept repeating your words in her head. She knew you were looking at her back, but as promised you didn’t touch her. And that made her feel a bit better. You made her feel better. Whenever her doctor was examining her, she felt humiliated, but not with you. Her doctor had no sort of empathy or gentleness, while you were overflowing with it. And that was something she actually liked.

“You can put your shirt on” you said after a moment. It was barely a minute, but it felt like eternity for Wilhemina. The redhead sighed with relief, opening her eyes. She quickly put her clothes back on. Then she stood up and straightened her skirt, making sure she looked presentable, composed. Her usual self was back, there was no sight of her distress no more. She did her best to suck it up, hide all the feelings deep inside, so that no one could see. Evading all sorts of emotion - that was her tactic. Though it didn’t always work.

“It wasn’t that bad, was it?” you asked, as both of you sat at your desk

“No” she said

“Everything is fine, Ms Venable. Your hospital record says that you complained about the pain. I can prescribe you some medicine”

Wilhemina was about telling you that she already had a lot of different types of pills, but you continued.

“I know doctor Rogers gave you painkillers, but I think that they’re not the answer to the problem. Not completely at least. I’ll prescribe you some pills that can ease muscle tension and improve blood supply. I’ll also suggest some exercises? I can compile a set of exercises for you if you’d like me to” you smiled

Wilhemina was a bit surprised. She hadn’t expected that any doctor could be so nice and helpful actually.

“Oh, and one more thing”

“Yes?”

“Do you drink coffee, Ms Venable?”

“Are you going to ask me out?” she asked nonchalantly, dead sure she could see through you

“Actually, I was going to say that coffee might be the reason for your trouble with sleeping” you stated, pointing at your laptop

“Oh… I-” Wilhemina almost blushed, she almost let her perplexion display. Suddenly too shy to come up with some witty response, but she’d not have a chance to say anything anyway, as you continued

“As a matter of fact, I wanted to ask you out at the end of the appointment, but since you mentioned it. Would you like to go out with me?”

“I... “ Wilhemina hesitated “Are you even allowed to go out with your patients? Isn’t that unprofessional or forbidden?”

“Well, technically it is. It may be considered unprofessional too, but practically you’re not my patient, besides I’m not wearing my overall right now. So, what’s the final answer?” you asked, looking at her expectantly

“Alright” Wilhemina said calmly, her face unreadable, but you didn’t pay attention. You scribbled down on a piece of paper and then handed it to her.

“This is my number. You can call me whenever you want to”

Wilhemina looked into your eyes, but said nothing.

“Oh, and if you hate hospitals this much, you could opt for outcalls” you said, as the two of you stopped at the door

Wilhemina raised her eyebrow looking at you.

“Trying to barg in, I see. Well, I’ll consider it”

“Great! I look forward to the next meeting with you. Hopefully, it won’t be at the hospital. And now I need to go, I have an operation to perform. It was really nice to meet you, Ms Venable” and with that you were gone, leaving Wilhemina standing at the hall of the hospital.

A piece of paper still in her hand. The redhead looked at your number. This time she couldn’t help, but smile. A genuine, big smile appeared on her face as she thought of seeing you again, this time outside the hospital and without her eyes shut.

The smile would most likely remain on her face if she hadn’t spotted some man looking at her.

“What are you staring at?” she growled, causing him to turn his head immediately

That was another reason for her hating hospitals - people staring, watching her. But this time she was in a good mood. Too good to be bothered by some odious man. Not to mention that all she could think of was you - the new doctor.

Tag list: @midnight-lestrange, @natasha-danvers, @stopkillinglilyrabe, @welshdragonrawr, @saucy-sapphic, @yang12e, @xixxiixx (if I somehow missed someone, let me know)

#it's 2am but who cares #why not to write about our precious purple queen #wilhemina venable #wilhemina venable x reader #AHS #ahs apocalypse #sarah paulson #sarah paulson imagine #ahs fanfiction #ahs imagine

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sageblogsthings · 4 years

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Do you have any tips on how to write characters with scoliosis in a respectful/accurate way?

Thank you so much for asking! I smiled like an idiot when I saw this ask. :) Let me preface this by saying that scoliosis can vary a lot from person to person depending on the severity of curvature, location of curvature, treatment methods, etc. So I think that, as with anything really, getting a wide range of viewpoints and voices on the issue will make it easier to write! Honestly just scrolling through the scoliosis tag on tumblr will give you a good sense of what it’s like for some people too. With that being said, I’ll talk a bit about my experience, and how I wish that characters with scoliosis were portrayed. Just know that my answer is far from universal amongst those with scoliosis. Also, medical treatment where I live is pretty shitty so I may have some other undiagnosed stuff that I’m attributing to scoliosis who knows lol. And I’m still learning a lot about it myself! Ok, with that caveat out of the way, here we go!

I’m gonna put a tw here for discussions of scoliosis, chronic pain, anxiety, and depression

Also, for those who don’t wanna read about my experiences with scoliosis, if you scroll down there’s 13 tips on how to write characters with scoliosis (a lot of these tips apply to chronic pain in general tho). :)

To talk about my own experience a bit, I was first diagnosed with scoliosis when I was about 10 or so. When I was first diagnosed they told me it was minor and just to watch my posture. Scoliosis runs in my family but for most of my family members it’s pretty mild so I didn’t worry about it and went on my merry way. In hindsight, not the best way to deal with that but ah well.

Flash-forward to college. I had been having back pain and headaches for awhile, but I just figured it was studying for prolonged periods of time, carrying a heavy backpack frequently, and not watching my posture when I studied. I never connected it to scoliosis because I hadn’t had a check-up since that first diagnosis. Again, not the best idea but life happens.

I just finished my junior year in college, and I have had almost non-stop doctors appointments all year. It started after I had some sharp pain in my lower back, and got x-rays to see what was going on. Several doctors appointments and an ER visit later I find out that my scoliosis has gotten significantly worse, and that I have a fractured L5 as well. One thing I don’t see mentioned a lot with scoliosis is that it significantly weakens your spine (usually lower) because your weight distribution is thrown off. I had a job that involved some pretty heavy lifting, and voila fractured L5. 13/10 would not recommend btw.

My curvature (I can’t get consistent answers from doctors) is somewhere in the 20′s in my lumbar region and in the upper 20′s/lower 30′s in my thoracic region. At least with the neurosurgeons I’ve spoken to, they don’t consider you a candidate for surgery until the upper thirties or forties, unless you have significant neurophysiological symptoms. Treatment options vary widely depending on where you live, what you can afford, and what your doctor will give you a referral for, but most doctors will recommend physical therapy off the bat. To my knowledge, most doctors do not recommend bracing anymore, though I think in children that might be different (not so sure on that). So currently, I am waiting on an appointment with a pain management specialist and will go from there.

Even though the curvature in my spine is relatively minor, I still experience significant symptoms. Some of these symptoms include sciatica, pinched nerves in my arms, legs, and back, muscle spasms in my upper back and neck, swelling of my hands and feet, and numbness or pain in my hands and wrists. Also, because my spine curves more in the upper portion of my back, my left lung cannot expand as much as my right lung. This isn’t always a problem, but I get shortness of breath pretty easily, and any respiratory infections make it super hard to breathe properly (pneumonia sucks a butt). There’s also the obvious bit of scoliosis where I stand a little crooked. Another thing I think that not a lot of people know is that how “lopsided” you are can vary from day to day. This doesn’t mean that the curvature is changing day-to-day, but the muscles may be more relaxed or tightened on some days.

So that’s my experience pretty much (bless you if you read all that!). But, to show an example on the opposite end of the spectrum, my friend had (I think) a 30 degree curvature in the thoracic region and 50 degree curvature in the lumbar. He had immediate corrective surgery (I’m not sure exactly what kind) and now aside from the scar on his back and that he looks like a table when he bends over (his words lol i’m not being mean) you would never know. And even weirder, he had no significant symptoms before his surgery aside from occasional sciatica. So your symptoms don’t necessarily depend on the degree of curvature, where the curve is located has a lot to do with it. Typically, more curvature in the upper spine is more painful but that’s by no means always the case.

Ok, so how in the heck does this all apply to writing characters? I promise it does, I’m not just rambling (well, maybe haha).

13 Things to Consider When Writing Characters With Scoliosis:

Their symptoms may vary from day to day. This may mean that some days they can do activities like running or baseball, and other days they can barely type or walk without pain.

They may have no, mild, or severe symptoms, depending on the location and severity of curvature, and other factors.

What is medical care like where they live? Dealing with doctors, neurosurgeons, physical therapists, etc. is just a part of having scoliosis, and very often an incredibly draining aspect. This is especially true if you have anxiety or other factors that make going to the doctor even more unpleasant.

Were they misinformed about scoliosis? Unless you go to someone who specializes in scoliosis treatment, you’re probably gonna get inaccurate information about something. For example, I was told constantly as a kid to watch my posture. Yes, this can have an impact, but more and more research is showing that scoliosis in many cases is influenced more by hormones (especially in teenage years) than posture. There’s also more egregious examples of this, such as a neurosurgery PA who recently told me not to ever use CBD to alleviate pain because it’s a “gateway drug.” This is literally impossible. So for writing, this could translate into frustration or even anger for your character. But it could also make for some funny situations later! I wrote down everything that crazy PA told me and it still makes me laugh from time to time.

Don’t give them a back-breaking job. It will literally break their back lol. I’m not saying they can’t be active, but if someone is impacted by scoliosis on a daily basis they probably aren’t working as a professional wrestler. Or maybe they are, and your story is trying to explain how that works lol

What do they do to manage the pain (if they have it)? For me, the symptoms are typically inflammatory in nature so things like ice, heat, turmeric tea, and anti-inflammatory medications help relieve the symptoms. This is one of those things where getting other viewpoints is good though too!

Is their spine visibly crooked? If so, are they self-conscious about it? This varies a loooot, and may even vary with symptoms. For example, maybe some days when the pain isn’t bad they wear a cute dress that shows their shoulder-blades. But then when the pain is bad, they just want to look like a hobo. I say this from experience lol.

Have people treated them differently because of it (positively or negatively)? Some people may experience bullying if their scoliosis is more visible, especially as a child. They may also be treated differently by adults, who are trying to look out for them, but nevertheless it still makes them stand out from other kids.

Do they make jokes about it? For example, I can be found frequently saying “my spine said yeet!” or “straight spine? idk her” or my personal favorite “my spine is about as straight as I am.” Scoliosis sucks, but living with it you learn to find humor in it too.

Are they going to get surgery for it? I can’t speak on this part since I haven’t had surgery, but I would imagine that there is a psychological aspect to this that you would want to mention for your character, as well as any logistical aspects like finances, dealing with trash insurance companies, etc.

How does scoliosis impact their mental health? This is one of my pet peeves, and it’s entirely founded in a lack of resources and education, so I’m not aiming this at anyone specifically. But scoliosis does impact your mental health, especially if you have pre-existing conditions like anxiety or depression already. It can be incredibly depressing to want to do something as simple as going for a walk, but you’re in too much pain. It can also really impact anxiety. For example, when I found out about my curvature change in college I had one of the biggest anxiety attacks I’ve ever had. There is also the added issue of not being able to breathe properly at times, which can make a panic/anxiety attack much worse (in intensity or duration). Of course, mental health issues can also be exacerbated by the environment you’re in, so that is definitely something to consider for your character.

What was their diagnosis like? What factors impacted their ability to get a diagnosis? Lack of adequate medical care or having crappy insurance is a huge problem, and it makes it really hard or even impossible for some people to get a diagnosis. And for most neurosurgeons or specialized treatment facilities you have to have that diagnosis and referral for them to be able to do anything. There may also be aspects of your character’s home life that prevents them from getting a diagnosis. Do their parents think they’re faking it, or that they just need to sit up straight? Is your character trans, and/or wears baggy clothing? I’ve heard several stories of undiagnosed cases because of this, so it’s something to consider.

