Hypoglycemia

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    Community Voices

    A Little About Me

    My name is Tonya. I am a chronic illness warrior and am passionate about advocacy. I love to share my story with anyone who will listen.
    I have been featured on my local news station and interviewer for our newspaper.
    I have numerous conditions such as Gastroparesis (g tube, port, gastric stimulator and on TPN) . I have Primary Immunodeficiency and infuse Hizentra. I have Ehlers Danlos, Autonomic Dysfunction and Mast Cell Activation Syndrome. I have Chronic EBV and had an Acquired Hemaphagocytosis due to being immunocompromised and catching Covid-19 earlier this year. I deal with migraines, hypotension and hypoglycemia as well.
    I'm currently writing for a migraine site and volunteer as an Oley Ambassador.
    My goal is to bring awareness of little known things about my conditions. I am always bringing new information to my doctors. They appreciate it.
    I hope to learn from you all and hopefully, you'll gain insights from me.

    #PatientAdvocacy #chronicillnesswarrior #gastroparesisawareness #GulfWarSyndrome

    3 people are talking about this
    Community Voices

    Wellness Wednesday: Staying Active In The Summer With Diabetes

    <p>Wellness Wednesday: Staying Active In The Summer With <a href="https://themighty.com/topic/diabetes/?label=Diabetes" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce7700553f33fe99129c" data-name="Diabetes" title="Diabetes" target="_blank">Diabetes</a></p>
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    Community Voices

    Hello everyone,
    I am a 43 year old malevliving with GP, IBS, Type 1 Diabetes, and Hypoglycemia. I currently have someone helping me 2 days a week with laundry, shopping, and doing things around the house. I can sometimes do things on my own when I am actually NOT in pain. But, most of the time. I am either doing things WHILE in pain, or not doing anything at all. It truly depends on the level of pain I am in. Unfortunately, as of June 16th, i will no longer have someone helping me as the program will be coming to am end. I am going to be looking for a way to get more help after June 16th. Anyway. I just wanted to introduce myself to the group and say that I am very glad I was invited. Hope to talk to some of you more in the future.

    Thanks,
    Jason S. (CoolJay)

    6 people are talking about this
    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

    Food and Nutrition Friday: Quick Food Options For Treating Hypoglycemia

    <p>Food and Nutrition Friday: Quick Food Options For Treating <a href="https://themighty.com/topic/hypoglycemia/?label=Hypoglycemia" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce8a00553f33fe994992" data-name="Hypoglycemia" title="Hypoglycemia" target="_blank">Hypoglycemia</a></p>
    Community Voices

    Food and Nutrition Friday: Food Deserts & Food Insecurity

    <p>Food and Nutrition Friday: Food Deserts & Food Insecurity</p>
    4 people are talking about this
    Community Voices

    Problem with job coach: are autistic meltdowns behavior? #Autism #AutismAdvocacy #nvld #AspergersSyndromeAwareness #AutismMeltdown

    So after the SOS post I did my boss seemed to be fine with me; she told me to forget about that day and to do busy work while I wait for patients to finish eating and even helped me with my worker’s compensation claim for being admitted to the ER for suicidal ideation. I am holding a grudge against the coworker who caused the incident and plan to ignore him. I will never forgive him for the pain he caused and shall act as though he is dead because to me he is.
    Well my job coach came by and talked to me about it last Thursday and now I might need a new one. She told me that my attitude and behavior is what’s causing the problems and I’m a hypochondriac for looking up things about autism and my physiology. She claims I can control my meltdowns and that I fake blacking out. She thinks me disassociating isn’t real and that even when I get hypoglycemic I can control my actions. She also thinks I’m abusing the accommodation system and that texting my mom during our meetings isn’t normal but rude.
    I try to calm down when I feel a meltdown coming on but I get in trouble for leaving my coworkers when I need a breather. I use all the things it says online to calm down but sometimes I just burst from keeping it in. I even try to eat small snacks but some of my coworkers don’t think hypoglycemia is real and tell me to wait. I get overwhelmed and then black out, see myself in 3rd person and when I comeback I cry because I can’t believe I lost control. This only happens frequently at my full time job, my part time job coworkers know my triggers and how to respond to me. My job coach never seemed to educate my managers about my diagnosis and blames me for everything that happens.
    I want to know if my actions are normal for autism/NVLD people and if disassociation is a real thing. How can I educate my job coach about this and should I look for a new job coach and a new job? Is this behavioral or my brain being wired differently?

