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    Community Voices

    A bit of a struggle

    <p>A bit of a struggle</p>
    Community Voices

    The only help was available

    <p>The only help was available</p>
    3 people are talking about this
    Aunia Kahn

    My Journey to Become 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 desired 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 By the 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. As I type that out, it sounds a little wacky. 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 mild 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 3.5 years, they pinned me as 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 almost immediately when they could not figure me out and I was not a simple patient. Real doctors don’t like a good mystery like they 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, build 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. Connection Through the Digital Space Another thing that helped me through the tough times was being creative. 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 Rise Visible, 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 typically lived more normal and abled-bodied lives, 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 already learned to be careful and find ways 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 or if you’re able-bodied or not. 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 by building them an e-commerce platform. I helped other people start and set up online courses for teaching what they loved. I also helped small businesses 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 a medication that changed my life and improved my prognosis – still no diagnosis. In June 2021, I was given a life-changing diagnosis after almost 20 years. I was diagnosed with Ehlers-Danlos syndrome (type 3), mast cell disease, dysautonomia, and POTS. I also have PTSD, craniocervical 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 in the same order – this has been every day for the last 10 years) and can easily go into anaphylaxis over just about anything my body finds abnormal. Food gets 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 character in Jenny’s children’s fairy tale “The Green Ribbon.” I also have a slight lisp my partner thinks is cute. It’s all a complicated hodgepodge of genetic mysteries and confusing “ah moments.” I can’t say I have ever explained my whole medical record which is about 3 inches thick in just a couple of medically poetic sentences – short and sweet for the win. I Am Disabled. I Can’t Pretend. I have a life-changing diagnosis that I can’t pretend I don’t have. Believe me, I have tried. The moment I pull my elbow out of socket by twisting the wrong way or almost black out leaning over to pick up a dirty sock, reality hits. I have learned to accept what is and speak out, because the world that needs people to be real, authentic, and vulnerable. With my newfound stability moving out of survival mode to 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. I am on a mission to create a space that empowers disabled business owners. The Ebb and Flow of Chronic Illness 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. Personally, I can stand up and be a voice right now. 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. Business ownership has given me the ability to be flexible with my needs, the ability to help others, and the ability to maintain an income. 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.

    Community Voices

    I Was Not Always A Proud Disabled Business Owner

    <p>I Was Not Always A Proud Disabled Business Owner</p>
    13 people are talking about this
    Kateland Kelly