Ok, I think this is the last thing (huge huge thank you to anyone still reading this!!). But please, if you’re writing a character with scoliosis, or any chronic issue/disability for that matter, avoid the trope of you’re still beautiful to me/you’re beautiful anyways/I don’t see your disability. Some people might not get what I’m saying here, so let me explain a little. If you have a character with significant scoliosis, to the point it impacts their daily life, and they meet another character (potential friend, love interest, whatever) and this new person grows to love them in spite of their scoliosis/disability, that is a huge red flag. It implies that they are seeing them through a lens of not having the disability, and they love that version of your character. But that is not your character in reality, because your character in reality has a very real disability. In general, just try to avoid the “I don’t see __,” in writing and real life. That could be applied to a disability, or the character’s race, sexuality, etc. In all cases, it dismisses a fundamental part of who that character is, and what experiences have shaped them into who they are. If your character has scoliosis and it has shaped who they are, it is important for other characters to recognize that as well, otherwise they aren’t really seeing that character in their “full glory,” if that makes sense. I’m rambling a bit at this point and I’m sure there’s other posts that make this point better than I have, but the takeaway is just please don’t write scoliosis as “you’re beautiful anyways.” Scoliosis or no scoliosis, it’s just “you’re beautiful.” Full stop. But part of how your character may come to recognize that beauty within themselves, or how others see it within them, may be influenced by their experiences with scoliosis.

Phew, I did not expect that to get so long but it’s a topic I’m passionate about and I haven’t seen information on scoliosis geared towards writers before, so hopefully this will help! Again, a lot of this is based on my own experiences so please do not take any of this as a universal guide to scoliosis, it definitely isn’t. And if I’ve said anything that people disagree with (or even agree with!) or have questions about, I am always open to polite discourse and discussion. :)

I hope that this answered your question some, and if not feel free to let me know! Thank you so much for asking this!

#ask #scoliosis #writing characters with scoliosis #kit chats #am i oversharing? probably #am i gonna share this anyways? yes #chronic pain #writeblr #representation #kit answers

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collectivedreamscapes-moved · 6 years

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Today I am thinking about limitations and disabilites and the fact that words of encouragement hurt me.

I grew up on ‘Anything is possible if only you believe.’ But the truth is you can’t be something you’re not.

Everyone has strengths and weaknesses. Everyone has things they can and can’t do. Success isn’t based on your IQ or your intelligence. I should know.

I will go to the mat defending anyone else I care about. Telling them what they can do when they feel worthless, offer encouragement, remind them they matter to me. I try to offer suggestions or a shoulder. I try to be supportive in the only way I really can.

I’m really good with words sometimes.

But for us? Sometimes words are just words.

Words don’t change days when I am physically incapable of sitting up without support, when just using my arm hurts, when walking is actually more dangerous than staying in one place but I still have to do it. Crutches help, but when my shoulder is also fucked up, they’re useless to me.

But resources only become avaliable with a doctor’s diagnosis proving you NEED the help and even then you have to fight for it. I don’t even have that.

Physically alone, not even getting to anything else, from the time I was 12 you know what I’ve been told? It’s not great but it’s not bad enough to need more help than 'this’. Physically, I have been diagnosed with 'minor’ scoliosis, degenerative bone condition (by one doctor at 16 and then never spoken of again by any other) and 'mild’ lupus (by one doctor after extensive testing and denied by four after an inconclusive blood test). I have had every inch of my body scanned, I have had multiple x-rays of every part of me (I joked at fucking 17 I should glow in the dark). I have been told I have fibromyalgia.

Every single doctor seems to think the amount of pain I am continuously in is more than I should be but none have any suggestions that are helpful. (Like yeah, I would totally exercise… if I had the energy to move and if the exercise didn’t cause as much painas not.) None seem to know why we fall as often as we do, why we have intermittent but persistent tremors.

When I have access to a wheelchair, I am a rock star. Because I can use them, because I don’t worry about random collapses, because I rely less on needing help. You know how much a wheelchair costs? Or how it doesn’t help in a house like this one?

I get tired of fighting the system. There are half a dozen specialists I have been told I should see over the last 15 years. My insurance (when I have it) makes that a helluvalot harder.

And this… is just the issues with pain I have had since I was 12. Since I was 12 what I have learned is that if there is no VISIBLE reason for something to be wrong, no OBVIOUS reason immediately discernible, then NOTHING is really wrong.

You see where this is going?

My disability determination is based on my PTSD and bipolar diagnosis. I get paid once a month because I’m too unstable to hold a job. But most people who encounter me casually don’t see that. Even therapists have said we appear to be such a 'bright, intelligent woman’.

In this society, people expect anyone with THAT kind of label to be a functioning member of society. I’m not. I never have been. I cover well. I learned the game. I can even play it fairly well. Or used to. Lately… not so much.

My father lost his leg in the Vietnam War before I was born. I never knew him with two legs. And he resented the word ‘disabled’ and everything attached to it. He wouldn’t even get a handicap licence plate or use the parking spaces (on days when he legitimately needed them) until he was in his 60s as a point of pride. I grew up with this man and hearing people praising what he’d done despite the lack of a leg. Is it any wonder we have problems with this concept of accepting limitations? Because we hear in our head 'he was legit disabled and did all that shit what have we got to bitch about?’

In our teens and 20s and 30s we were 'too young’ to suffer all our physical problems. And the psych shit? The only people who seem to care are those who have to deal with it personally.

And none of this was what we came here to write. We came here to write that sometimes things are legit beyond one’s physical or mental capabilities. And on days when I know I can’t function even to MY 'normal’, much less a NORMIE’S 'normal’, all I wanna do is cry.

I have spent my entire life pushing myself to exceed a 'normal’ I should never have had to be reaching for in the first place. But… as my father so eloquently put it, I was starting with two strikes against me: being black and being female. having to work harder to get the same consideration is a reality. You add the OTHER shit in there?

I’m now 44 (or the body is anyway). After four decades of pushing ourselves so fucking hard, is it any wonder we’re fucking tired and hopleless all the time? We’ve spent so much time fighting to appear normal, is it any wonder that accepting the word 'disabled’ is like a punch to the gut?

The truth is we’ve been disabled for a damn long time. The truth also is that in my family ‘disabled’ was another word to mean ‘excuse for laziness’. It hurts way deep down every time the word is applied to us, even knowing how accurate it is. Because we’ve seen how people treat those who are disabled. Because we’ve never really considered ourselves part of their number deep down. Because we have fought tooth and nail to be… everything but what we are.

My dad used to say he never told us that asking for help is bad. And we could never, as a kid, articulate why that statement rang false. Because no, he never said those specific words. But kids learn by observation and everything he did screamed that you don’t ask for help. And 35 years later... this is still one of the biggest problems we have. We have been told that we honestly should ask for help a LONG time before we actually do, which continuously boggles our mind. Because in our heads, you are supposed to exhaust EVERY option and push yourself to the absolute limit before you ever consider asking someone else for help.

So most ‘positivity’ posts and words of encouragement... hurt us. So much. It’s like poking half healed wounds. They feel, to us, like empty words uttered to make the person saying them feel better. And we get that’s not always the case, but it doesn’t change our gut reaction to it. It has nothing to do with wanting to be jaded and cynical and edgy and everything to do with emotional wounds that still fucking hurt.

#long post for ts #personal #amelie #lanie #we have no idea how long this has been sitting in our drafts #but we're gonna post it

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froggiethelesbian · 3 years

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A old ass specialist I had to see told me he wasn’t gonna see me again for my thyroid if my levels came back normal and tell my doctor I don’t have a hypo thyroidism because one of the three tests I had months apart my leveles were normals.

My levels were normal in that test cause of my period

My levels just came back from that one cause my period just started the day after

I’m probably going to have to take more blood tests at the end of the month to show me as low, go back to the 75 year old man after spending a month in waiting *again* because this man said my leveles weren’t concerning enough and he isn’t looking at my family history of an auto immune disease that attacks the thyroid

I hate doctors who do this. Say that my levels aren’t low enough or my symptoms aren’t severe enough. What do I do now then?

I can’t sleep, I can’t stay asleep, my hands and feet are freezing all the time and my heart is almsot always above 100 bpm

Why do doctors think it’s okay to just let people suffer???? It took doctors over a year to pin point my back problem as the sack under my shoulder exploded and caused me a bunch of scar tissue because they all wanted to call the small bend in my back scoliosis even tho you need a ten degree turn to be scoliosis and mine was a three

I fucking hate doctors and their dumb bs

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merpaderpitsaqua · 4 years

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So sorry if there’s any spelling errors im trying to use the text to speech because I find that will probably be a lot easier then typing lol

So I initially started experiencing my back pain roughly around the time that I was 11 and we actually didn’t have a diagnosis for what was going on, I had visited my family doctor on several occasions complaining about back pain, hip pain things of the sort and for the longest time my doctor actually had accused me of faking to get out of school. This became a back-and-forth ordeal for me so in turn I had just blamed my pain on growing pains. Not being taken seriously by my doctor was probably one of the worst things that could’ve happened to me. So fast forward to being in grade 7 and 13 years old. There was a period of time where I had lost the ability to walk and I had to unfortunately attend school using a wheelchair so once I was hospitalized the doctor on cal had decided to order in some x-rays for me. The resulting x-rays had shown that my spine had shifted and twisted, however it wasn’t serious enough at the time to diagnose with scoliosis. My recommendations were some physiotherapy, medication and to keep an eye on it. Of course I didn’t take it too seriously because they didn’t seem to take it seriously themselves so when I was roughly 15 years old I had to drop out of all of my extracurriculars because the pain wasn’t manageable anymore, I was a professional dancer and I also was in gymnastics and had recently been accepted into the cheerleading team. Despite having to abandon my activities at the time I really didn’t think too much of it, for years I was told that my pain was false and that my reaction was over the top so in turn I neglected my own health and doubted myself. It wasn’t until a gym class I was attending with a student where I had realized just how bad my spine had gotten.

So what happened was we were supposed to be doing an activity where we helped our teammates stretch and the girl that I was paired up with had laid both of her hands on my upper back and felt a very large mass, immediately she squealed in disgust and exclaimed “oh my god what is that.” Feeling self-conscious I ran to the gym bathroom and took an actual proper look at my bare back for once and lo and behold there was a large massive mass on the right upper side of my back. My spine also was visibly twisted and I really do not know how anybody never noticed this because once I had noticed I could not stop. I went home and immediately showed my mother my bare spine. then I proceeded to touch my toes and it showed that my right shoulder blade was roughly 4 inches taller than the left side. Immediately I booked an appointment with a specialist in a city located about four hours away from my hometown. After performing an MRI and a side of x-rays we found that my spine was curved at roughly a 43%. I was recommended that I should wait until I was done growing to proceed with surgery but in the meantime a back brace would be a viable option. However we found that this option did not work for me because of the rib hump that was also linked to my scoliosis, the hump pushed into my lungs when I wore my brace and caused major difficulties with breathing.

At the age of 16 my curvature had increased to a whopping 68% and at that time I did not want to even think about surgery I was absolutely terrified knowing the complications associated with it.

I thought to myself my spine may be ugly but am I mentally prepared to go through with this type of procedure. I thought well it can’t be that much of a danger to me. A few months later I had very little pulmonary function in my lungs due to the rib hump pressing into me, at this point in time surgery was my only option and I had no choice but to go through with it. The day of my surgery my curvature was at a 71%. 11 hours later Dr. Deus Got my spine down to a 9%, I was told I would be able to get down to a 17% at best. In turn I ended up being one of her most successful surgery’s.

Post Op

The day I woke up from surgery was the toughest day of my life, I actually don’t really remember the first three days because after the intital wake up period I was immediately knocked out with medicine. Anytime I naturally woke up I generally had started off with crying and whining. The first 2 days I was blind, my eyes had swollen shut due to being on my stomach for the entire surgery so the little spouts of being awake I couldn’t see and it led to further panic. My doctors and nurses were very patient and calm with me and I received medication by IV 24/7. During my time in the hospital Dilaudid became my best friend. Day 4 would’ve been the first day that I had attempted to walk. Learning to walk again was the hardest part of the journey, my body should’ve already known the motions but for some reason I didn’t have the strength stamina or power to move forward, I couldn’t even stand on my own without assistance. My frustrations had kicked in by day 6, when I still couldn’t successfully take a step despite the aid I had gotten. (Later on in life we found that I actually have a neurological problem so I think that played a very big role into why I wasn’t capable by the time I should of been) Day 7 would’ve been the day that I took my very first step, By day 8 I was able to walk down a 2 meter corridor with assistance. This was the criteria for me to be released so I was free to go. The initial 3 months after the surgery were spent in very intense physiotherapy. I primarily used a wheelchair for the first month than the second month I had switched over to a walker, eventually to a cane and then finally I was able to walk without assistance after about 9 weeks. I never truly did make a full recovery till roughly 2-3 years after the surgery, in that timeframe I had monthly visits to my surgeon and weekly appointments with a physiotherapist. My sessions were 2 hours long every 5 days, they included cardio and stretches catered to my condition. I also was heavily medicated for roughly 5 years afterwards, I took a mixture of Dilaudid, oxycodone, tramadol, Toradol, and Baclofen all prescribed by my family doctor and the side effects that came along with the meds made me consistently sick. It wasn’t until I turned 22 when I was finally able to get off of all the meds, my doctor had recommended medicinal marijuana which had been recently legalized in Canada, ever since I switched over to that I never had to take a pill ever again.

at the age of 23 I am a well functioning adult I don’t experience pain as severe as I used to and I am more than thankful that I went through with my procedure despite the difficult road it had lead me on. I hope this could help share the story a little bit! <3

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kriscynical · 7 years

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To young artists, a plea:

For any of my followers out there who are young artists, please listen to me here for a second:

Take care of your damn bodies.