    5 people are talking about this
    Community Voices

    Thank you.

    Thank you for inviting me to the group. My name is Jason (jay). I'm about to turn 48. I have type 1 diabetes, hypoglycemia, gastroparesis, and IBS. I am also confined to a wheelchair. Feel free to message me anytime and I will answer as quickly as possible. Thanks again!

    8 people are talking about this

    What Bedtime Looks Like for a Medically Complex Child

    Bedtime is never just telling my son, “Good night.” It is administering multiple medications to aid in sleep and to help with the pain. It is starting overnight g-tube feeds to keep hypoglycemia at bay. It is giving tickles down my son’s arms and legs, scratches on his head that he can’t reach because of his limitations and disabilities, and then laughing at something outrageous or funny that he said unexpectedly. It is ensuring there is no shame to be had when my 13-year-old son asks for help with his toileting needs. Once cleaned, it is storytime, and we will read the same Batman comic book as the prior evening because my son is autistic, too, and likes routine. It is hugs on his side until I am about to fall asleep, lying draped over my son, standing upright beside the bed until he is done with me, and I get dismissed to leave. Before turning out the light, my son will remind me not to forget to put on his Bipap and sleeping mask; I will lean down to give him extra kisses for being such a big help and advocate. On the way out, it is checking the closet and underneath my son’s medical bed for monsters, only to be stopped with one foot out the door to engage in a quick conversation about Good vs. Evil and how he will one day change the world. It is dreaming out loud and enjoying the vision. It is a last-minute request for another position change until my son’s legs and dislocated hips no longer bother him, at least for the moment. Then, it is dozing in the recliner outside my son’s bedroom door, just in case. Only to be woken shortly to the cry of, “Mommy, I need a drink!” It is counting down the hours until the nurse arrives in the morning to give me a break while at the same time looking forward to waking up to see the sweet smile on my son’s face when he greets me the next day. It is tiptoeing down the hallway to the master bedroom once my son is finally asleep and then pushing the dog out of my spot on the mattress, followed by a frustrating game of tug-of-war as I wrestle for covers while trying not to wake my spouse up because he has to go to work in a few hours. It is double-checking the alarms on my cell phone so that I don’t miss administering my son’s next dose of meds. It is lying awake going over the mental to-do list inside of my head until I am too anxious to sleep, so I stay awake reading a book or posting on Instagram or Facebook instead. No, bedtime is never just saying good night when you have a medically complex kid, but that’s OK, because in between the hardships and chronic sleep deprivation, we make the best out of our situation and strive to enjoy the blessings.