    Why Minutes Matter During Treatment of Anaphylaxis

    “This seems a little dramatic.” My head snapped back toward the mother carrying the registration clipboard, and I couldn’t help but swallow my frustration at her glib remark. I was leading the way from my urgent care lobby into the procedure room, my eyes never leaving the 13-year-old struggling to breath. “All I’m saying is that the last time I brought my other kid here for an allergic reaction, there wasn’t that much fuss.” My focus was on the child in front of me, snot now pouring down her face in two shining rivulets, her hands trembling as the pulse oximeter registered a jackrabbit’s heart rate of 115 and climbing. Her face was round, shiny, and stretched; her lips were trembling, swollen beyond a normal pressure. My own blood pressure started to rise as I initiated an anaphylaxis code while the mom continued to complain about my approach. “Don’t you think you’re being a little dramatic?” She paused walking, looking at my staff as they flurried around us prepping the procedure room, using a word that had me bristling silently. “Ma’am, this daughter is in anaphylaxis and we need to administer epinephrine immediately.” The girl’s face turned a deeper shade of pink and hives continue to blotch her neck. “I’m scared,” she choked. “I know you are,” I patted her hand, the other holding the autoinjector ready to go. “But you’re in a safe place and we’re going to get you to where you need to be.” “Where’s that?” Mom asked. “After we administer the epinephrine your daughter will be monitored for a biphasic allergic reaction. She needs an IV placed, a saline flush, and to be in an emergency department for monitoring for the next four hours.” “Why can’t you do that here?” Mom asked. I look around, for the first time, wondering if this woman is in the same urgent care as I am. I wondered if she had any idea her daughter was dying in front of us as she continued to debate my supposedly dramatic bedside manner. “No, ma’am, we’re in the middle of a COVID surge and we’re not an emergency room. We’re here to stabilize her and get her where she needs to be.” “I don’t wanna …” The child’s voice wafted up from the exam table, and she looked at me and her mother pleadingly, fearful of the injector in my right hand. “You don’t have to, honey.” Mom interjected. “Let me go find your dad.” I watched as the mother left the scene, heading out to the lobby, and out into the parking lot to find her husband waiting between the fast food restaurant and the cell phone provider. We were, after all, in a strip mall urgent care setting. No one outside would imagine the scene we were holding. Seconds ticked by and her pulse continued to trend upward. We hit 130. Her blood pressure continued to climb. Cresting past 200/100, a level that would concern me for an adult stroking out, I knew I couldn’t wait any longer. Uncapping the safety, both parents popped back into my sight line and I waved to them urgently. The father seemed to be more aware of the gravity of the situation; he took his daughter’s hand and asked me what I was doing. Again, as calmly as possible, I explained to him that his daughter’s condition was an emergency. Not an urgency. This was real and this was really happening right now. Almost anticlimactically, the family consented to epinephrine administration and with a single click and three seconds of holding our collective breaths, the child finally got the medication she desperately needed. The snot stopped running down her nose. Her face seemed a little less pink. She started to swallow her saliva instead of letting it run out of the corners of her stretched lips. She sat up a little bit. “There, she’s OK isn’t she? She doesn’t need to go anywhere else. She’s better.” The mother said triumphantly, crossing her arms in defiance. Before I had a chance to argue further, the paramedics arrived and I turned the case over to them. As they ushered the family out, I overheard the lead paramedic saying to the mother, “Epinephrine is a Band-Aid and while your daughter is stable right now, she can get much, much worse so she will be safest under observation.” So, what should you do if you find yourself concerned that you or a loved one may be experiencing anaphylaxis or a severe allergic reaction? Read on to get the clinical scoop: This diagnosis of anaphylaxis is made clinically and it is one of the true emergencies that can kill you in minutes. While the most common signs of a severe allergic reaction are skin manifestations (hives), up to 20% of patients experiencing anaphylaxis do not show skin signs. Rather, they may present with a rapid progression of the following symptoms: Evidence of respiratory distress (stridor, wheezing, dyspnea, or retractions) Signs of poor perfusion Abdominal pain and vomiting Finally, an individual might experience an abnormal heart rhythm that leads to collapse and then death. Clinically speaking, there are NO absolute contraindications to administering epinephrine in the setting of anaphylaxis. Children under 50 kg may be treated with epinephrine 0.01 mg/kg injected intramuscularly into the mediolateral thigh whereas for children with a weight greater than 50 kg, the maximum dose of epinephrine is 0.5 mg per dose. Injections may be repeated every five to 15 minutes if no response is seen clinically, though most patients respond within three injections if anaphylaxis is promptly recognized and addressed. Epinephrine is one of the tools in the clinicians box to stabilize anaphylaxis but once that’s been implemented, oxygen, albuterol, glucocorticoid steroids, saline, and vasopressors may be utilized if clinically indicated. Children that have signs of poor perfusion, or who have persistent symptoms not responding to injections, need IV access for infusion and should be in a setting where their airway can be monitored and maintained. In true emergencies, minutes matter. If you suspect you or your child is experiencing signs of a severe allergic reaction or anaphylaxis, call 911. Then, please listen to us.

    Community Voices

    Archer introduction!

    <p>Archer introduction!</p>
    Courtney R.