Please. When you’re working on something, it doesn’t matter how “in the zone” you are, get up. Stretch. Walk out to the kitchen to get a drink or a snack. Just do something. Don’t sit in one position hunched over your work area for hours at a time without moving.

If you can afford it, have a decent desk chair. I had a shitty $30 chair all through college. Don’t do that if you can help it. Invest in a good desk chair if at all possible. I know money is tight at that age, but please try.

Get an adjustable foot rest for under your desk, especially if you’re short like me (5′2″ if I stand really straight). You should be able to afford one of those because they’re not stupidly expensive. Mine was about $15. Using one of those naturally makes you sit with proper posture which is much better on your spine than hunching over. They look something like this:

If you use a backpack for school, wear it on both shoulders, not just one. If you use a messenger bag, wear it across your body rather than over one shoulder like a purse. If your purse allows cross-body wear, do it. Try to not load it up too much for weight.

I’m saying all of this because I didn’t take care of myself and now I’m paying the price for it. I’m only 33 but a lot of times my spine makes me feel like I’m 80. I know that if you’re in your teens in particular you think you’re invincible and nothing can touch you, but you’re so very wrong.

Long story short, I messed up my spine and permanently damaged my nerve system from not taking care of myself. My career nearly ended at 26 because I went numb from my earlobes down to my hips, I couldn’t hold a pencil/stylus or take care of myself, and even had problems walking. It was because the vertebrae in my neck had cut off the function of the nerves that pass through a hole between them all the way down your spine, and the beginnings of scoliosis in the rest of my spine had thrown everything out of whack. It took months of intensive therapy with a chiropractor (after a month of testing from other doctors and specialists who couldn’t figure out what was wrong with me) before I was able to get the feeling back in my torso and hands. I still see her every other week for maintenance so it doesn’t happen again.

The nerve damage I sustained has left me with flare ups of hypersensitivity, and when it doesn’t hurt it’s maddening instead because I cannot sit still. The closest I can describe it is restless leg syndrome, except it’s my entire body below the waist. When I flare up I can’t lay down or sit. I have to stand. It’s very frustrating when you’re exhausted but you can’t lay down to sleep, you have a killer idea and tons of motivation to execute it but you can’t sit to work, or you’ve waited excitedly for months to see a live performance of something or a big movie but can’t sit peacefully to enjoy it. I have to carry hydrocodone with me wherever I go because it’s the only thing that makes my flare ups calm down and allow me to function. I have muscular problems relating to my spine all the time, too, like today. It’s been particularly bad, so I wrote this.

So if you’re young, PLEASE take care of your body! I didn’t, and now I will have to deal with these problems for the rest of my life. Simple things will keep you from damaging your body. Please do them!

#sorry for the long post #artist problems #personal shit #i am a big fat artist #advice #health #text #shut up kris

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spinalfusionrunner · 5 years

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Who? Me?

What comes to mind when you think of someone who has back problems? Often you might think of someone who can’t bend over, who can’t walk well, can’t lift things and most certainly can not run. Exactly what I thought of myself, especially since that is what I was told a good portion of my life at least. My name is Val and I am defying the odds of being a female runner with a spinal fusion, one step at a time.

I was diagnosed with scoliosis in 2004 and was told the growth of my spinal curve was progressing quickly. A spinal fusion was in my near future. It all was a blink of an eye when I had grown up horseback riding every day, biking, riding ATVs, performing barn chores, lifting things of all shapes and sizes to “ you can’t ride for a year”. Fall 2009 a spinal fusion was performed on my 85 degree curve, stabilizing my spine, but not improving the curve much. My life had changed forever. Shortly after that it seemed like people liked to tell me more and more what I can and can not do. I found myself in 2010 pretty stuck with what I enjoyed doing, I was away at boarding school now, not on the horse farm everyday, limited to what I was able to do since I was still healing from the spinal fusion. I enjoy exercise, I enjoy sweating, I like to feel accomplished, that i’ve taken care of my body. And suddenly it felt like I didn’t know how I was supposed to do that.

Current Xray of my full spine

2011 I was able to ride again, I found myself back riding horses, but things just didn’t feel the same. I was at boarding school so it was limited the time I was able to spend at the barn, it was basically lessons and back to campus. That isn’t the life I used to live. I used to wake up in the morning head to the barn and be back home 10 at night on weekends. Work several horses, jump a few, lunge a few, take care of tack and other things around the farm. It just wasn’t the same. I had gained weight since my surgery and was significantly out of shape when it came to riding. But this limited time was not getting me the time at the farm I needed to be myself again. I wasn’t as active as I used to be and being away at boarding school was not going to change my barn life. I was not one of those girls who enjoyed an hour lesson after school. The farm was my life, not a hobby. I decided at that point riding would become a secondary thing for me and I would need to make something full time for myself to feel that feeling of accomplishment again.

I enjoyed hiking, that was one thing I could do for hours, days, weeks, months (and I have!) Backpacking specifically was something I loved to do but comes to find out probably isn’t the best idea. I backpacked with a group for 108 days in Pisgah, DuPont and Nantahala National forest in North Carolina and it was eye opening, exhilarating! However the packs were relatively lighter, resupply was once a week, and we never had a whole lot on us. Between my junior to senior year in high school I decided to buddy up with a friend and take on a NOLS (National Outdoor Leadership) course. It was a backpacking trip in the Pacific North West, Cascade Mountains of Washington State that would run for 30 days. Psh 30 days? I’ve got this I thought. The day we prepped all of our gear and prepared to be taken out to the trail head, I realized things were a bit heavier than anticipated. I surely didn’t want to speak up or have someone carry more than me, that is embarrassing. So I carried on. About a week into my course, carrying these heavy bags, up some slippery terrain, ice, mud, water, my back decided this was it. I felt a huge pinch in my back, down my left leg, my toes tingled and I went down. I kept feeling as if I could not feel my left leg and everything was pins and needles. I was helicopter lifted off of a mountain (OH yeah that was a pretty bill to pay for...) After examination at a hospital in Seattle, it was shown that it was purely muscle spasms and nothing of my fusion or hardware had been misplaced. Kind of embarrassing for that much pain, and all I wanted to do was fight through it and be with my group. I spent a week locally to the NOLS base in Washington state while my group came back down for resupply to a near by trail head, they allowed me to rejoin with my group as long as I carried less weight. I enjoyed the rest of the trip and didn’t push myself to any extreme limits (however this was what this course was intended for...) Maybe let’s stick to hiking and a little less backpacking.

NOLS PNW 2011

Last semester of my senior year in high school I decided I wanted to join cross country. Why? Living at home in New Jersey I had really enjoyed going for a jog around the community from time to time and thought this may be the opportunity to make a hobby full time versus “part time” like my barn life had been cut to. Here I was standing in the gym lobby waiting on my Spanish teacher who was also the cross country coach, Mirna Valerio. Who would have known this decision I made would land me knowing I trained with who is now known as “The Mirnavator” now! Not me!

I enjoyed the runs! Ms. Valerio would take us to all different roads and trails, it was great. A couple weekend 5k races, I had the opportunity to do a 5k for the North Face Endurance Challenge in Bear Mountain State Park, NY (very challenging but awesome!) Some back pain started setting in. Lower back and part of my ribs had been feeling a bit odd. The school nurse recommended I see a physical therapist. A visit with my orthopedic surgeon first, who confirmed everything in my hardware looked fine as well as my spinal fusion, and off with a recommendation for physical therapy I went. Tuesday evenings I was now taken after classes to a physical therapist. I was confused because the exercises I was being given were not really helping, but I was continuing to be told that “you know, these kind of back problems and running don’t really mix” and that was that. My orthopedic doctor/surgeon never said this? Being 17 at the time, I was supposed to trust doctors opinions and go with it. I really wanted to run in college, but with continuous setbacks like this doctors assured me, and I just knew it was not going to happen. After high school came a huge gap in my journey to run.  

In college I was blessed to be living in Brevard NC, surrounded by beautiful forests, mountains and trails. Where would this take me next! I got tons of day hiking in, some small trail runs, learned how to both mountain bike and road bike, but still physically at a stand still. Nothing felt that “good” because I knew I was not supposed to push myself. Everything seemed to be “once and a while” or for shorter periods of time. I wanted to feel the accomplishment, the feeling that my body had done well for it’s self. Nothing I did, made me feel like that. As with college, came gaining even more weight.

I left college about two years later, moving to Maryland with a friend who was originally from there. There I got trapped into the world of retail and found myself quickly having no time for any activities in which I enjoyed. Certainly not hiking, no running, barely any vacations. I lived my life several years just that way. It wasn’t until 2018 that I took a stand. I want to run! that’s it! I want to do a 5k race every month starting March and take it from there. I wanted to make sure my back was in good condition to start doing my little 5ks again so I took myself to a spine specialist in Baltimore, Maryland. This was the one doctors visit that changed everything. I had xrays done, and I waited in the office for the doctor to meet me. He shook my hand, took a look at my xrays and said, “What exactly would you like to do?” I replied “ I would really like to start running again” “How long? What distances?” “Uh, i’m not sure, i’d like to do a 5k race once a month, maybe one day even do a couple 10k races, or a half marathon!” Giving me the nastiest look I have ever gotten from a doctor he replies, “Everything looks fine with your spine, your surgeon clearly knew what he was doing, but you see these discs between your vertebras? You have a pretty significant spinal fusion, so there are only two lower discs left. They are in good condition, however if you are to run on them they will quickly disappear and you will need yet another spinal fusion” My voice began to shake a bit as I replied, “Do.. do you think I could run a couple races, maybe one day one 1/2 marathon and then call it a day?” “YOU are not built to run marathons, I run every day and have run several marathons, but my spine is evenly dispersing the weight between all of my discs, you have two, an uneven set of two which will degenerate quickly” And there came the tears.

He assured me that my spine appeared in good health and “don’t loose any weight but surely don’t gain any more weight” but basically don’t do anything in between. Which sounded entirely odd. I was in disbelief. My whole life I had doctors telling me to be careful, people telling me things were not a good idea to do because I had a spinal fusion from scoliosis but this really hit me hard. I called out of work the next day. Waking up a day after that nightmare of news seemed unreal and the tears began to roll again. About a week later I wanted a second opinion. I felt like something wasn’t right. I called the office of my original pediatric orthopedic doctor, who was my surgeon and asked the nurses if when he was not busy if he could call me back. A couple days later he did. He was always very supportive of my recovery, what I had previously been doing, what I liked to do etc. He was quite confused why the doctor I had seen in Baltimore was being so conservative about my back. He believed that those may be things one day I may have to worry down the road, when i’m in my 40s or 50s but who isn’t having some kind of back issue at that age anyway? There may or may not be procedures down the road I need wether I run my heart out or sit on the couch until then. The last words he said and which I life by every day are “Val, if it hurts, stop. If it doesn’t? keep going” “Listen to your body”. Which I do every day!

