Dysphagia

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    I’m new here!

    Hi, my name is Bellakeene123. I’m new to The Mighty and look forward to sharing my story.

    #MightyTogether #ehlers-DanlosSyndrome #Depression #Dysautonomia #Dysphagia #Gastroparesis #GastroesophagealRefluxDisease

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    I'm new here!

    Hi, my name is universe_song. I'm here because I have just been diagnosed with UCTD, among other things. I am learning to let go of my previous life and live this new one, with all that comes with it.

    #MightyTogether #PTSD #Fibromyalgia #Migraine #Asthma #Dysphagia

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    I Was Not Always A Proud Disabled Business Owner

    I am a proud disabled business owner. However, I have not always been. Being a bubble girl is not a badge of honor I wanted to wear. To be frank, I found my disability shameful, and embarrassing and wanted to hide it. I wanted to be seen as a whole person and not broken.

    Learning young that success was only attainable if you hid vulnerabilities and put on a good game face was a lie. Yet, it felt the most comfortable place to be and I hid it well.

    As A Young Girl

    At age of 5, I was running businesses out of my grandmother’s kitchen. With a mustard-colored rotary phone, stacks of thick books filled with page after page of floral patterned wallpaper, and a pencil in hand I was making imaginary sales – to imaginary people.

    When I type that out, it sounds a little crazy. I was a kid. Did no one else have imaginary clients?

    It was obvious 40 years ago, that entrepreneurship effortlessly coursed through my veins, yet, I never knew that it would be the golden key to living a quality and secure life with a disability.

    Health Crisis

    By the age of 14, my health issues evolved beyond nuisances and by the age of 19, they grew debilitating. I was brushed off by every doctor who either told me “there is nothing actually wrong with you” or “it is all in your head”. As I was placed on a feeding tube formula in 2012 for 3.0.0.5 years, they pinned me as an anorexic and encouraged me to go to a treatment center.

    Living 20 years with no answers, going in and out of the hospital sometimes numerous times a week, and the constant gaslighting by the medical community was very destabilizing and isolating. The loss of support over time from family and friends who started to believe I was neurotic or a hypochondriac felt crushing.

    Honestly, I can't blame them. Yet, I knew instinctively that something was very wrong even if no one believed me.

    My disease is rare, complex, and hard to pin down. I do believe doctors at times tried to help but often gave up. Others doctors did not even give me a chance and brushed me off immediately when they could not figure me out and I was not a simple case. Doctors don’t like a good mystery like that do in the show Grey’s Anatomy.

    Aspirations Lost

    My college aspiration to be a therapist was unattainable because I did not have the stamina or ability to stay in college. I enrolled and re-enrolled over and over again. I finally had to let it go.

    During this time, with an abundance of time on my hands and an inability to get out into the world, being isolated gave me a new direction. I leaned into technology to research my debilitating symptoms, create connections, built community and try to gain visibility. The internet and technology saved my life in more than one way.

    I started to learn website design in 1998, back when Geocities was a thing as well as graphic design and marketing.

    Brief History: 1994, GeoCities was created a web hosting service that allowed users to create and publish websites for free.

    Connection Through The Digital Space

    Another thing I loved was being creative so I created fine art through digital means due to my severe allergies to any and all art mediums. I mastered painting with a mouse in photoshop and later was so delighted by the invention of tablets. Creativity and digital connections were not only therapeutic but one of the few windows I had into the real world and helped me stay alive.

    Not long after I had started to gain ground as an artist as well as a woman in tech, I started to create visibility and income which gave me the tools to help others do the same.

    Tech/Digital Skills: A Window Outside And Independence

    Over the last 24 years, these skills and tools have been invaluable to me and others. I run a full-service digital marketing agency where I help my clients create authentic connections with their audience, help them gain a voice, and move into a more visible space.

    Over the last few years of Covid, unlike a larger percent of the population that lived more normal and abled-bodied lives typically, I found the isolation not unfamiliar or hard to deal with. It has always been my normal and nothing changed that much for me.

