Blindness

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    Community Voices

    Why I created living with hypoglycemia

    So I’ve been in a mental crossroads of sorts and finally have some time to get my thoughts together.
    The main point of this group is to share knowledge and stories about this way of living that many people don’t understand the hardships of. It’s also to get rid of the stigma about having hypoglycemia just from diabetes and skinny people needing to eat more.

    My personal story for creating this:
    So in high school I was failing math and was told to have the first 15 minutes of my lunch break as a study hall; well I kept clear vomiting during that period. My mom took me to my monthly stomach doctor appointment (IBS and GERD) thinking it was related to my stomach issues, after some blood test and a physical exam showed no sign of diabetes or obstruction she told me that I was having hypoglycemia. She said that with my body size and metabolism that I need a consistent flow of complex carbohydrates and sugars and protein in my body to keep my energy intake from dropping. I was given a doctors note to allow me to eat in classes and so I began to drink protein shakes and fruit juice and granola bars, plus keep glucose tablets with me at all times.

    As the years went on I kept a list of symptoms of hypoglycemia with me so I’d know what to do and warn people that if I start acting a certain way to force me to have a break and eat something. I even told people that I say angry inappropriate words when I get that way and showed them the websites that prove that it’s a real symptom.

    Now to the most recent incidents that made me breakdown to create this group:

    Before I lost my full time job I was having hypoglycemic episodes there just about once a day (note that it was a toxic workplace environment with toxic people at it’s core) and my coworkers did nothing to help. My body had gotten used to a break schedule where I got 3 breaks every 4 hours on a 12 hour work day, it was this way for a year and a half. Out of nowhere management decided to change the break schedule and told me I couldn’t eat or drink during work. My body went into shock and I began getting: cold flashes, dizziness, pale skin, tremors, muscle weakness, painful headaches and cursing. Every time this would happen my coworkers blamed it on my behavior telling me that I was in control of what I was saying and doing. I went through glucose tablets every day and soon they stopped helping, one time my tremors were so bad I couldn’t open them. My boss told me to get a glucose monitor but that wasn’t covered because I’m not diabetic. My coworkers kept saying “well we haven’t eaten and we’re doing fine” or “if we can’t get a break then you can’t either”, “you’re being unreasonable”. I even got a doctors note saying I had to have regular breaks to eat because of my medical condition but my coworkers thought it was unreasonable and an excuse for me to do less work, my job coach (I’m on the autism spectrum) even said it was an unreasonable accommodation that isn’t covered by the American’s with Disabilities Act or the Job Accommodations Network. I got so mad about this I started to have frequent verbal altercations with my boss and coworkers. I threatened to go to the ER for glucogon and was afraid of getting hypoglycemia blindness in the future.

    When I got fired from there I was kind of relieved because I could have less episodes and eat regularly. Unfortunately when I went to Disability,Aging and Rehab Services to reopen my employment case my case manager told me that I will most likely never find an employer to allow me breaks and eat during the job, she told me it was unreasonable and for me to get over it.
    I wanted to scream at her. After that meeting I realized that consistent hypoglycemia is not a recognized disability and that I can’t be the only one to live like this.

    Community Voices

    My Admission.

    If you don’t like to talk about, deal with, or have feelings, I strongly hope you never have a health crisis. For if you go through a health scare you will experience a large range of emotions that include everything from shame to rage. You won’t be able to control them and they will take you out like a tidal wave. Better yet, others will run from them like they are Tsunami. You can feel like a lone survivor after the devastation.

    I went through a phase where I laid awake at night asking myself and the universe what I had done to all of the sudden be fighting #Blindness as I watch others wash their Doritos down with a Coke? People say silly things like thanking me for sharing something so private as if having a health issue is something to be ashamed about. If we should be ashamed of anything as a culture, it should be for perpetually invalidating the way people feel physically and mentally. I did nothing wrong and didn’t deserve this path. I even checked in with Santa and J.C. and they said the same.