My training from that day on, 10 months later, I have become FIT, I lost 1/4 of my body weight. No doctor or physical therapist wanted to tell me I was overweight and that may be why my back was causing me issues. No one wanted to tell me maybe these exercises work well for scoliosis. No one ever said strengthen your core it’s the building blocks to a stable spine, stable back muscles. All of these were contributing factors as to why things were not working out for me and now they are! I went from 13 minute miles, to pacing 10ks at 8 minute miles, 1/2 marathoning at 9 minute miles. I feel fantastic. I feel good about myself. Anything that hurts, wether it’s from muscular imbalances to small back strains I overcame with learning what works best for my body. I placed first in my age group for a 15k, my first 1/2 marathon I came in third place for my age group which was third from the top overall women’s finisher. I am defying the odds everyday. Every body can be a fit body. You just need to learn yourself. I hope to share my personal experiences and inspire people to defy the odds as well, you are not limited to what your body is “supposed to do”

Left- 2011 North Face Endurance Challenge 5k (2012)

Right - Delaware Distance 15k (2018)

Delaware Distance Classic 15k First place Female 20-24 (2018)

April 2017- August 2018

#spinalfusion runner spinalfusionrunner vegitarian vegan halfmarathon 10k 5k distancerunner

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anothergirlrecovering · 7 years

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Wedding weekend

I was in my college best friends wedding this weekend, and I'm honestly so glad for it. We literally had such a good time, and it was so good to be around people who make me laugh. Not just a regular laugh, but that deep belly laugh where you end up crying from laughing so hard. It was a long drive, a full 9 hours but somehow it didn't feel too bad of a drive. Weirdly enough, my husband and I didn't end up fighting at all. He slept for a good bit, and I listened to Waving through the window on repeat for a while. It's definitely my new favorite song, and I'm hoping i'll be able to see it live on broadway this summer.

When we got to our hotel, we checked in and headed to the rehearsal practice. There was literally one car in the parking lot, so I called sandi and asked what time it was. She told me it didn't start for another half hour and I immediately knew kit had lied because she thought I could be late. Thankfully I sort of just laughed it off and jokingly texted her saying I knew she lied and I was totally early. She called me laughing and said with such a big drive she just wanted to play it safe. She got there 15 minutes later, with a few of my old college friends, one being a girl named nastasha who I had hated in college. I was instantly bummed thinking about how awkward it would be, and feeling like my friends would ditch me for her, but I decided to try my best to be not awkward. We went inside, and sandi and I ended up sticking together since we were both in the bridal party. During that time we watched as my husband and her husand hung out with nastasha laughing and telling jokes. In the meanwhile sandi and I laughed on stage telling jokes and being shushed by kits future sister in law. I felt like a high school kid again, but I didn't exactly care because the part they were going over wasn't relevant to us. After the rehearsal we went to the rehearsal dinner and we ended up just laughing the majority of the time. They brought out the food family style, and I couldn't help but die of laughter when sandi said she hoped they bring out more choices in food. We laughed and talked about the time it looked like I shit myself but had fallen asleep in melted chocolate. And sandis husband told a story about a guy who yelled my bad queeda, which ended up being a phrase we continued to laugh about. When it was over I suggested we all go see the lake since I hadn't been. We walked around the sandy area and the rocks and laughed and took pictures. It was so nice just not caring about anything and being able to be happy. Ceselie and I had some time alone together and we ended up in a deeper conversation. She shared about how she has an issue with skin picking and has since undergrad. She asked if I remembered her diet pill and I laughed and said she must have been sensitive to my ed because she didn't tell me about it and she said the skin picking was triggered by that and never went away and shes seen several doctors and specialists but they cant figure it out and how to stop it. She said it makes her self conscious and when I asked about emdr and negative cognitions she laughed and said oh no don't make me dump all of my worthless negative beliefs out there. We laughed. Shes a therapist too and I told her about how making myself puke after the bachelorette party had given me anxiety because I hadn't vomited on purpose since being in recovery. We offered to drive her back to her hotel, thinking it was across the street but it was not. She put in no tolls and it ended up being a 45 minute drive, when it should have been 20 if we had just paid the toll, which we did on the way back because it was late and we were so tired and over driving.

The morning of the wedding we all went to the hair salon for our hair to be done. I didn't realize how many opportunities there would be to correct kits sisters shitty body shaming, and overall reminding everyone that its okay to enjoy all foods in moderation. We ordered chick fil a and enjoyed every minute of it because we were literally starving by the time we got to eat. Nastasha was sitting next to me and it was just the two of us, so I laughed and said hey do you remember that time we both hated each other in college and weren't friends? She laughed and said she was literally just thinking about that yesterday. I said I just wanted to say that I was sorry because I look back and realize that I wasn't always very nice and that I hadn't given her a chance and I have grown a lot since then. She thanked me and said she was sorry too and felt like we both hadn't given each other a chance, and she was thinking about how cool I am and was confused as to why we hated each other. I said I was immature and she was ditsy and for whatever reason we clashed. She laughed and said she is still ditsy, and we said we were both glad those days were behind us. Then we laughed about how weird our RA was, and how far we have both come. There was also a little girl who was maybe 9 or 10 and the hair stylist asked her how she wanted her hair. My heart melted when she said she wanted her hair just like her mommy. My heart broke when the mom rolled her eyes and said no, get something different. But melted again when the little girl said but I want to look just like you mommy. And broke again when the mom said ugh don't say that.

The wedding itself... So I took my propranolol and walked down the aisle at ease. Smiling like I'm supposed to. My scoliosis was killing me on stage, but I got through it. When it ended, sandi and I walked off stage together and we headed outside to blow bubbles. We all stood outside for a while waiting and talking and laughing and taking pictures. After blowing the bubbles, we went back in the church for a few pictures. I sat beside an adorable 6yr old macy, and asked her if it was ok to sit by her. She said yes and I made kid small talk, asking what her favorite part was. She said it was when she got to walk down the aisle, lol, and she told me that everyone was laughing. I asked if she thought the other girl might have made silly faces but she said no and laughed nervously. After taking a few pictures in the church we went on a party bus to go take pictures at a park. On the ride to the actual reception, I saw macy looking bored and she hopped up and sat beside me giggling. I could tell that she was bored and over it and had been ignored the entire time so I smiled her and asked if she wanted to play a game. I spent the 30 minute drive playing bubble gum bubble gum in a dish and a hand slapping game. We laughed together and I let her win a few times. She said we had to say kazam before slapping. I asked her how old she was and she said 6. I instantly got a bit sad looking at her, seeing how cute and innocent she was, and realizing that I was her age when my anxiety and panic attacks started happening. Sometimes its easy for me to brush off my young clients as different than me because they had such horribly different lives, but this little girl has no trauma history and was just simply a sweet little 6 year old. I had the half glass of champagne for the toast to kit and her husband, and avoided the whiskey because I knew we would be drinking wine at the wedding.

The reception... So I ended up way more drunk than I had meant to be. We got there and I was seated beside sandi. I said hi to my husband and took my seat. Everyone had a glass of wine with the best man and maid of honor speech. And then things began to get a little loopy. I remember complaining that we didn't have any potatoes at our table, and I remember sandi and charisse complaining that we were out of wine. Rachel, the sister in law who had shushed us at the rehearsal practice, got up and brought back wine and potatoes from the bride and grooms parents table, commenting on how our waitress sucks. I remember having another glass of wine, and that we talked about sex. I remember laughing and saying how I hate bjs and ran away after the last one to wash my mouth out with soap and that I almost tripped and my husband jokingly said run forrest run. They laughed and shushed me, and Rachel turned around laughing and saying she heard me and wont even put it in her mouth. Then we talked about what positions we liked and didn't like. And then I have no idea what exactly happened next, except that sandi and I must have kept drinking with charisse. I remember standing with them and laughing and taking some of sandis drink and some of my husbands drink. The rest of the night is a blur of random moments. I remember being on the dance floor and dancing, but I cant remember any specific songs. I cant remember any of the father daughter or mother son dance. I cant remember the cake cutting. I cant remember the garter toss or the bouquet toss. I remember at a point I walked to my husbands table and that the room was spinning. I remember sitting with my head on the table because I was too dizzy to lift it up. I remember that my a team was texting me in our group chat and that I was telling them I was drunk and sick and had a million typos. I remember overhearing someone say that sandi was in the bathroom puking, and I remember ceselie seeing me and asking if I had the spins. Ashlee texted and said that I needed to go throw up. I looked up and saw sandi standing across the table looking like shit, and so I knew the bathroom was clear for me to go puke. I remember hobbling to the bathroom and making myself puke a few times. I remember walking out and opening the door to ceselie there asking if I was okay. I said I didn't know and she put her arm around me and walked me back to the table. I cant actually remember anything that came next at the wedding. I don't remember saying goodbye to anyone. I remember being in the car and falling asleep right after. I honestly feel guilty and like a shit friend. I know that people are supposed to be happy and drink and dance at weddings, but I didn't mean to get trashed. My husband said he didn't realize just how drunk I was, and I don't remember the majority of the wedding. He said I didn't do anything embarrassing at least, but I just hate that I don't remember and I feel bad for it.

#wedding

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artificialqueens · 7 years

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saint in the city ch.2 (katlaska) - comeapart

a/n: angst angst angst and also smut. i write the blues so you don’t have to. i should’ve specified before that alaska is a orthopaedic clinical nurse specialist and katya is the head (trauma) surgeon. it’s becoming more increasingly clear that my interests in both drag queens and medicine are clashing. (ch.1 here)

If Alaska had to rank her ideas from the smartest to the stupidest, this was a solid eight. But realistically, changing her scrubs to reveal more cleavage wasn’t that bad. Changing her bra might’ve been, but she had to compensate. If she didn’t have long blonde hair and eyebrows arched to the heavens, people pointed out the androgyny that stayed in her features and form. Not that there was anything wrong with that, but years of public school bullying and the unfortunate term long phase where she only wore fishing boots and boy clothes didn’t exactly give her confidence.

She knocked twice. The fact that she had put thought into it was almost embarrassing, but she was always embarrassing. Having a crush just made it more obvious. She let herself in quietly, smiling and waving her hand as she looked over. Katya was sat alone behind her desk, a cling-film wrapped sandwich balanced carefully on a binder and a paper cup that was now empty balanced on the edge, with files lining the small space between her and her computer. Alaska probably stopped breathing for a second there.

“Yes?” Katya hummed, not even bothering to look up from the notes she was making. Even in the simplest of conversation, she had an accent. Alaska was a sucker for accents, and Russian was one of the prettiest languages she could imagine, if she was the kind of person with enough concentration to actually learn a language and not just get into it because it sounded hot in that one foreign porn Willam had sent her. Actually, the more she thought about it, the more she suspected Willam had seen Katya earlier. The cup matched the one Willam had brought her when she came to collect the theatre appointments, and it wasn’t from the same floor they were on either.

“Hi, Katya.”

“Oh,” she said, head still tilted down to focus on her paperwork, “Hello.” She was still frowning slightly, a crease showing between her eyebrows, which Alaska very carefully chose to believe was a reaction to her work and not to her presence. She could’ve missed it at a different angle, with her fringe carefully covering it.

“I have referrals for you,” Alaska said quietly, handing over the two files. “Spine and a leg. Willam said she wanted you to have it. The spine is Scout Jefferson. She’s a sixteen-year old girl with adolescent scoliosis, with a history of hand numbness, intermittent pyrexia and weight loss of ten pounds. The MRI revealed that her spine has been getting worse, and over the span of two months, it’s had an increased curve. I- well, my team and I - think that she’s a candidate for surgery.”

“Sixteen… Are you sure?” Katya asked, opening the file up and deciding to completely ignore the other that she had left on the desk. Somehow, Alaska could imagine that Willam would end up with that case later.

Alaska kept her smile, even though she knew that Katya was doubting her ability to judge. She liked Katya a lot, but she did wish that she hadn’t picked up the habit of implying that she rushed into things. She knew what she had to do. She wouldn’t have gotten her job on levels of incompetence. “I’m sure,” she nodded, watching as Katya put the file to the side and looked up at her properly for the first time all day.

“Okay. I’ll give her details to my secretary.”

“Thank you,” Alaska said carefully, standing up. At the doorway she paused for a moment, biting her lip and taking another shot in the dark, “I don’t know if you want to, but on Friday, Willam and Courtney and I are going to see the Harry Potter movie, and if you wanted to, or if you like, uh, liked-”

“I don’t care about Harry Potter,” Katya said, looking back down at the files on her desk. Alaska hated how she was completely unreadable, and she wished that she could master that expression too. She was too expressive, and she cared too much. She could feel her face fall, and that made her even more self conscious. Ever since Sharon, she had cared a little too much about things that nobody else noticed. She was embarrassing.