    Ravone Fields

    Getting Restrained at a Hospital for Eating Disorder Complications

    The last time I was hospitalized for my eating disorder, it felt like the hospital’s only aim was to get me out. I understand why this was the goal. In the past, the hospital has exasperated my symptoms and only made things worse. However, this time things were different — and many things were missed. I was admitted to the hospital with an extremely high heart rate. The doctors were concerned. I didn’t refuse the first nine bags of fluids they gave me overnight because I too was worried about my heart. After medication and fluid, my heart rate still remained high. I was subsequently admitted for tachycardia. Within hours of admission, my sugar dropped so low it could have resulted in serious injury to my life. I didn’t refuse the first several doses of dextrose. (Which is different for me.) Nor did I refuse to stay, which would have required me to get certified and petitioned. I tried to display I was there for help — not to “break or get away.” After many rounds of dextrose, I questioned if anything else could be done, because one, my eating disorder started to get louder as fluids and pure sugar entered my body. (This is normal for eating disorder patients and isn’t a reason a patient isn’t doing well in the hospital.) Two, my sugar was dropping within the hour and the dextrose didn’t seem to be lasting nearly as long as it had in the past. Three, I was malnourished, and didn’t really know what was best for me at the time. Nonetheless, I continued to receive dextrose because of my “refusal or inability to eat.” I was also experiencing these symptoms at home four to five days  prior to admission, which again is why I decided to seek help from medical professionals. On Monday, February 8, after spending the weekend still dealing with tachycardia and hypoglycemia, the social worker came and almost immediately insisted I be discharged because my behavior would only be “exacerbated” if I stayed in the hospital. The nursing staff and I disagreed with this plain at the time because my symptoms where still not under control. I had a hard time walking on my own and because of my low blood sugar and fast heart rate, I actually fell and hit my head quite hard while trying to get myself dressed to leave the hospital. A doctor did not order any kind of scan after this fall, though I clearly had a mark on my forehead from hitting the floor. We spent hours arguing back and forth about whether it was a good idea for me get discharged, and I kept changing my mind. This is also typical of someone with an eating disorder. Sometimes when we start to receive medical help, we look for ways to talk ourselves and others out of it for fear of losing too much control or gaining weight. The flip-flopping for hours wasn’t me being “borderline,” but in fact was my eating disorder screaming for me to leave while I had the chance and continue to starve myself, all while my rational voice was screaming how much I needed medical help. How thin I had become. How I couldn’t even stand on my own two feet. How I felt like my heart was going to beat out of my chest at any second. How I was scared this time. How I really might die because I really am “that sick.” How I truly wanted to do things differently. Over the past few months, my new therapist had started telling me things I never thought about before. Like how complex my eating disorder is. How much it gets in the way of me being able to articulate what I really want or need. I wanted to try and fight anorexia more than ever, but she was also louder than ever. I was able to give up some control and go to the hospital, stay at the hospital. So I felt let down when I was told the hospital “wasn’t the place for me” and that “I would get any better.” What was better? Being sent back to my empty apartment to die alone? After much debating, the social worker wheeled me out to my car and advised me to “pivot” myself to my car from the wheelchair because they weren’t helping me drive in my condition. This is why I refused to drive away. It made no sense to me — if I was too medically unstable to drive my car, how could I walk up my steps or even get out of bed if I made it to my bed. To me, this wasn’t “borderline behavior,” this was me trying my hardest to prove my point. I wasn’t stable enough to care for myself. After I drove off, I lost consciousness fairly quickly and crashed my car. I knew I couldn’t drive. But I had basically been kicked out of the hospital and I wasn’t going to allow myself to stay there another second. I woke up to nurses and doctors screaming and pounding on my window. Luckily after some time, I understood what was happening and opened the door. I was immediately taken in a triage where again my heart rate was through the roof, and I of course couldn’t stand on my own, let alone drive a car safely. I was admitted back to the sixth floor after waiting in the ER for 18 hours. No one seemed to care how this affected my mental health. And after I refused to stay any longer, I was then certified and petitioned and threatened to be restrained if I even attempted to stand up. The same hospital that had discharged me just hours before told me I wasn’t safe enough to leave. (How was this not to confuse me and/or cause my anger?) Back on the floor, my physical health was slowing getting somewhat better, but the doctor still felt my sugar levels were too dangerous for me to be sent home. One day, I apparently became combative and incoherent. I began threatening to rip out my lines and was then put into restraints and given dextrose. (Being