    I have survived and not only continue to survive, but thrive because my own health protocol includes just sucking as much juice out of life in the here and now. While I fight for my sight, I have put to bed that the future may be very different for me; it may be very dark. But I don’t live in the future and while I try to make good decisions that will help me down the line, I live in the now.

    It has taken me some time to put this down on paper and I have never once had a discussion about what life would be like for me in the future if I was blind. I mean, who wants to talk about that? Nobody, especially not me. But the reality of the possibility looms in the background.

    There was a time, when my mental state was not good, mainly due to Prednisone. I had plotted to hire a lawyer to get all things in order and I had intended to tell a dear friend that I would be considering taking my own life if I became blind. I didn’t want to live dependently and as a burden. Though I can’t grasp what life would be like for me without sight and I don’t want to think about it, I love my life and the people in it far too much to walk away from it. I intend to live and when I use the word live, I do mean the action of living.

    Yes, I have a blow-up doll, but I don’t have anyone to take care of me. I never really have and I don’t think anyone knows what that looks like because the people who know me know that I just do everything my way and on my own. But when you feel like hell in a pandemic and your brain is defying you, you learn you have to lean pretty heavily on others even when it is hard to ask.

    A few weeks ago, I took my niece out for some chicken wings and to go shopping. I used to always tell her that she has to take me out for pie when I am old, but this time the ask was bigger. I asked her, casually, that if I were to go blind and we had places to go, she would make sure I had nice outfits, and that my hair was combed. I asked that for special occasions, she would put red lipstick on me. She agreed; we discussed it no more and I bought her a big bag of saltwater taffy as a reward for listening to her ridiculous aunt.

    Recently, I was van camping with my friend Christian who invested a lot of time and resources into converting a van into a home. I made him promise that if I go blind that he would take me on a long trip to vineyards all over Washington and Oregon letting me taste all the local wines. He promised and also told me he would describe all the scenery to me as beautiful even if it was a dump.

    In these two conversations, there was an underlying secret agreement. There was an ask for help and a confession of fear. I asked in other words, “if I go blind and it is hard for me to take care of myself, will you promise not to leave me?” It is these conversations that tell me I will be ok no matter what.

    My admission is that I am afraid of going blind. I am very afraid of not feeling well or like my old self again. I am terrified of having to ever be on Prednisone again. But even more so, I am afraid of wasting any more time in this sacred life and body not savoring every brilliant moment and every amazing person.

    I realize this type of statement makes some people want to delete me because they think I a full of shit. Yes, I don’t feel like this every day. I often do things like swear at and curse out other drivers for being in my way, but I am trying to put my sights on what is good…at least while I still have them.

    Visually Impaired Actor and 2nd Grader Karl Seitz From 'This Is Us'

    When The Mighty learned that a member of our community was involved in the final season of “This Is Us,” we jumped at the chance to talk to them about their experience. We are excited to introduce you to 7-year-old Karl Seitz and his mother Katrina. As soon as we connected on our Zoom call, Karl quipped, “Karl Seitz, at your service.” He spelled out his name, making sure I knew that it started with a “K” and not a “C.” He asked my name, explaining that as he is visually impaired, it helps when people introduce themselves to him. After appearing as an extra on “This Is Us” in a previous season and in local plays, the charismatic second-grader auditioned and was cast as 7-year-old Jack Damon/Jack Jr. for season 6 (the show features three visually impaired actors to play the character Jack Damon at different times throughout his life). The production made several accommodations for Karl’s days filming, including having a Braille teacher on set. Fun fact: they used a pack of Braille playing cards in one of his scenes. Karl was born with bilateral Peters anomaly, a rare genetic condition that clouded the front of his corneas and severely limited his vision. Over the last seven years, Dr. Bibiana Reiser and her team at Children’s Hospital Los Angeles have cared for him, checking his eyes monthly. Karl has undergone 21 surgeries, including several cornea transplants, and was able to gain some of his vision. Karl also works with his teachers, visually impaired experts, and therapists to support his continued learning, expand his Braille reading, and so he is an independent cane traveler. One of Karl’s favorite parts about the experience of filming “This Is Us” was meeting and spending time with his on-screen sister Hailey, played by 7-year-old actress Sophia Sawaya. He also liked hanging out in his trailer and “being with all of those famous people.” When asked who was his favorite of the actors on set, he said, “I can’t decide because all of them were fantastic.” His on-screen parents Chrissy Metz and Chris Geere always made him feel comfortable on set. Karl let us know that along with being an actor, he is many things – a piano player, a comedian (check out his joke of the day!), and a cane user. He also enjoys swimming, horseback riding, and singing with the John Mercer choir. He detailed his Perkins Brailler machine and abacus he uses for school, along with the different tips that can go on the end of his cane (marshmallow, ball, and pencil). He also loves spending time with his little sister Kirra, who he describes as “kind of messy.” As for what’s next for Karl, he recently got into the Academy of Music for the Blind, booked a commercial, and looks forward to doing more auditions. This summer, he is excited to show his sister how to swim with a dolphin (something he’s already done) along with hiking up a volcano in Hawaii. Karl, we can’t wait to see wherever your next adventure takes you!