“Okay,” she murmured, letting herself out of the room. “Bye, Katya.”

By Friday, Alaska realised with a sense of survival and pride in her around half past seven that she was nearly done. She was overworked, but the four days off to follow would give her a second to recover. It didn’t even matter that she was on call for two of the days, because the idea of her bed was more than enough to keep her going. She had to stop wearing heels to work, because it killed her back. She got the discharges complete, dropping them off at Bianca’s desk, and snuck out of the back before anyone could stop her and ask her to do something, secretly thankful that Bianca wasn’t hovering with a last minute admission to process. Alaska was barely awake enough to actually manage. The amount of hours she had clocked up over the week were more than enough to cover the desperate need for a shopping trip at somewhere fancy and expensive over the weekend, and she knew that she would be able to get Willam to come with.

She checked her phone on her way out. It was 8:11, which felt early. She normally left around 9 or 10, sometimes later if needed. She wasn’t going to get in trouble for leaving, but she still managed to feel perpetual anxiety as she walked across the car park, scared that Bianca was going to track her down and tell her to come back. It wasn’t until she was halfway home until she actually let herself breathe, stretching out and turning the heat up in her shitty car. She wasn’t on call, and unless there was a genuine emergency, she was free until Wednesday eight AM.

She decided against stopping on her way back to get fresh food, making a mental note to text Willam and Courtney and guilt one of them into getting the groceries. She would just stop at the gas station on her way home, buy a jumbo pack of Cheetos, and feel a ridiculous amount of self pity as she ate them all in her bed. At the checkout, she picked up a bottle of fancy wine that she couldn’t pronounce the name of and a pack of menthols. The thought of being able to sleep for a whole four days straight was amazing, even if she’d managed to get scheduled for the entire weekend next week.

Once she was back, she dumped her things in her room and went to check the other rooms. Courtney and Willam were still at work, probably busy with work or finding somewhere to make out. She texted Willam with ‘guess where i am bitch’ in order to properly gloat. She put on Cyndi Lauper as loud as she could get away with at quarter to nine, stripping down to her underwear and deciding to shower. Willam wouldn’t be back until at least midnight, and Courtney was too nice to leave Willam alone at work, so she would pick up whatever hours she needed to stay with her.

When Alaska had first moved out to New York, she had come out and gone to college, living in shitty half-student accommodation that had managed to stay with her the entire way through med school. Her next apartment hadn’t been much better, with thinner walls and cheaper rent, and the third had been shared with Sharon, which was a change that she had never really been able to get used to. She was earning more than enough to live alone, in a nice place as well, but after she had lived with Sharon, she wasn’t able to switch back to being alone. Especially after the situation that relationship had left her with, with Courtney forcing her into bed rest to heal her wounds. It only made sense that she moved in as a third wheel, and saved all of them a lot of money. The best part about the shared apartment was that she only knew what Willam and Courtney sounded like having sex, and none of her other neighbours.

She changed into clean underwear once she was done in the shower, letting her hair fall to her back and not bothering to brush out the messy ringlets that were now showing through as she moved to the couch. She flicked through the endless channels that Willam paid for, settling on an episode of Scrubs. Courtney loved to poke fun at her for her choice in TV, because it was ridiculous that she worked full time at a hospital and then got home to watch shows about hospitals, but Alaska thought it was hilarious, and that JD was cute. She wanted Turk and JD to date, but she had seen it through hundreds of times, and knew that it wasn’t a realistic expectation. When people died, they played a sad song and then the credits rolled, and it was a nice change to hearing how things were going down in the hospital morgue from one of Courtney’s friends. Besides, Dr Cox was awesome, and no matter what Willam and Courtney said, she didn’t remind Alaska of anyone and they were dirty liars.

She stayed up a lot later than she had actually planned to, considering she had been ready to crash at any given moment a few hours ago. It was nearly one am when the doorbell rang, and Alaska nearly dropped the half-empty packet of Cheetos down herself. Willam hadn’t given her the warning text, so it couldn’t have been her roommates, and besides, they both had keys. Sometimes Sharon would try to come over, but after the very loud fight she had had with Courtney, Alaska was pretty sure that it wasn’t her. The doorbell rang again, with more urgency, before someone was actually knocking on her door.

She stood up, pulling on one of Willam’s hoodies and zipping it up to give herself some dignity before going to answer the door. She wished she had actually put on clothes after showering, but she liked to air dry. She was just going to send whoever it was away, anyway, unless it was someone who actually lived with her. She readjusted her bra a little, making sure the sheer fabric actually covered her up before leaning down and looking through the peephole. She nearly fell backwards trying to step back, shocked. Katya Zamolodchikova was outside of her door, her arms folded tightly over her chest and her nails tapping against her arm as she waited.

Alaska sighed, realising that her look was probably the least subtle thing possible before opening the door. “Hieee,” she hummed, watching as Katya turned to look at her. Alaska looked her up and down twice before raising a brow, biting her lip. Katya looked as if she hadn’t slept in a week, with her hair sticking up in every direction possible, and her eyes dark and lined with heavy bags. “Shit… are you okay?”

Katya nodded, clearly ignoring the actual question as she looked down at Alaska, trying not to stare at her impossibly long legs and the fact that she wasn’t wearing pants. The hoodie that she had put on barely covered the top of her thighs, and the panties that she was wearing barely managed to cover her dignity. Her parents would probably have killed her if they knew their perfect daughter had turned out like this. “Can I come in?” She asked, looking up at Alaska properly for the first time in what must’ve been years.

Alaska stepped aside, and Katya came in with the same jagged movements that showed in her look, her whole person lacking composure. It was like she wasn’t sure how to react to Alaska, like there was fear, or maybe regret. Alaska had never seen this side of Katya, with every single move she had ever seen calculated and cool and incredibly controlled. She looked down, and Katya’s hands were shaking, completely different to what she knew from the surgeon.

“Girl… What happened?” Alaska asked quietly, shutting the door behind them and looking up at her. Katya turned around, but didn’t respond. Instead, she moved forward, taking her hips, pushing Alaska tight up against the door and kissed her.

Alaska tried not to overreact. She really did. Out of all the possible explanations she could’ve thought of for Katya appearing at her door, this wasn’t the one she expected. At this point, she had completely accepted that Katya wasn’t into her, and the fantasy of her actually realising that she was head over heels for Alaska was completely unrealistic. Katya’s mouth was hot and hard and desperate and demanding, and she closed her hands around Alaska’s hips and dug her nails in deep.

“Hey- hey,” Alaska breathed, pulling back and trying to look at her, breaking away for a moment, “What are you-”

“Don’t,” Katya said, her accent thick as she kissed her again, nipping at her bottom lip. “C’mon, you want this. Don’t you want this?” The last was more of an agreement, Alaska kissing back in response, because yes, yeah, she had definitely wanted this. She had wanted this for years, since she had first seen Katya, and she was helpless under her touch. Katya was rocking her hips up against Alaska, and Alaska was fully prepared to wake up at any given moment. This was the stuff her wet dreams were made of. Alaska let out a little noise, moving her hand up to cup Katya’s face and into her hair, and Katya made what could only be described as a growling sound from her throat, tightening her fingers in the soft fabric of Willam’s hoodie, moving to pull the zip down and helping her shrug it off without once breaking the kiss.

“Where’s your bedroom?” Katya breathed, and Alaska had to stop herself from freaking out, because they were really actually definitely doing this, then. Alaska had sort of thought that if one day this ever happened, it would be after a stupid cheesy date with Katya where they talked shit on the food and tipped way too much, and it would actually be at Katya’s because Willam and Courtney lived with Alaska and that was too risky normally to bring back trade. But at the same time, she had been waiting and wanting for four years, and she didn’t really have any idea how that kind of relationship would’ve worked out considering. She pushed away from the wall, fumbling with the buttons on Katya’s work shirt and then at her pants, leading her through to her bedroom and suddenly hoping that she hadn’t left scrubs everywhere. She had a habit of trashing the place when she wasn’t expecting company.

She caught Alaska by surprise when she pushed her pants down, their mouths still caught together in a kiss, with Alaska’s arms pulled tightly around her neck, as close as she could get. It was another shock to step forward and realise that Katya had discarded her own underwear somewhere along the line, with nothing between them except Alaska’s stupid sheer bralette and a couple of ugly block bracelets that she had put on to fiddle with while she watched TV.

In the bedroom, they stood and kissed for a while, Katya’s hands firm on Alaska’s hips and dragging her in as closely as she could. Then Katya pulled away ever so slightly, mumbling into Alaska’s mouth, “I want to fuck you,” her breath hot against Alaska’s mouth. Alaska turned her head slightly, soft moans already threatening their way out as she gasped, letting Katya suck hot kisses down the line of her throat, not hard enough. Katya was too gentle, treating her like a princess, and it wasn’t fair.

“Alaska,” Katya mumbled, kissing her collarbone gently as she looked up, bringing Alaska back to the moment.

“Yeah, uh, yeah. Of course,” Alaska said, trying to regain some composure as she looked down, catching Katya’s smile and biting her lip. That must’ve been the first time she had actually seen any real emotion on her face, something real and something that wasn’t icy. And it was all for Alaska, at least for a night.

Alaska twisted and moved under Katya’s touch, pressing up against Katya’s fingers and ah, fuck, Katya was good at this. She was well practised, and it made Alaska remember that she was one of many. This was only special to her. Alaska wrapped one arm up around Katya’s back, pressing her hand against the skin between her shoulder blades, and lifted her head up again to look up at her with heavy lids, straining until Katya leaned down and kissed her again, leaning down against her and almost crushing her as she moved.

“Hey, Katya-” Alaska breathed out, because Katya wouldn’t fucking stop, desperate and determined to find every corner of Alaska’s mouth with her own. “Katya, baby, are you al-”

“I’m fine,” Katya nearly hissed, moving back and readjusting her position before pulling Alaska in closer and starting to move her hand at the perfect angle with the same defined desperation, making Alaska moan out again and again beneath her. Alaska hadn’t realised, but Katya was getting herself off too, hand moving and synchronised with what she was doing to Alaska, and her breathing was starting to get ragged too. Before she could even offer to try and help, Katya’s hips were jerking forward and she slumped forward into Alaska’s shoulder, mumbling curse words in a language that Alaska couldn’t recognise against her skin.

Alaska barely had time to feel disappointed, though, as Katya was moving down and kissing her in all the right places on her way, slicking her tongue over the wetness, and that was it, Alaska was long gone. She arched her back and let out a soft whine of something incoherent, which was comforting as she was pretty sure that anything she could have possibly said would not have been appropriate for first time sex, relaxing her whole body back into the mattress. Katya pulled away, clearly not too worried with the situation as she swallowed, looking up at Alaska and smiling again. She was going to have to remember that for when Katya inevitably started ignoring her again, treating her as she always had.

Alaska reached out to try and pet the side of her face, but missed, instead clumsily patting at her neck and mumbling out a “Sorry,” before putting her hand back over her stomach carefully, suddenly aware of how naked she actually was. She hadn’t even taken her bra off, but it hid nothing, so it was almost like she wasn’t even wearing a bra.

Katya shook her head. “It’s okay,” she said, moving up on the bed again and lying down next to Alaska. It felt like something out of a dream. Katya was lying in Alaska’s bed, stretched out and beautiful and everything she had ever imagined from the woman beside her. Alaska reached out absently, running her nail along the bumps in Katya’s spine without paying any attention, bringing out a slight shiver and the question, “Can I stay here tonight?”

“Um,” Alaska said, ever so slightly confused. Katya had never once implied that she would ever want to spend time with her outside of necessary bounds. “Of course.”

They both moved, levering themselves under the blankets and stretching as Alaska turned off the light. Katya laid on her stomach, face turned so that she wasn’t looking at Alaska, but she didn’t complain when Alaska moved and curled up against her side, nuzzling as closely as possible into her forearm. She hadn’t pegged Katya as the kind to pass out immediately after sex, but she didn’t really mind. She had Katya Zamolodchikova naked and asleep in her bed, with her body still mildly aroused and her mouth still pleasantly tingling. They could find time to talk in the morning.