    I already worked remotely, I was already limited in where I could go. I often wore a mask (as I have for 15 years). I had to be careful and learn a new way to live safely.

    Yet, I found those close to me who lived much more normal lives had taken a big hit. It was jarring, painful, depressing, and isolating no matter what your belief system is. The whole world changed around us.

    Opportunities in Vulnerability

    During this time I found it imperative to be vulnerable and support others who were struggling in this new space. I was able to sustain a number of small businesses by helping them move from in-person to online to an e-commerce platform. I helped others start and set up online courses for teaching what they loved. I also helped then build solid marketing plans so they could let go of the fear of losing their businesses.

    Being a part of a greater story of overcoming and vulnerability for others around me, as well as a very significant life event changed me (more on that soon). I felt it was important not to hide my disability any longer.

    Finally A Diagnosis

    In late 2018, I was finally given medication, which changed my life and improved my prognosis – still no diagnosis. June 2021, I was given a life-changing diagnosis after almost 20 years of suffering from Ehlers Danlos Syndrome (Type 3), Mast Cell Disease, Dysautonomia, and POTS (Post Orthostatic Tachycardia). I also have PTSD, Cranio-Cervical Instability, Hiatal Hernia, Dysphagia, Vocal Cord Dysfunction, Neurodiversity, Esophageal Dysmotility, etc.

    The long and short of this is I am Gumby. I am allergic to almost everything ( I can eat only 10 foods) and can easily go into anaphylaxis over just about anything my body finds out of normal such as food getting stuck in my throat and sternum making it hard to breathe or digest food.

    My autonomic nervous system is on strike and if I stand up or lean over too fast, my heart rate goes up so fast that I can pass out. My head could fall off like the children's fairy tale "The Green Ribbon" and have a slight lisp my partner thinks is cute.

    I can’t say I have ever explained my whole medical record which is about 3 inches thick in just a couple of sentences – short and sweet for the win.

    I Am Disabled. I Can’t Pretend.

    With a life-changing diagnosis that I can’t pretend I don’t have, I can be more active in a world that needs people to be real, authentic, and vulnerable. With my newfound stability moving out of survival mode to the thriving mode, it would be a disservice to not share my story or try to amplify the voices of other disabled people in the world and in business.

    If I hide behind my disability and don’t step into my truth, I am a hypocrite. If I believe in diversity, equity, and inclusion only for others and not myself… how can I be an advocate?

    It is cliche to say that “we have to put on our mask first if a plane is going down”, but it is true. We can’t empower others if we minimize ourselves.

    Even though right now my disability is stable and I can step up and reach out to help others, it might not always be the case. It is obvious to me and others who live with a chronic illness that our abilities to help and participate in the world are often unpredictable. It is an ebb and flow.

    We must meet ourselves where we are right now and right now I can stand up and be a voice. Later I might have to quietly slip into the background for deep self-care and repair without feeling bad, shameful, or less than. I can champion others who are able to hold the light for a while and run with the torch.

    I identify as a disabled business owner and I stand with others in the best way that I can right now. I stand with others who feel marginalized in society.

    Visibility for disability is so important.

    I am proud to be a disabled business owner.#

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    Questioning the origin of my vocal spasms

    #VocalCordDysfunction #Dystonia #Autism #Dysphagia #SensoryIntegration #SensoryProcessingDisorder #MotorDisorders #Dyspraxia #Apraxia #ApraxiaOfSpeech #Undiagnosed I posted a question on the vocal cord dysfunction and dystonia communities earlier tonight, and then did a little research on vocal cord dysfunction in order to see if I could find any answers to a question that has been unanswered or partially answered for decades in my life. About the cause of the painful vocal spasms I've had all my life, and the dysphagia issues that developed in early adulthood, that seemed to be related. An exacerbation, if you will. Both have waxed and waned significantly since.