    Community Voices

    I feel like I'm always angry regardless what anything good happens. Some people say they want me happy, but no matter how hard they try, I just feel always angry, I just feel always insufficient, I always feel helpless and powerless. I'm angry that I'm out of control over things in my life, I'm angry I can't keep up my studies because I lack money, I'm angry because I'm sick, because I'm blind, because I'm poor, and because I can't do good enough to people around me. I'm angry because I self sabotage. I'm angry at everything. I'm tired. And many times all I think is to give up and kill myself already.

    5 people are talking about this
    Korrine

    Disability Is Not a Bad Word

    Disability is not a bad word. Able-bodied people are afraid of being offensive by calling people with disabilities “disabled,” so instead, they call us “differently-abled,” “special needs,” “handicapped,” “handicapable,” and more. Each disabled individual has a preference of how they want to identify and what they would prefer people to refer to them as, but many if not most choose to identify as disabled. People need to start teaching their kids to not avoid or be scared of people with disabilities because it sets a bad example. Parents need to stop dragging their kids away from disabled people. If they stare or point, they’re most likely curious and just want to know more about something they see. Maybe it’s not something they see every day, or maybe they go to school with someone like the person they are looking at. Every kid deserves to have friends and people to hang out with, whether they’re able-bodied or not. By making places more inclusive and accessible to everyone, such as implementing universal design, ensuring inclusive education, making social media platforms and content more accessible, employers hiring more disabled people, raising awareness about different conditions, and having conversations about inclusion, equality, accommodations, accessibility, and more, we would be setting a better example for present and future youth. Accessibility should be a reality and something that we actively strive to improve, instead of it being the newest trending hashtag because it sounds “cool.” If you want to be an ally to people with disabilities, learn from the source directly. Reach out to the disabled community to find out what they need, what’s important to them, and what you want to know more about. We are just like everyone else even though we may act, look, or do things differently than what abled-bodied individuals are used to or what the “norm” is. We are capable of living fulfilling lives with reasonable accommodations and support. We need more unity and acceptance. We need more inclusion. People can learn so much about things they may have never previously thought about, or get a new perspective that may broaden their knowledge or awareness about something. Having inclusion and accessibility in society benefits everyone, both disabled and non-disabled. It needs to be the norm, not something we have to constantly fight for. At the end of the day, we are people. We live, we breathe, we love, we laugh, we cry, we are human. We are all human.

    Community Voices

    Trust your body

    Listen to your body when you feel that something is off. Don’t ignore how you feel. Trust your gut.

    For the past few weeks I’ve been experiencing flashing lights in my right eye. I got an emergency appointment with my retina specialist today and he found an Operculated Retinal Hole. He did a laser procedure on it, along with some of my abnormal vasculature of my retina. It was so painful and I’m struggling with a lot of pain in my eye and head all around the area. It will take a few weeks to heal and hopefully seal the hole. Hopefully after the hole is sealed the flashing lights should subside. I have an appointment in two weeks to get re-scanned. I have to rest and take it easy now.