She was almost asleep too when her phone rang, inside her work trousers where she had left them across the room after getting home. For a moment, she didn’t move, before realising that something could’ve happened. The awful thing about working at a hospital was that human error was all too real, and that any patient she had could get seriously injured, could be taken in after an accident and end up in critical, or worse. She forced herself up out of the bed, leaving Katya asleep in her bed as she took the phone and walked into the bathroom, flipping the switch so that she could stare at herself in the mirror while she talked.

The phone flashed up as Willam, and she blinked twice before actually registering it. Willam never called with hospital business, considering they lived together, but it was nearly two in the morning and Alaska couldn’t think of any other reason as to why she was calling. She picked up and answered, keeping her voice low and looking back out at the bed. Katya still hadn’t even so much as twitched.

“Lasky, girl, have you seen Katya?” Willam asked, worry lacing her voice. Willam, who never spoke fast, was actually rushing her words. Alaska could feel her throat tighten.

“Um.” Alaska mumbled, looking at the bed again and pulling her arm over her body, trying to cover up. “Why?”

“The- Fuck, I’m definitely not supposed to tell you this, but who gives a shit? We live together, you’d find out somehow.” Willam started, and Alaska felt a little relief at the fact she still had some of her basic qualities to her. “The ER was short tonight, so they sent Katya down, and there was this girl with a case of swine flu. She was like, four years old, but her parents didn’t realise what had happened until it was late. The- Katya was there almost immediately, but the girl died.”

Alaska could feel the room getting colder around her, and she suddenly felt ill. “Fuck.”

“Yeah,” Willam sighed. She sounded tired, and Alaska could imagine. She’d been sent to the ER before, and some of the things she had experienced had changed her as a person. She could almost see Willam, pushing the ridiculous bouncy hair back and pacing around the room. “I guess Katya isn’t used to seeing death outside of surgery, I, uh, I guess? She took off quickly. I’m worried she’s going to have done something stupid, Trixie can’t even get hold of her.”

Too late, Alaska thought miserably, staring down at the sink. She wanted to wash her hands, or maybe drown herself. “I’m- I don’t, I’m sure she’s fine. She wouldn’t come to me anyway.” It wasn’t like she could admit this anyway, not for a few days. She would need a lot of wine and Courtney to talk her through what happened, and exactly why it wasn’t worth killing herself over.

“Yeah, I know. We’re all just worried. Sorry, baby, go back to sleep. Me and Court probably won’t be home till early,” Willam sighed.

“Bye,” Alaska mumbled, standing motionlessly for a moment as she watched Katya move in her sleep, tossing her head restlessly for a moment. A moment earlier, and this would’ve been amazing. Everything would have been okay, and Katya wouldn’t have still been the ultimate problem area in the complex life of Alaska Thunder.

After what felt like a lifetime, she crossed back into her bedroom and found new underwear, putting it on and wincing ever so slightly before she climbed back into the bed. Katya was stirring in her sleep, reaching around and mumbling things in hushed Russian. If nursing had taught Alaska anything, it was that warmth was good for shock, and she moved in close to her and let her adjust as she liked. She could deal with her own guilt later. For now, she had to think of Katya, and pretend that she had never gotten the call.

#alaska thunderfuck #katya zamolodchikova #willam belli #courtney act #katlaska #witney #hospital au #tw hospitals #smut #comeapart #rpdr fanfiction #lesbian au #saint in the city #submission

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sophiakountakis · 4 years

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I have contemplated for many years if I should ever speak about this. I do not like to show my personal life, or experiences that I have been through. To be honest, I still feel embarrassed to talk about this. I’m not afraid of what people will think. I just feel like compared to other people’s’ life struggles, mine was still fixable? so I shouldn’t complain or tell my story as if I have suffered throughout my life. But I have suffered and it has taken me years to realized that I did and that I lived through this traumatic experience.

Please take the time to read my story. It is very long and extensive, but it would mean so much to me. This isn’t a common topic people speak about and sometimes I feel like it is brushed aside compared to other diseases. I am also guilty of this. If you think about it, this disease, if you want to call it that, is very agonizing, even dangerous. I also realize that many people do not know anything about this disease at all. There are many misconceptions and I don’t blame anyone. I, too, was so unaware until it happened to me. I hope to share my experience, as anyone who fights this disease is different, and I hope to provide some awareness. I do not intend for this to scare people. This is what I went through.

This is my story with idiopathic scoliosis.

I will take you guys through the entire timeline. I am talking about this now because June is considered to be Scoliosis Awareness Month and December 22, 2020 will mark 10 years living with my correction surgery. Writing this was very emotional for me and I have been editing this and gathering my thoughts for over a month. There is something very liberating in writing about past trauma, but it also brings up a lot of suppressed feelings that I really did not want to go through again.

The Diagnosis

It was a hot day in August 2009, about 5PM in the afternoon and I was sitting in the waiting room for the doctor’s office. I was entering my freshman year in high school and all students were required to receive a physical before playing any sports or participate in P.E. (gym). I actually remember the exact outfit I wore, a blue Aeropostale shirt with black gym shorts — it’s Texas, it was very hot outside. My mother stayed in the car as this was supposed to be a quick 10 minute check-up.

Finally, my name was called. The check-up was going smoothly. I was asked to do the scoliosis test, where you stand up and they check the alignment in your hips and shoulders to make sure they are even. Then, you bend over to touch your toes, so they can check your spine curvature under your shirt. The nurse, who was a schoolmate’s mom, keep in mind I lived in a small town and everyone at the school was involved, including the doctor’s kids, made me stand back up and said she would be right back. She came back into the room with another nurse and they sat me down on the table and checked me again. She asked me if I had been examined for scoliosis. I said no, only the test once a year in gym class where you bend over and I always passed that one, maybe because I have long arms and was decently flexible. Who knows if there is any adequacy to that test. I would say no.

She told me to call my mom to come inside. I called her and was starting to get very nervous. I had no idea what she was talking about. I heard about scoliosis, but never in my life I thought I would have that. It couldn’t be true. My mom entered the room and the nurses told her the diagnosis and then they recommended that I should see a specialist. They offered to send me to a doctor in town, but my mom was not going to do that yet. We got in the car and headed home. I can’t really remember what was going on after. I remember my dad finding out once he got home from work that day and they both looked at my back again. He said that he remembered I was complaining about some back pain in the past year and he would kindly rub my back so that I would feel better. I thought back on it and agreed, but couldn’t believe this was why.

My parents decided that they would take me to Houston, over an hour away from my town, to see a spinal specialist. My mom, who has had a knee replacement, did not trust the doctors in our town and only wanted me to see someone who was at the top of their field. The doctor that did my mom’s knee replacement, some years before, had referred us to his colleague, Dr. Francis. We had an appointment in the next two weeks.

The day came for the appointment and my family and I traveled to Houston. We did not know what to expect, we hoped this opinion would be different. It was a very long appointment. I had many x-rays. They were curious about my growth spurts and how far along I was with my development. I was 15 years old and oddly tall and lanky. I looked like I could have reached my end height. Most women develop and stop growing around 16 to 18 years old. It obviously depends on the person, but that is the typical age group. For men, it is much later, 20 to 23 years old, again it depends.

The x-rays came back and Dr. Francis showed us images on an x-ray screen and basically explained to us very carefully and empathically that I indeed did have scoliosis. It was not just a small curve. It was 46 degrees on the thoracic and about 12 degrees on the lumbar, a reverse S-curve.

When a patient has a degree exceeding 10 degrees in the spine, it is usually diagnosed as scoliosis. Curves less than 10 degrees are typically normal and can correct themselves later on depending on the growth of that patient. When the curve typically exceeds 40 degrees, surgery is needed. All humans have a natural curve to their spine, some claim this to be scoliosis, however this is absolutely false. It is perfectly normal, remember 10 degrees or more is when you need to start worrying.

I obviously had passed that point and Dr. Francis stated that I would need surgery. He continued to explain the process and information for the next steps to consider when this would happen. I could not remember a single thing after the word surgery. I blacked out and starting crying so much. I was causing a scene. I couldn’t believe it. I looked up at my parents and sister and they were crying too, which made me cry more. Dr. Francis tried his best to calm us down and reassure that it was going to work out and he sees patients way worse than me. He told me that I was lucky because I could have the surgery and that most patients are past the point of their growth and cannot have the surgery at all, ever.

To have the surgery, a patient needs to be very young because the bones in the body typically harden after puberty and once the bones harden they become very difficult to move. As stated before, the curve has to be over 40 degrees. Patients with degrees less than 40 are given a brace and physical therapy for them to moderate their scoliosis and keep it from growing and twisting. Once you are too old and the curve is too extreme, you basically live your life in pain. These people can suffer grave complications throughout their life, including lung collapse from the spine twisting, organ failure, punctured organs, etc, or even early death.

I, fortunately, was still young enough for the surgery to be plausible and successful. Unfortunately, my curve was so large and I had to have the surgery. Had I known before, I could have slowed the growth of the curve and maybe not have the surgery at all. But the only question for me was, when? When did I first start having symptoms and start progressing this curve at this rate of extremity? I was so tall and lanky. There were times in middle school and later in high school where I grew six inches in one year and did four more inches the next year.

My mom questioned whether or not scoliosis was hereditary as she remembered her mom, my grandma, had a small curve in her upper spine. My aunt, her sister, had a small curve as well. Dr. Francis mentioned that a curve that small wouldn’t carry genes far enough for me to have full-blown scoliosis, especially since my mom had no curve. My dad’s side had no trace of it either. Then, my parents asked if it was because I was so tall for my age and they told him I grew so much in one year. Maybe my body couldn’t keep up with my bones? Possibly.

There are many types of scoliosis:

These can occur at different stages in a human’s life.

Congenital Scoliosis: where a person is born with scoliosis because the spine does not develop in the womb.

Early Onset Scoliosis: the curve appears in children before puberty or age 10.

Adolescent Idiopathic Scoliosis: a change in shape of the spine when a child is growing. The spine curves and twists at the same time.

Degenerative Scoliosis: occurs in adults, sometimes the bones get weaker as a person ages.

Neuromuscular Scoliosis: caused by a neurological muscular condition.

Scheuermann’s Kyphosis (Hunchback Syndrome): where the front sections of vertebrae grow more slowly than the back sections during childhood causing a forward curvature.

Syndromic Scoliosis: scoliosis develops as part of a syndrome.

I was told that I have idiopathic scoliosis. Idiopathic means that there is no known cause or origin. Sometimes it runs in families and sometimes there is no trace. It is the most common diagnosis and affects both boys and girls, but it is eight times more common in girls. This made sense since I grew so fast in such a short amount of time. The symptoms, although I never experienced any until I was diagnosed, can vary from person to person depending on the degree of curvature. Common symptoms are shortness of breath during activity, back pain, and a bulge in the back from the rib cage.

My x-ray not only showed my double curve, but highlighted the fact that my spine was also twisting. My left rib cage was protruding outward and forward and my right rib cage was protruding backward, clockwise. My ribs were becoming squished together on the right where it was protruding back. I hadn’t even noticed before, but after, it was all that I could think about.

Cut back to the appointment – we left upset, scared, and somewhat hopeful. I remember riding back from Houston, the sun was setting, and I was still shedding tears. I just could not believe it. I recalled a memory I had the year before, where they were doing the test on us in 8th grade, middle school. I remember doing the test and being like, “Why am I doing this? I will never have scoliosis. This is whatever. It won’t happen to me.” That thought haunted me. I felt like it was karma. Here I am, a year later, crying in the car because I have severe scoliosis. I felt terrible, and oddly guilty? Like I did something wrong when I thought that and now I am receiving punishment. It sounds so irrational, but that is how my mind works. I basically blamed myself.

The Next Steps

Two weeks later, I came back for an appointment to fit me for a brace. The final decision was that while I was coming close to ending my growth, I would wear a brace in the meantime to see if I would grow more within the next year. Dr. Francis was concerned that I could grow more within a year, comparing my height to my parents, who are 6’2″ and 5’10”,and he did not want to stunt my growth. Once you have surgery, the spine does not grow anymore. By the next year, if my body was not growing, then I would have the surgery.

There are some variations of braces that are used to treat/maintain scoliosis. I wore this one.

image source unknown.

It had an opening on the side of my body where my ribs needed to be pushed back into place, or straightened. The brace came down over my glutes and up to under my bra cups. I wore the brace for 16 hours a day and was allowed 8 hours off. The time depends on the severity of the curve and the amount of time needed to keep my curve from progressing.