    What I found google suggested two things: 1. Nobody in the medical community really has a clue about vocal spasms, although the field of dystonia has more knowledge than the rest. And 2: Given all my other issues, it is entirely likely these symptoms are not caused by jyst one thing. It could be a number of things! Oh yeah, I forgot to add #Trauma #PTSD #CPTSD and #Asthma to the list of potential factors. Oh, and #childabusesurvivor .

    Stress does seem to have played a factor, as does #Fatigue especially as I consider the baseline level of fatigue and stress I lived with for most if my life that I am only now beginning to realize the effects they must've had on me, and how much it all must've inhibited my abilities and ability to grow as a person, and to learn. (Which were hidden due to my high intelligence and academic ability. #Hyperlexia played a factor in that. And the general intolerance of the people in my environment, and the ableist nature of society in general.) And the cost its all had on/to me.

    But there's a lot of neurological complexities too, as you can see by the hashtags. It makes me leery of trying yo officially get this sorted out after all. Most medical professionals won't know quite what to make of it all, if they even know the terms! Still, I wonder... I've always thought it was one thing, or mostly one thing, but maybe it isn't. Maybe it is more part of the whole "interesting neurological mess" thing so many autistics find themselves dealing with. (Multiple neurological syndromes that are too complicated to try to explain how they all work, never mind interact, to outsiders)

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    A Journey to Hell and Back

    This is going to be a very long read I’m afraid. Perhaps you can read this when you have to pretend to be busy or when you actually are busy but need a distraction? Either way, buckle up and keep a cookie ready (you’ll know why when you reach the end)!

    Birth and Childhood

    For as long as I can remember, I have had a brilliant mind and a tired body that just couldn’t keep up. I do not recall being a very humble person, or a patient one either for that matter, which is probably I was born as a premature baby in a government hospital in Madras, India, and survived thanks to its incubator.

    I had primary complex as a child, and remember my regular visits to a pediatrician (who called me “vendaikkai” – okra, for how I looked) with my father. Sports or any physical activity made me tired faster than anyone else in my class or friends circle. I remember cursing my father for not letting me go to new year’s eve celebrations with my friends in my neighbourhood while silently thanking him in my head as my feet would kill me from just a few hours after the cultural events that we kids did together.

    Teenage and University years

    I was also extremely anxious, which was just chalked to being nervous and over-ambitious. I used to throw up or have severe nausea before any major exam or competition, despite the fact that I would go to be the topper in almost everything I tried. There was a joke in my circle that if I didn’t throw up before an exam I wasn’t going to do well. What can I say – this is the stuff vicious cycles are born of.

    When I was 19 or 20, I was diagnosed with polycystic ovarian syndrome. College years were not the best to have crazily irregular periods, acne, facial hair and weight gain. Needless to mention, my feet were planted firmly in nerdville, being that girl towards whom boys ran only the morning of every exam.

    Let the diagnosis game begin!

    When I was 23 and newly married, I was diagnosed with PTSD, months after I had undergone an assault (of which no one, except my then fiance and now husband) knew. Starting your marital life being scared of sex is not great – let me assure you, if you had any doubts on that count (although why would you?).

    When I was 24, I started having severe back and knee pain, which was chalked up to bad posture and weight gain. Lose weight, they said, not making it clear how that was supposed to happen when nothing I ever did shifted the needle on the weighing scale except to the right.

    When I was 27, a few months after I gave birth to my only son, I was diagnosed with degenerative disc disease and patella femeral syndrome.

    When I was 28, I was diagnosed with post partum depression and chronic insomnia. I remember throwing a mug with coffee on the kitchen shelves at 2 am – I don’t remember cleaning those stains.

    When I was 29, after almost five years of living with pain, I was diagnosed with Fibromyalgia syndrome. You would think I must have been devastated. On the contrary, I was relieved. Relieved that all my pain and problems had a name. If I knew what was about to come, I probably wouldn’t have been so relieved. Oh well, those were the days of naivety.

    When I was 30, I was diagnosed with gallstones, after a terrible attack.