combative or displaying abnormal behavior is very common for someone with low blood sugar.) Despite this obvious medical information, and the fact that I had no memory of the outburst I had just displayed after receiving dextrose through a shot, I was still held in four-point hard restraints with one of my arms raised up in the bed for over four hours. Only after I complained because I knew this was against the restraint policy were both of my arms able to be by my side. I had already pulled out my pic line and feeding tube being I was put in restraints, so what more of a threat did I pose? I felt like this was their attempt to punish and control me after everything that had happened. What other conclusion could be drawn? I was immediately calm after being in restraints, but still was locked in them and was even told to “eat” while in four-point restraints for displaying inappropriate behavior during a hypoglycemic episode. Another time, after hearing nurse “discuss” me in the hallway for hours, I decided I was going leave to hospital. The nurses said things like, “The social worker already said this was for her mental health, she shouldn’t even be here, I got a dude dying next door. This is fucking bullshit and I’m not going to deal with her if she is the one refusing to eat.” Please, let’s remember millions of people struggling with eating disorders. This is the kind of attitude that hurts us and prevents us from getting the help we deserve. I felt so discouraged, and like I was taking the space of someone who “really” needed to be in the hospital. All the thoughts of finally getting some help — not “recovering,” but making that huge first step — left my head. I had been eating small amounts. Agreeing to receive things like potassium and magnesium. In the past, I fought these things tooth and nail. I was in fact “doing something different.” When I left, I walked down six flights of stairs before being “tackled” by security and taken back upstairs. See, I was actually getting better this time. A week ago, I couldn’t walk from a wheelchair to my car door. This time I walked down all those stairs and though my heart felt like it was going to burst wide open, I didn’t fall. I was eating little by little and getting stronger. I was trying — until I heard  those nurses talk about me for hours. When security found me I fought to not go back. I just wanted to go home and be left alone. What was I to do if the very people who went to school to help sick people and care didn’t even want me there? I was frustrated mentally from fighting my eating disorder for days and eating food no matter how small a bite. From telling myself I needed the medicine and fluids, the feeding tube. From hearing person after person say how this “wasn’t the right place for me to be helped” and “would only made things worse.” When they brought me back to my bed, I was in restraints for over eight hours. I cried, looked outside and realized it was dark. Memories of the sexual abuse I experienced as a child and an adult flooded my heart. My abuser had tied me down. These memories only got more vivid when I was told my only choice that whole night was to use a bedpan. I promised that I wouldn’t even walk close to the room door. That all I wanted was my hands free. This night caused just as much trauma as the night my abuser actually did what he did. What was different is I kept expecting a nurse or doctor to come in and say, “OK, you can get out.” I knew that wouldn’t happen then with my abuser. But I never thought a hospital that claimed to understand trauma would put me in restraints again for so long just for packing my things and walking down stairs, basically. Of course it wouldn’t happen again. I now had a sitter and all the nurses and security were on high alert. Yet for hours, I laid and cried begging to just be let go so I could get up and pee. Even at one of the most recognize and respected medical facilities, I was ignored and treated with very little empathy. This is why on February 15, 2021 when I knew I would be OK to at least make it home, I signed a paper to get discharged against medical advice. Even though the doctor didn’t feel I was safe to go home, no one said I should stay and not sign the paper. The nursing staff and security seemed quite happy to see me go actually. Despite the numerous times I was told “I would do better at home,” I am not. I’m still struggling to eat food. I am not medically stable. Imagine if I was your daughter, sister, friend, or someone you loved or cared about. As a “medical professional,” would you have wanted me to leave the hospital because I was too much of a headache? Or stay there and potentially get medically stable, then go home and continue outpatient therapy and look for treatment centers? These words have come from my heart. From a heart who maybe wishes she hadn’t left against medical advice and could let words roll off her back. Who wishes more people in the medical field understood anorexia and eating disorders and how much they just kill and destroy. Coming from a socially compromised and diverse background as well, I wonder how my treatment would have differed if I was a white women with insurance presenting with the same symptoms. If perhaps I would have been given the opportunity to be forgiven and start a new stay, instead of immediately being told I was just going to fail. I hope by reading my story, next time you’ll stop and try to be a little kinder to the next patient who has been in ER room 23-26 hours because the social worker can’t find a psych bed. We too matter and have voices just begging to be heard. Thank you for reading.