I was so embarrassed to wear this. The first few months wearing it were so painful. My ribs were sore, I couldn’t bend down in it, twist, arch my back, nothing. I did not want to wear this to school at all. I was so afraid of being made fun of for having a back brace. I told absolutely no one in my school that I was diagnosed with scoliosis. I knew how the people at my school were, if they would make fun of someone for something as small as having hair on their arms as a girl (yes, they did) they would definitely make fun of a back brace. I did not trust anyone. I think maybe one of my very, very close friends suspected it later in the year, but she was kind enough to let me not know that she knew. I never wore the brace at school. I was too paranoid someone would hug me or poke me (my school was small and very close and it was 2009/2010, people at school were allowed to hug each other then). I also did not want to answer so many questions from people and did not want to be looked at differently, like something was wrong with my body, like I was not perfect. This later turned into a bizarre body dysmorphia. I will explain that in the future maybe.

At the time, I was on the drill team and loved dancing, but that had to end very quickly. I still was allowed to play sports and continued activities in P.E. and even played softball, although I mostly sat benched. I continued to hide the fact that I was going through something fairly distressing as my body would ache every single day. As a teenager, you do not expect to go through something life changing or severe. My heart aches for every single young person/child that has to go through some physical/mental illness, or disease. It is so difficult to understand your feelings and feel validated in what you are going through. I did not understand most of my feelings and thoughts until years later after analyzing my experience. I went through trauma and I still live with some PTSD from this. This ended up affecting my everyday life and how I perceived myself. I was 15 years old. There is so much pressure in high school to look and be perfect and I felt that deeply. No matter what anyone said, I felt the pressure to look a certain way and with this disease there was no way I would be the same as everyone else. That was a blessing in disguise because now, almost 10 years later, I am so happy that I am different, or at least look like it from the back.

It seems hilarious because if you look at me now you would have never known or guessed that I have scoliosis! Only when I am in a bathing suit and you just so happen to look at my back, which does not happen very often.

The Surgery

Fall 2010 came around and I went to my quarterly check-up. The doctor requested more x-rays and a brace adjustment to tighten my back straighter. He mentioned that my growing will most likely subside in the next year and was afraid he would lose the time where my bones would be malleable enough to move around. The curve was already so big and I was so tall and older than most of his young patients. My mom and Dr. Francis agreed to have my surgery over Christmas 2010. I thought, this is too fast I cannot process this. Surgery? Am I really going to go through this?

The doctor went over the surgery procedure with us and mentioned that it would include a bar and a few screws into my spine, but he did not really know for sure until I was in surgery. They tell you this to prepare you for what they will do, but also won’t guarantee anything because something else could happen during surgery and might require another route.

No amount of preparation the doctor gave me was actually going to mentally assure me what was going to happen post-surgery. But I had a lot of faith in them and tried not to focus on it too much. Most of the feedback was positive and assuring. Little did I know it would be different for me.

I was put into physical therapy a few months before to tighten my core and back muscles so I could use them post-surgery to help me hold up my back. Whether or not this was helpful, I am not sure, but I did not notice anything specific. However, I did not mind the therapy at the time because I felt like I was helping myself.

December rolled around and I was on Christmas break. I left my school thinking that I would see my friends again in January with a new back and no one would ever know what happened, so I thought.

The downtime in the hospital was one week, so my parents and sister decided to rent a hotel for a week really close to the hospital in Houston. The day before my surgery we checked into the hotel, which was near the Galleria mall, and they let me run around the mall. My last moments free to move around sans metal spine.

The next morning, we woke up at 4 AM and I bathed in this antiseptic solution. It was brown and had an odd smell, not what I wanted to do at 4 in the morning. My surgery was scheduled at 7 AM and we were told it would be a 7 to 8 hour procedure. I couldn’t imagine being unconscious for that long. Before I knew it I was whisked away to the prep room so I could get ready for surgery. I remember the room was freezing, I was shivering so hard my teeth were clacking. The kind nurses assured me everything was going to be alright and I had this strange moment where I said a silent prayer in my head. I am by no means super religious, let’s say uber-laxed. I felt so bizarre doing it, but I was so scared. At the same time, I was so out of it that I couldn’t process anything that was happening. They put the anesthesia on and I fell asleep.

During this time, my parents and sister were in the waiting room the entire surgery. I am not sure what they did and I don’t think I ever asked.

I cannot remember the next few days after I woke up. All I know is that I woke up to what seemed like late afternoon in a hospital room, my family sitting around me watching tv. I was full of pain medication and felt this sharp pain coming from my left hip. As I recall, I don’t remember back surgery including hip pain. I was told later that my surgery was extremely difficult. When my parents first saw me, still unconscious, they said my face was very swollen from laying down on my face during surgery. My mom mentioned that when Dr. Francis came out of the surgical room to notify them, he looked exhausted and was wet from sweating so much. I lost a lot of blood. My bones were much more stiff than anticipated and I needed a spinal fusion.

A spinal fusion is when two or more pieces of vertebrae are fused together with a piece of bone and/or metal. The bone is extracted from a large mass, typically the pelvis – why my hip was hurting so much. They did not know I would need a spinal fusion until I was already being operated on. The hardware required for my surgery also changed, I had two bars in my spine, each lining either side of my vertebrae, and about 18 screws, each 1.5 to 2 inches long. The screws hold the bars to my spine. The bars ensure my spine stays put and the fusion makes sure the spine does not grow anymore. Is my spine perfectly straight up and down now? No, as I stated earlier, my curve was very large and my bones were stiffer than expected so they could only correct it about 90% and then basically fused my spine together so the curve does not progress anymore. Dr. Francis also attempted to re-twist my rib cage a bit so my back does not have a bulge. He never fused my lower back. My bars only go through 3/4 of my spine. I am still able to move my lower back far enough to have some freedom, not too much to do anything crazy, but enough to bend down and touch my toes.

Here are my post-surgery X-rays.

Back

Side

The amount of pain I endured the next few days was unimaginable. I truly cannot describe how this felt. I can only compare it to getting run over by a car and having your back destroyed. The first day out of surgery they make you walk with a walker of course, and let me tell you – I WAS NOT going to do it. I screamed and cried. These poor nurses did not like me at all. I don’t blame them, I was unbearable.

But little by little, I ended up walking because it was absolutely necessary that I start training my body to do the most simplest motion – walking. Learning to walk again was the most unnatural thing I have ever experienced. I sympathize for anyone who has had to do it. It is so painful. I did not realize how much you needed your back to do everything! Without your back, you literally cannot do anything.

I also noticed I was slightly taller than before surgery. Apparently I grew an inch from the correction. I was 5’9″ now and 100 pounds. I lost so much weight from surgery, about 15 pounds. I was always a lanky, skinny kid. Some would complain that I was too skinny, but it was not like I was starving myself. Later, I would come to know that I had a hormone deficiency, but didn’t know that at this time and it was very shocking to see me. I was so fragile looking and with a new back, as I call it, I looked even more lanky and awkward.

I spent Christmas in the hospital with my family which was not cool, but I was grateful I was alive. A few gross things happened before leaving the hospital. I received a blood transfusion a few days before I was discharged because I lost so much blood during surgery I really needed to be ‘refurbished,’ for lack of better words haha. That was an interesting procedure. While I was unconscious during surgery, they planted a stint in my chest near my heart. When I woke up I was so confused about it protruding out of my chest. To give me blood, they hooked up a blood bag to the stint and let it funnel through the small tube into my main artery. I could feel the blood rushing through my heart. It was gross. Another gross thing was that I had two drains plugged into my back to drain any fluid from the surgery, mainly blood and other liquids. This had to be changed every day and it was so disgusting. I cannot believe I saw that coming out of me. Insert barf emoji here. And my last gross experience was having a suppository because my intestines were so backed up. I was not walking very much and the doctor had to slightly move around some of my intestinal track to adjust my back. Mega gross.

The day finally came for me to be discharged from the hospital. I spent seven days in that room completely lethargic. They told me recovery was usually six to eight weeks. I was given some pain medication and was sent home. I had to wear another brace, this time it was straight with no holes in it. It was mandatory for every single time I was in the car to protect my back in case anything bad happened while driving. Truthfully, I probably wore this thing twice. I was asked to make check up appointments and if I needed anything to call or come see the office.

The Recovery

The worst part of this experience was not having the surgery, it was recovering from it. I spent the next four months of my life in so much pain I wanted to die.

I was suppose to go back to school early January 2011 for my sophomore year of high school. That didn’t happen. My parents asked the school for me to skip for the next month to give me more time to adjust and heal. January went by in excruciating pain. February came around, went to my check up, begged and cried for more painkillers, and went home still in pain. I will say, the doctor that prescribes the pain medication, who is different from the surgeon, was very patient with me and gave me more than I probably needed. My mom, who very well knew kids shouldn’t have their medications by their beds every night, kept them in her room in a cabinet where I obviously couldn’t reach because I could barely walk. I was suppose to be off meds in February, but I continued taking them until March-ish.

I was on antibiotics for the first month, then morphine, hydrocodone, muscle relaxers, and maybe something else for pain. These were all spaced out and on a need-basis and my mom was careful with how much she gave me. I hated taking these medications, but I couldn’t function without them at all. I was a completely different person on these medications. I was depressed, cranky, I cried so much all the time, I was agitated, you couldn’t even speak to me without me getting upset. My parents did everything they could to make me feel better, get me on a routine, try to alleviate my pain. I blacked out most of this time. I cannot remember much, even just a few months after I fully recovered I couldn’t recall much at all. Maybe I blocked it all out. There is a study I read that says your mind sometimes responds to trauma by blocking it out as a coping mechanism.

I do remember a few things very clearly. Me, painfully trying to walk around the house with a walker. My aunt scrubbing my feet and giving me a pedicure because the pain meds dried out my body so much the skin on my feet and my body was peeling off. My dad waking me up every morning, giving me my medication and bringing me to the tv in the living room, feeding me french toast that he would take time out of his routine to make for me because he knew I liked it. My sister bringing me water every time I asked for it. My mom giving me showers once a week and trying to get all of the greasy oils out of my hair. Me sitting on an orthopedic chair every single day with a brown blanket my dad bought me so I would feel comfortable. I still own it and it recalls this exact memory.

I also remember hating my life. Maybe it was the pain medications making me so emotional. Maybe it was all the pain I felt for days, months, that would never go away. I remember laying down in bed after having one of my pain induced meltdowns, my mom came in to bring me an ice pack to put under me because my ribs were hurting so much. I kept crying and thinking to myself that I wish that I would just die because it hurts so much. I am not sure if I actually said that to her or my parents in general. But they could tell I was seriously depressed. My parents were never the people to give pity to me or my sister. They always wanted us to stay strong, keep going, and get through things, but when you have a child in pain for so long, I can’t imagine how awful they might have felt to see me like this. On top of this pain, I just felt so helpless and worthless this entire time. I couldn’t do anything I wanted, I couldn’t help myself, not even get up and get a glass of water by myself. I had to rely on someone for every single thing I needed. It was so frustrating for me and I couldn’t stand it.

I remember my sister telling me that she and my mom went to the store one day and she told her that she was so worried that I would never recover, that I had to endure the pain she had to endure when she had her knee replacement and suffered with her knee all her life. Scoliosis isn’t a one time deal. It carries with you until you die. I will pass away one day with this metal in back. This doesn’t get taken out. The surgery technically isn’t a “fix”, it is band aid to stop the progression. The pain doesn’t miraculously disappear. It is a work in progress.

Even my father was worried, he saw that I was so depressed and thought that I might not ever recover. My family had no idea what this surgery would bring me in the future. None of us even knew this was a thing. None of us thought it would happen to us. But my mom told me something very important, something she had to learn at a very young age. Everyone in their life goes through something health-related at some point in their life. Whether you are young or old, you will go through something traumatic, whatever that trauma is, everyone goes through it.

I would always cry and say why is this happening to me? Why me? Why do I have to suffer like this? My father would tell me that this is a very hard time for me, but I am still lucky and will get through this. Some people go through much worse and they don’t come back from it. I have always thought, throughout my entire experience with this, that what I went through was very difficult, but I am still blessed, for lack of a better word. My family could get me a great doctor. My family could afford to take care of me. I had insurance. This disease wasn’t terminal for me. Even though this was terrible, I had so many instances were I could be happy and grateful that this was my ‘bad’ time in my life. Who knows, my life isn’t over yet, sometimes multiple issues occur. This was a very eye-opening time for me as a 15-16 year old. My reality bubble burst. I never thought in my entire life that I would experience unwarranted physical pain. It sounds so ridiculous, but really I thought that. Now I know, no one is spared from pain in their life and it happens to every single person.