    When I was 31, I was diagnosed with RSI and underwent a surgery to fix it which only made my right hand worse than it originally was. I should have sued that surgeon and considering that suing people was my livelihood, I have no idea why I didn’t!

    When I was 32, I was diagnosed with dysphagia caused due to Helicobacteria pylori, followed by severe GERD and stomach ulcers. I couldn’t eat solid food for months but then I lost 17 kilos. Even-Steven?

    When I was 33, I was diagnosed with cluster headaches and I had high blood pressure for the first time which was not really treated – either by my primary physician or taken seriously by me.

    A near death experience

    When I was 34, I nearly died from a hypertensive crisis while on vacation on top of a mountain in the black forest region. I will write a lot more about this separately. I started suffering from debilitating episodes of anxiety and severe panic attacks which put me in the ER. I was diagnosed with severe burnout.

    After months of testing and trials, I was diagnosed with asthma, costochondritis, serious hormonal imbalances involving the adrenal glands causing high blood pressure, severe vitamin and mineral deficiencies.

    The pain part of my life has been covered. What about the rest?

    In between all this, I got a law degree (with honours and gold medals), fell in love and got married, moved to a different country, got a a masters degree in international law cum laude, set up my international law practice and expanded it to have clients from seven countries and a team of lawyers I supervised, gave birth to a wonderful boy and bought my first home with my husband.

    Living in denial

    For years, my coping mechanisms to deal with my pain varied from fighting it hard to ignoring it altogether. Every time a new illness or symptom cropped up, I would cry for a while, start treatment for it and keep going on after that. I would change my diet, try exercising, but eventually lapse into a pattern of over-working, little to no exercising, eating whatever I could find my hands on in between my busy schedule and sleeping whenever I could. Given a choice between playing with my son or exercising, I always chose the former as I had little time with him to begin with.

    I firmly believed that I could everything I wanted in life irrespective of my pain or health issues, as long as I put my mind, heart and soul to it. Unfortunately, the mind, heart and soul can only exist and function as long as there was a body to hold them safely. As my grandmother would say, you cannot make a fresco without a wall of some kind. There is only so much a body can take, after all.

    Time for change

    I started making changes to my life very slowly. I stopped working when I was diagnosed with burnout. I started undergoing regular therapy and physiotherapy sessions. I started doing yoga and going for regular walks. I started singing, praying and trying out art again. I started spending more time with my family. I truly enjoyed the time I spent with my son – reading, painting, baking, writing, walking – and continue to do so with great happiness.

    I started paying attention to my body a bit more. I learned to recognise symptoms, triggers and means to stop them in their tracks. I learned to differentiate between an actual physical emergency and a panic or anxiety attack. I practiced my relaxation exercises which come in handy during an anxiety or panic attack. I started advocating for my health and thankfully found an amazing doctor who trusted my instincts and adapted my treatment every time something changes. I dropped from three blood pressure pills a day to one. I dropped from 4 inhalations a day to 1 or as needed. I have lost 7 kilos.

    I still suffer a lot though. I still have panic attacks. My food intolerance is beyond messed up and the list of what I can eat is very, very small. I don’t always sleep well and sometimes fear that my insomnia will return any day. There are still days when I yearn to wake up one morning and feel completely refreshed. I sincerely cannot remember the last time that happened. I don’t know what exactly to do with my life if I cannot practice law the only way I know to.

    Nevertheless, I have learnt a lot along the way. I have learnt the importance of a good and balanced diet, proper supplements, exercise, appropriate treatments and above all, how to advocate for your health when the system is not geared to support you or your instincts.

    So, why my story now?

    The only thing that is constant in all this is my pain. It is a true and intrinsic part of who I am. I kept reading about how I should not let my pain define me and I should learn to overcome my pain and be happy. The truth is far from that, as far as I have experienced.

    Imagine having the flu, as well as the muscular pain and inflammation associated with your period, a day after giving birth. That is how I feel every single day of my life. I know that men cannot understand this but I’m sorry – I have no other way to describe Fibromyalgia! It is hard not identify with something that is so omniscient in one’s life. There is just no way you can be happy when you feel like you have gone 20 rounds with Muhammad Ali even though you have just now woken up after 8 hours of sleep! It doesn’t mean you have to be depressed all the time and do nothing either.