    Struggling With Self-Esteem When MCAS Treatment Changes Your Body

    I had just said goodbye to my son at school two weeks ago and while walking back to the car an acquaintance yelled across the parking lot, “Congratulations, when are you due?” Stunned, I said, “I’m not,” and walked quickly in the other direction. Even writing this I cringe — it is not the first time and I suppose won’t be the last time this has happened to me, but I still haven’t figured out how not to be jarred by it. Logically, I know that I have no control over this — I take a medication daily that allows me to eat foods without reacting. It keeps me from having anaphylaxis when I go outside my bubble and keeps me stable when I am faced with my medical hurdles — like getting a COVID vaccine, having surgery, or receiving iron infusions. But the medication also makes me swell, it makes my face rounder, it makes me gain weight and yes, it even makes me look pregnant some days. I obviously know this; I am living within my body, uncomfortable and frustrated when I see the changes in my appearance, but when someone else says it out loud, the words sting in a different way. By the time I got to my car, I was beyond upset and embarrassed. I have hesitated even writing this post, not sure I could expose this moment to others, but I also know I am not alone in experiencing this. A day or two later, a woman posted in my rare disease Facebook group a photo of herself looking six months pregnant and asking if this happened to others. Unsurprisingly, many responded sharing their pain and frustration with this appearance change. There are so many of us who live in bodies altered both by our diseases and also the side effects of the treatments and medications meant to help us. Many times, this means losing our pre-diagnosis physical self. And while everyone says it should not matter how we look — it does. As I look in the mirror, I remember what I once was, longing for the days when I did not have to think about someone mistakenly asking me if I am pregnant. When getting dressed did not seem like such a challenge, never knowing exactly what will fit from my closet. Hoping I do not look too swollen in my face for an important zoom work meeting or worse yet, having to be in person at a work event. Hoping every day that my diseases will stop being visible. As I have reflected on this over the last two weeks, I am sad that so many in the rare disease world feel ashamed by their appearance. What does this say about our society and how ingrained we are to look for “normal” when people for so many different reasons will never fit that mold? I have realized that the problem isn’t about being asked if I am pregnant (though I would suggest not asking someone this), the problem is how disappointed I am with the reflection I see in the mirror staring back at me. Why can’t I still feel beautiful even on the days I look swollen and red? Why can’t I still feel confident in myself when I am not my usual petite self? I know I need to try to find a way to feel good and beautiful in my body — not for others, but for myself. I know some days this will be easier than others, and this is OK too as long as I am kind to myself and remember that rare can still be beautiful. That I can still be “me” even if some days I do not see myself in the broken reflection looking back at me. And to the many others who live this reality with me — please know I see you. I support you. I stand with you. And I remind you just as I remind myself: we are beautiful, we are strong, and while we may be rare, we are not alone.

    Community Voices

    Looking for Resources

    <p>Looking for Resources</p>
    1 person is talking about this
    Ashley P

    When Dysautonomia Found Me

    You probably won’t see it coming. I didn’t. I woke up one day feeling perfectly OK, a little over two weeks after wisdom teeth removal, took my ADHD meds, bought Starbucks, and went to my job, which started at 5. At around 7 I began not feeling well. I think I may have even ended the session early. I’d had the feeling before, but usually when I hadn’t eaten anything. So I ate some oatmeal and went to the meetings with my team. I progressively felt worse. I remember hanging on to the chain-link fence as my coworkers smoked and they asked me if I was OK. I wasn’t. A coworker asked if I wanted her to get our MA to take my vitals. I said I felt I was OK for now. Then in the second meeting and building, things got even worse. Sitting in the chair, my hearing became muffled and my vision felt like I was swimming. I knew I would pass out with no help. So I called that coworker’s name a few times. She got help, and I lay on the floor with my feet up for a very long time (BP was emergency high and was very tachycardic) and eventually they convinced me to go to the ER. Part of it was my decision-making skills were not really there as I was confused and still felt awful. Like many with dysautonomia, there were no answers at the ER. But I do remember what the doctor said: “Sometimes these things just happen; it usually doesn’t go beyond that.” Now, one month short of four years since that happened, I can say that he was wrong. Before that day I had never been to the ER — now I have had hundreds of ER visits and over 10 hospital stays in a year. I keep getting worse. And now I know why. My cardiologist keeps saying I’m a puzzle and we have some of the pieces but are struggling to get others. In Feb 2018, I was diagnosed with POTS which was then verified by an autonomic specialist. But two years later, this same specialist has now decided that I have autonomic neuropathy, which can be degenerative if a cause is not found and treatment not started. We are working to find what caused all this, but I also have learned to face my own mortality. I have had anaphylaxis more times than I can count. And with the severe MCAS and the autonomic neuropathy, I have no clue what will happen day to day. All I know is I won’t stop fighting. All I know is one day I felt OK and then that all changed. Chronic illness is unpredictable. But so is life. Whatever you are facing, I know you’ve got this.

    Community Voices

    Reaction free time


    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.