During this time, I had a few friends visit me. It was March and I was able to walk more often. My school was notified since my parents were not sure how I would be able to return to my classes without needing help getting around. However, my school did not offer an option for me to catch up on missed classes. I had to finish my sophomore year of high school and my school would not help me. My parents personally asked a few teachers to send work home for me, via my friends, and I would return it to them at my own pace. A few teachers even came to my house to teach me in person and give me tests. These teachers were paid extra by my parents. I felt so embarrassed for them to see me like that, but I thanked every single teacher for coming out of their way to help me. I am forever grateful to them.

Another Surgery

I was 16 and by the way, I did not have a sweet 16 birthday party, it was spent at the doctor’s office. At this age, I hadn’t started my period, which is very unusual for a 16 year old. Remember, I was very skinny, boney, all my life and after surgery I was much thinner. I was 100 lbs at 5’9″ and as much as I ate, it would take months for me to gain any weight. My parents knew I ate, although I was very picky, and that I wasn’t starving myself. I was always teased for having chicken legs and always being told to ‘go home and eat some cake’. A kid even told me once that my arms were so thin they could snap my limbs. I’ve had disgusting comments said to me about my body by so many boys and girls. I never understood why people wanted to be so skinny, because all I wanted were curves. I never had that. I still barely have that HAHA. All bodies are different and I have accepted that. I still suffer with body dysmorphia because I ended up gaining weight. I can elaborate on my body journey, in a different post.

Anyways, I didn’t have a period, but I was starting to feel cramps. Like bad cramps. My mom assured me it was my menstrual cycle, not to worry, and just take aspirin. For some reason, I felt like something else was happening, but didn’t know exactly what – it was just wrong. It kept getting worse for the next two days. The third day a few friends, who found out about my surgery, decided to come over to my house during spring break and surprise me with a wellness basket. It was so sweet, I was surprised and very thankful that they would do that for me. At the same time, I was feeling almost worse. My pain tolerance must have been so high because somehow I got through two hours of visiting with my friends before I couldn’t take it anymore. I went to the bathroom to maybe see if something was actually happening with my period. I ended up keeling over on the toilet, completely unable to move. With all my strength, I got myself up and limped to my mom’s room and said that something else was wrong. I couldn’t do it anymore. I couldn’t stand up straight. I could only be bent over at 90 degrees.

My mom told my friends to go home and that I needed to go to the hospital. I’m sure that didn’t freak them out. I was in the ER and the nurse at the desk wouldn’t believe me that I was in pain. I was at the counter crying in so much pain not able to stand. I thought I was dying. The pain escalated so much that I could move at all. After making me wait for 30 minutes in an empty ER room, I was finally sent to the back to a jail cell room (where they put prisoners or criminals who are hurt) because the others were ‘full.’ I’m not here to trash ER rooms or nurses, they do a great deal for humans and society, but this is my experience and I’m going to be truthful, I was beyond upset. After 5 hours of testing and lay weeping in my jail cell, the doctors couldn’t figure out if I was suffering from an ovarian cyst or appendicitis. When asked when my last period was, which was never, the doctors accused my mom of starving me, not getting a period, then threatened to call CPS on her. Yes, this actually happened. So, they decided they would have to put me in surgery to really figure out what was going on before they could diagnose me. Around 10pm, I was in surgery.

I awoke to a hospital room, again. I was told my appendix ruptured as soon as the doctor’s started to operate on me. Right on time. I was cleaned up before an infection could start and my appendix was removed. There is not really a cause for appendicitis. It can be anything or nothing. It isn’t really needed anymore in the human body. I spent a week in the hospital, which is so much longer than the recovery time for appendicitis, because I wouldn’t eat the hospital food, it was disgusting. Yes, they kept me in the hospital to make sure that I would eat!!! This recovery was very painful as they blow up your stomach with air to operate and when you wake up your stomach hurts a lot, like severe gas pains. Eventually, I was released and had to adjust to being in pain again! Two drastic surgeries in less than three months. Crazy!

Making Progress

The end of March and beginning of April were still rough, but things were looking up. By the end of April, I was feeling better, moving around a lot more without my walker, able to bend down and get things for myself. My parents let me go back to school in May for a few weeks until the end of school. It was so bizarre returning to school, especially for such a short amount of time. They wanted me to finish my year, take my final exams in person and see my friends.

I remember my first day back was filled with so much gossip, information gets around my small school faster than wildfire. Apparently, many rumors were circulating about my disappearance. A few of them were funny. One was that I got a boob job. I KNOW RIGHT! To their surprise when I returned with a flat chest. Another rumor was that I was sent ‘back to my country in Afghanistan’. I’m not sure if I mentioned that I went to a very small, Catholic private school in a poor neighborhood that was filled with mostly white students, most who were from the countryside. If you looked even slightly different to them, they would joke about this stuff. I am white of Greek culture. This is was actually offensive to my culture and to the people of Afghanistan. I didn’t give them any attention. They were so ignorant as is and me fighting them would just end up with gaslighting my situation. They eventually found out it was because of my back, and since they couldn’t actually see my scar or wounds, I think it was hard for them to understand what I went through. So many people still didn’t understand even after I explained it to them and replied with ‘that sucks’ or ‘yeah I have scoliosis too’. I understand high school students don’t have the mental capacity to give someone sympathy or politely console others who have experienced pain. I found these comments very insensitive, but I couldn’t blame them. They didn’t know how to respond to me. They couldn’t understand. They have never been through this.

I understand that others may ~have or had~ scoliosis, but obviously it was so minute that it didn’t affect their life. Yet, here they are trying to relate to me? That didn’t make me feel better. It seemed like it was trendy to them. I got really sensitive about the subject matter and never spoke about it again. I thank the friends for trying to understand me and being by my side. I also realized who was actually my friend and who wasn’t. Life is really funny when you are in pain and your friends don’t show up or call you. Another hard lesson to learn so young. These realizations made me very cynical. It made me think twice about my friendships, be more cautious of the people that surround me, and more importantly to stick up for myself. Before, I never spoke for myself or anyone else. I was timid, shy, very to myself (still am if you first meet me), and very nice, like too nice. All of that had to change. It sounds so drastic, but I had just gone through something extreme and saw who was talking bad about me, who showed up for me, and who didn’t. I know people make mistakes, they’re busy, everyone has their own life to tend to, but a simple, sympathetic note or call would have sufficed for me. Maybe, I shouldn’t have taken it so seriously. It was high school after all, and none of that matters to me right now. I am an emotional person and I felt bad. I had every right to feel that way. From then on, I vowed to myself that if I can get through this back surgery, I could get through anything life through at me. I was stronger now, not weaker. I could do anything and I didn’t need anyone else beside me if they didn’t want to support me. This was a life changing moment for me. This surgery made me who I am today. I have no idea where I would be in my life if I didn’t go through this. I am very thankful for it, even though it caused me mental and physical distress.

A few months later in the summer, my family and family friends decided to take a trip to Hawaii to celebrate my recovery (bougie as hell, I know) and let me have some fun since I had been stuck inside for four months. One of the days, my family friend and I decided to ride canoes in the ocean. I was cleared for physical activity and was told to live my life without any restrictions, just to listen to my body and maintain a good lifestyle.

We both went to the canoe guy and signed up on the beach. I grabbed the canoe and pushed it into the ocean as my friend was signing us off with the guy. He asked her about the scar on my back and asked if I was okay to ride the canoe. She said yes and explained that I had surgery earlier in the year. He replied and said something I will never forget for the rest of my life. “Wow, she is a warrior.” That statement meant everything to me because it is what I am, a warrior who has overcome an obstacle in her life.

__________

The next few years, living with my back became easier, less awkward. I lost a lot of feeling in my back from frayed nerves and scar tissue. Each year, I got more flexible, gained more feeling in my back, and strengthened my body. I worked out three times a week for three years. I wanted to support my back, grow muscles, gain weight, and stay healthy. I was sent to a gynecologist for my period issues and eventually fixed that as well. Below, I answer some common questions I have received in my lifetime as well as some elaborations to how I live my life today.

>I still suffer with back pain every single day of my life. Back pain, to me, has become normal. If I sit too much, lay down too much, or stand too much my back hurts a lot the next day. I am flexible with my spine in that I am able to do everything everyday activities require. I can’t do every single yoga pose on the planet. I am allowed to play sports – many kids who are dancers or gymnasts with scoliosis eventually go back to it. I have to be careful every single time I pick up something heavy and use good posture. Believe it or not, I can still slouch with my lower spine and my shoulders. It isn’t good for me at all, but it is still a habit even with rods down my spine. I can bend over and touch my toes, I can lean side to side, and even twist back and forth.

>Since being in architecture school the past seven years, my physical health has not been good. My back suffers more when I don’t keep a good physical schedule. I plan on going back to working out now that I have graduated with my masters. I stopped working out freshman year of undergrad because my sleep schedule and eating habits were awful and working out was actually hurting me more than helping me. I think a balanced life is important, it is just so difficult to maintain while being an architecture student. It is such a different lifestyle, one that needs to change, but I did what I could. I am still doing what I can.

>I can’t see my back scar physically. I sometimes forget about it. I am not ever aware that there is metal in my back, but I do feel it. When I am mentally aware of it, it feels very weird. It feels like someone is holding my spine with their hand through my back. It is very displeasing. Again, I don’t always feel it because I forget about it.

>My back looks different compared to others and that is okay. I used to be very embarrassed of wearing tank tops or strapless dresses that showed my upper back. I didn’t want someone to notice and ask about it and then I would have to find some explanation and I really didn’t feel like doing that every time I went somewhere. I used to have long hair to cover my upper back. It even took a while to be comfortable with being in a bathing suit. Now, I don’t even think twice about it. Scars are cool and I want to own mine.

>I ended up growing another two inches since my surgery, I am now 5’11”. Where did that height come from? I have no idea, perhaps my legs. It makes me wonder how tall I was actually supposed to be, like without this surgery, could I have been 6′ or taller? Both of my parents are really tall, my father is 6’2″ and my mother is 5’10”, my younger sister is about my height.

>If you have heard of weather pains from other people who have had metal implants in their bodies, they are definitely real. Every Winter, or any cold front coming in, I can feel it in my back. My back gets so stiff and aches. The first few years it would hurt a lot, I’d feel colder than normal, I couldn’t release the stiffness no matter what I did. I guess now I am used to that feeling every Winter because I barely notice that anymore.

>I have met some people with scoliosis who have had the surgery and some that did not. Our neighbor down the street had scoliosis, she is about 80 years old. When she was growing up the procedures were much different back then. They did not have the technology they do now to help people with this issue. She unfortunately could not have the surgery. She had endured so much pain her entire life. I look at her and my body aches. She is contorted, twisted, and so, so fragile. I hug her and I feel her pain. She visited me frequently and was happy that I could have this opportunity. I wish it was the same for her. I have met two young girls with the same surgery as me. I helped one of them with their recovery, which was a rewarding experience. It was heartbreaking to hear her pain, but she is doing great and living her life. This disease isn’t really common to hear, but I was surprised to hear that quite a few people do have it.

>Am I considered disabled? Well, technically yes, but I do not put it on any job application or tell anyone about it unless it is a doctor. I only notify someone if the activity I am doing has potential to hurt my back. I personally do not consider myself disabled. I am able to walk freely and do the every day necessities to live my life with no help and by that definition I do not feel disabled.

I could keep typing out everything that has crossed my mind with my journey, but this post would be a novel, it already is such a long blog post.

If you have any questions, please comment below.

Endnotes

If you got to the end, thank you so much for reading my story. I have been hiding this for so long and I have been reluctant to speak out about it, even to my close friends.

I thank you for being by my side and supporting me.

All photos are taken by Sophia Kountakis. Not sponsored, but some links may be affiliate links where I receive a small commission from your purchase.

outfit: Zara suit (similar top – similar bottom)

My Journey With Scoliosis I have contemplated for many years if I should ever speak about this. I do not like to show my personal life, or experiences that I have been through.

#i have scoliosis #my scoliosis journey #scoliosis #scoliosis awareness month

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