Anaphylaxis

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    A bit of a struggle

    I am tapering off of my benzodiazapine on my own without any other meds because I get Anaphylaxis to everything. I still have no doctors to treat me or to even test ne for a diagnosis and its been years. I weigh my crushed pill powder and measure out what i need daily on a mg scale. I am noticing so many great things about coming off of a ben so like just being able to process simple things in life, but the rage has returned. I find myself getting triggered more easily, and that anger in my gut feels like it’s there to stay and I need to find a way to release it. I have been so angry and unable to release it a matter how many times I’ve tried. Angry at the medical community for trying to murder me (as my brain tells me) I have medically related PTSD as well as 17 years of childhood trauma and every time I go to a doctors office they’re mean to me and it triggers me into a full PTSD attack. On top of that I am also taking care of my dad on hospice, who I am up with around the clock, while he has psychotic fits constantly because of his brain tumor, but he abused me for so many years growing up that even that triggers me and I have to keep my distance from him when really all I want to do is help him. Everything seems to be triggering me more than usual. Not always into a full PTSD attack, but I will sit around with adrenaline pumping through my body most of the day. I’m trying to figure out ways that I can teach myself how to deal with all of this. Doing my best to stay in alignment with love and peace. ❤️#CPTSD #ChronicIllness #Dysautonomia #MastCellActivationDisorder

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    The only help was available