    The truth lies somewhere in between. I cannot forget my pain, nor can I overcome it as there is no known cure for Fibromyalgia yet. I can, however, accept it. I can assess what changes are needed in my life because of my pain and adapt accordingly.

    It does not matter what I do with my pain or even despite it, but what matters is what I do because of it. If I can support and help others who suffer from chronic pain, by sharing with them the wealth of knowledge I have accumulated over so many trials and tribulations, or even just by letting them know that they are not alone, then that would be a great thing which arises because of my pain. Don’t get me wrong – I’d still chose a life without bloody pain any day – but since I cannot make that choice, I might as well do something good with it.

    That is the reason for for sharing my story now. That, and the fact that it might be better to scream into a void in the internet (where Janet from the Good Place resides, probably) than in my own head.

    To my fellow “spooners”, I do not want to be a quiet sufferer, nor do I want to be a beacon of positivity. I simply want to tell you that it is alright to acknowledge a painful identity.

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    First post

    Hello!! I'm new here, I found this site while on pinterest love the quotes they really help with moments of feeling alone, I suffer from Fibromyalgia, Panic, PTSD and an over thinker. It has been a really difficult year for me. I lost my furbaby in December 2weeks before Christmas she passed away while I was holding her. She was my light, my anchor. I miss her every day, i still see her and hear her bark like she's right their waiting for me to play. Since that day I feel lost, empty, like theres a bad luck cloud following me. Between night terrors, restless legs, tremors,headaches, heart palpitations and dysphagia my life has been upside down.. I push forward for my family with my father being sick and my mothers spinal surgery cancelled thanks to covid. I know I must keep smiling, it is my specialty and helps with the panic to know I can help someone see the beauty in the darkness and simplicity in the chaos. I look forward to being apart of this community. Sorry so long winded

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    Procedure

    Today I went under anesthesia to get my IUD out, pap smear, and Lupron shot. I’m pissed at how they handled the timing.😡 Check-in was at 12:30pm. I wasn’t told I couldn’t eat beforehand and had a small breakfast at 8:45am. They said they needed to wait until 3pm, in case I still had food in my gut that I might aspirate on. So, I waited. 3pm rolls around and they try to put an IV in. Didn’t get it in until 4pm. At 5pm, I ask the nurse how long it’ll be. She tells me they switched 2 people into the spot I should have had, so I have to wait until they’re finished. I finally decide to go to the bathroom, and when I come out, they’re ready for me. It was roughly 5:45pm. The procedure went ok. She took a biopsy of something (and cauterized the area) that seemed suspicious. That might take a week to get the results back. I didn’t like that the nurses in the post-op area tried to help me with putting my contacts back in. Also, putting one of my shoes on when I clearly didn’t have a problem with it. The handle of my cane got damaged a bit, too. My body feels angry in other ways. Hopefully, that bodily anger and irritated feeling will go away soon. They gave me a soothing anti-nausea pack of things like crackers and ginger chews. I don’t have issues with nausea right now. Heck, I take 2 anti-nausea meds 3 times a day normally. I finally got to eat real food after. We went to It’s Greek to Me, and I got a gyro and fries. Haven’t had a gyro in a long time, and that made me feel a little better. Didn’t get home until 9pm. Didn’t expect to spend the whole day there.

    Tomorrow will be different. I have the esophagram, and check-in is at 8:30am. It’s also in Tacoma. They actually said not to eat anything beforehand. So, I’m not going to. I’ll just get up really early (Tacoma’s about an hour from home), get dressed, and then go. I’m not even having my breakfast pills. It should be an easier ‘procedure’, too. I just have to drink something and they take some sort of imaging of it. #procedure #IUD #anesthesia #Health #Cancer #Lupron #papsmear #esophagram #Dysphagia #angry