    I was going to wait it out and ignore my symptoms because if everything looked “okay” I didn’t want to waste my doctors time. Ultimately, after my mom and my neurologist persuading me to go, I made an appointment and I’m so glad I did. It’s better to be safe than sorry, and in this case, I was experiencing vision symptoms of an emergency that could and probably would’ve turned much worse had I not gone to the doctor.

    #trustyourbody #LegallyBlind #Blind #Blindness #blindnessisaspectrum #blindnessawareness #VisionLoss #VisuallyImpaired #vision #retina

    Community Voices

    Happy National ASL Day!

    <p>Happy National ASL Day!</p>
    Community Voices

    Hello from Starbucks!

    Hi everyone, I am at a Starbucks near my house. I just joined The Mighty because I have a friend with EDS and she linked a story from here. Anyway, I was surprised severe myopia or even Low Vision was not one of the categories to choose from when setting up your profile. Anyway, I'm glad there's a group for us. I am corrected to about 20/80 and have nystagmus. I have some retina issue and eye randomness that I was born with. I can't see well enough to drive.

    Quick question, does anyone else have issues going to places like Target or any big box store to get glasses? My prescription is -15 and -17 and the person wasn't able to put my prescription into the computer. She'll get her manager to see if there's a certain "YES THIS IS A REAL PRESCRIPTION" button to push on the computer to enter my prescription and finish my order, and they will call me Monday to confirm. But man, I definitely felt like the oddball who is not 'normal' enough to do normal things like drive and get eyeglasses at a regular place, but my eyes are not so severe that I require a cane or anything like that.

    #Blindness #LowVision #myopia

    Community Voices

    I'm new here!

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

    I became hypothyroid 24 years ago, when a medication I never should have been given seriously damaged my thyoid. I diagnosed myself twelve years later; every doctor I'd seen had missed that all-important diagnosis. The main reason doctors miss hypothyroidism also explains how often doctors miss exactly how hypothyroid a patient is. The culprit in this diagnostic blindness, and one of the key culprits in that underestimation in diagnosed patients, is the dogmatic obsession with a pituitary test, the TSH.This nonsense that has harmed countless patients.

    Lately, I've learned a harsh truth that makes me sad and angry: since the beginning (1998), I have never had proper hypothyroidism care, so I've needlessly stayed ill for decades.

    Over the winter, when my health unsurprisingly took a further dive, I finally realized the need to dig more deeply for answers. I began to face having received terribly inadequate care from the thyroid doctor who had treated me the longest. I finally, closely read the lab report I had received last summer, showing the tests run by a much more competent doctor. (Unfortunately, I could not continue with her for practical reasons.)

    That report, plus research discoveries, set me on the right path, however painful it was to face what had happened. A key finding: among other testing blind spots, my main doctor had failed to run four tests to gauge my iron levels. This testing negligence is a big reason that my hypothyroid state and symptoms--including adrenal fatigue--continued. Ironically, my resulting ill health led him to avoid raising my thyroid medication dosage. He thought he was helping by not applying too much "thyroid energy" to my adrenals when, in fact, his inferior treatment had perpetuated my adrenal fatigue in the first place.

    I now see that I compounded the situation by not thinking for myself; I hadn't acted on my growing doubts about his minimal testing and concerns about his questionable treatment priorities.

    Above all, I had not realized the thyroid medication dosage range that is crucial in driving the optimal thyroid hormone blood level that finally resolves "hypo" symptoms.

    So, starting in February, I researched the scientific literature more deeply and pored over the Stop the Thyroid Madness website--primarily the work of Janie Bowthorpe, M. Ed, a highly informed, veteran, hypothyroidism patient who collaborates with many doctors and other patients. Her books (not specified here to lessen the length of this post) are a must for hypothyroidism patients! Over the last two decades or so, STTM has launched what it rightfully calls "a patient revolution against decades of inferior thyroid treatment"!