    I had gotten dysautonomia after a doctor gave me the wrong medication back in 2007 that caused temporary psychosis and I was left with nervous system damage that nobody could even tell me about. As time went on, I stopped being able to eat because of the severe pain, nausea and vomiting that would occur from it, before developing what i now know its POTS. For over 10 years, every cardiologist i went to refused to test me claiming that it was either all in my head or that I was too young to have a heart issue. I began fainting constantly and having SVT episodes but I didn’t even know that it was SVT until years later because doctors and hospitals just don’t care. One time, i went to the hospital after having a severe svt and my blood pressure dropping and staying low at 62/45. Instead of helping me or even taking my blood pressure, the er staff punished me but tieing me to a bed even though i was not acting like a psych patient, and sending me off in an ambulance after injecting my arm with a intense dose of Ativan even though I was fine and willing to go, to A psychiatric hospital. The therapist there didnt even know why i was there because i was emotionally fine. Unfortunatly for me, having this on my record would make it completly impossible to get any doctor care whatsoever in the future for my illness. For some reason in the good ole USA, mental health discrimination is a severe issue in the medical field. If you were ever diagnosed with anything such as anxiety, you will be written off as crazy. I ended up having an ischemic heart attack and my heart almost exploded from having an SVT but according to Dr. staff it’s always all in my head. I became bedbound for years. Every friend but one deserted me or bullied me. My family hated me. I woupd just lay in bed staring at the ceiling day and a day out praying for death. I ended up getting two ablations on my heart tht saved me and i had to teach myself how to walk. The day I used my walker to walk to the house next-door and back was the best day of my life and I filmed it and posted it on Facebook. All i got was an inbox of harassment and bullying for it from those are used to consider to be my best friends, my sister. Just when I thought I was getting better I suddenly started getting anaphylaxis to all my food. Trying to explain this to ER staff kept landing mean in the psych section of a hospital, being interrogated instead of helped. I’ve been thrown out of wheelchairs because they didn’t believe parts was real at a hospital in front of many people and nobody cared. I was always left shaking and crying on the floor somewhere well passerby‘s just look at me like I’m crazy because I’m terrified of the nurses because they are bullying me and abusing me. There is absolutely no way to sue nurses doctors or hospitals nowadays. And they know it otherwise they wouldn’t do this stuff all the time because it’s not just happening to me. One time, i had to camp in a hospital parkinglot because I had not eaten in six weeks because everything I put into my mouth caused severe anaphylaxis and I couldn’t keep injecting myself with EpiPen‘s. The hospital refused to help me so I camped there. On the fourth day, I started getting anaphylaxis after taking the medicine that I’m supposed to take every day and have been for years. I went inside of the hospital clenching my neck at the front desk all the way to you laughed hysterically with a friend of hers on her phone while I was frantically motioning to her to help. She gave me a dirty look and turned the opposite direction. I started panicking because who wouldn’t? Only was completely ignoring me and thought my suffering was funny. She didn’t turn around and woth a sarcastic rude voice said, “ughhh can i help you??” I could barely talk at this point but I couldn’t see straight because my blood pressure had dropped and I was trying to tell her that I need an EpiPen and she kept chewing her gum and snapping at me, “well we cant save you unless you sign in” she knew I couldn’t sign in. What are they do for trauma victims who can’t sign themselves in? refuse to save their life? I tried to sign and I kept falling over a little bit and I couldn’t see the paper and I was frantically trying to breathe and so I fell on the ground. She nonchalantly said “well then i guess you dont get help then oh well” and went back to chatting on her phone and laughing. I was going to die. I was surrounded by people and again no one cared. Two male nurses came out looking down at me shaking and crying on the floor trying to breathe while I was gasping for air. “ oh your fine you’re still kind of breathing hahaha!” They came in raged that they were murdering me. Well I was struggling to stay alive and in a rage and fight for my life, I was crying hysterically so they had security physically pick me up and throw me out the door onto the concrete which spilled all the contents of my purse all over the ground and I laid on the ground scraped up and bruised from them just dying in the sun while two ambulances were right next to me woth ems crew in them, and nirses and people walking right by me. Everything started going black. Just a passerby stabs my leg with her EpiPen. All of those people still work there. Nobody cares. I think getting treatment for PTSD from it all but unfortunately every time I have to go to a doctor or hospital I have to face the ones that tried to kill me. Every time I have a new doctors appointment I already know that I’m going to be bullied and I always am Which causes another PTSD attack and then I am the one looked at his crazy when they’re the ones that don’t do the job. I am seeing it from so many people nowadays more so than ever. This happens to people at such a high rate and it’s not being talked about and nothing is being done about it which is why I decided to write a book all about it. Im still working on this medical book which also has interviews with doctors and patients in it. It needs to be talked about because it’s not just us that deal with it it’s at an alarming high rate. I suspect that I have mast cell activation syndrome but I’ll never know because every doctor bullies me about it. I even was sent out to get a bone marrow biopsy but the guy performing the biopsy laughed in my face and called me a joke and I wasn’t able to get it. I’ve had swollen lymph nodes for years that have never gone down and I went to get a biopsy of it and was bullied horrendously for it while they told me it was probably just a cold even though it’s my doctor that sent me out for the test. In fact in all of these years I have only come across two out of thousands of different kinds of doctors and nurses that were actually decent human beings. It doesn’t matter if they can help me at all, what matters is they treated me like a human being. If you don’t know and you know you can’t help me tell me that don’t bully me because you don’t want your egos crushed. Majority of us had to become our own doctors so in many ways yes we are the experts. I think a lot of doctors are put off by this but it’s just the truth. We the patient, are the ones that spend years upon years studying medical journals studying the brain studying cells in the body studying odd illnesses from refutable doctors around the world and their writings, we have learned how to read MRIs and such why? Because we are our only advocates and we are the only ones that are onto something. We know so much about our own illnesses that doctors need to give up their ego trips and learn from us. Another thing I need to tell people is I’ve learned that if you ever get a test done, always go pick up every copy you can of the results because the doctors will nine times out of 10 always lie to you about your test results.

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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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    Archer introduction!

    Hello my name is Archer Eli (he/him) I am 19…And I created this group :)))

    I struggle from several chronic illnesses including : POTS ,MCAS ,EDS , gastroparesis , vasovagal syncope, idiopathic anaphylaxis and I have some unexplained symptoms. I have a central line port and often use mobility aids!

    (The picture is of me and my cat Hobbes)
    #introduction

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    Looking for Resources

    I have had these symptoms for years. They come and go. Recently I had multiple anaphylaxis. I would like to post additional pics for resouces

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    Reaction free time

    #Anaphylaxis

    Does anybody else feel like they can't believe they have anaphylactic allergies after a certain amount of time without a reaction? I've been E.R. free for almost two years, and sometimes, I wonder if it's all just a figment of my imagination because I've been without one for so long.