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    Aged 12, diagnosed with Type 1 diabetes -23 years later! How different does it feel…

    In April 1999, I started getting extremely ill, getting very tired and loosing lots of weight. After a few days of not really understanding what was happening, I lost consciousness and was rushed to hospital. I woke up in the emergency room, with needles pocking out of my arms, tubes everywhere and doctors and nurses trying to talk to me, but it all felt like a weird dream. I was later told that I had had a diabetic coma and that I was diabetic type 1. My first autoimmune disease: I thought my world had ended. Accepting my diabetes was very hard for me; it took me years before I truly accepted it and let it stop controlling me.

    I will never forget the first doctor who treated me for my diabetes at this hospital in Marbella; he simply had no compassion. When I gained consciousness and my mother arrived at the hospital, he showed me insulin and syringes and told me that I would have to inject myself three times a day and simply walked away. The next morning, I was checked out of hospital although my physical condition was still very poor. I came back home faced with this new sickness I didn’t understand anything about. I knew I had to inject myself and that was it, I didn’t understand why, how, or what was happening to me. Fearing needles since I was a kid, I had panic attacks whenever blood was drawn from me did not help with the acceptance of my diabetes. The first few weeks were a nightmare for everyone, I didn’t know how to inject myself so my mum had to; she would run after me before every injection because I wouldn’t let her touch me.

    We finally decided in June that I should go spend some time in a hospital in Paris where both me and my parents would get to understand diabetes. I went to Paris for 10 days and got educated on diabetes but to be honest understanding what was happening to me made me resent my condition even more.

    The next year and half were complete disasters. I was angry at the world; I couldn’t understand why I was so different. I was outraged that my diabetes required me to be responsible when every kid around me was just the opposite. So, I decided that the best way to express my anger was to self-sabotaging. The clearest way to me was to neglect my diabetes, and that is exactly what I did for a year and half. I wouldn’t do my injections, or I would eat tons of sugar when I wasn’t meant to. This resulted in me ending up in a near diabetic coma in hospital almost every three weeks. The hospital room almost became my second home, to the point where the local joke was that I should decorate the hospital room to my liking as I was spending more time in there than in my actual room.

    At the age of 16, another doctor sat me down and caught on with my self-sabotaging. He calmly looked at me and told me straight up, diabetes today can be very well managed, you can live a very normal life with barely any complications if you decide to get your act together and start taking care of yourself. Or you can continue this self-sabotaging of yours and die a very slow painful death where no one will be able to take you out of your misery. You see the thing is with diabetes, is that neglecting treatment doesn’t cause immediate damage, it takes time, it hurts, and your body slowly gives up bit by bit. That speech changed me and although it took me another 10 years to really start taking care of myself properly, something changed that day and I stopped the conscious sabotaging.

    It took me 10 years to properly understand that diabetes took discipline and that if I incorporated that discipline in my daily routine, the steps I needed to take every day where like brushing my teeth, taking a shower, and getting dressed. It was a matter of understanding that I needed to use insulin to live, to change my eating habits without completely depriving myself from everything and to learn that the more I moved even if it was just walking the better. The day I realized all these things, I realized I didn’t need to fight diabetes, it could become part of my daily routine.

    With that realization came so much peace and came so much gratitude. I finally felt comfortable in my body, I finally felt healthy, and I finally felt like I was in control again.

    23 years on, I almost forget I am type 1 diabetic. Injections are part of my daily routine, eating a healthy diet and allowing myself from time to time to have dessert has never been easier and moving my body to feel better has never felt so right. Had I been well informed and to a certain extent well coached when I first found out I had diabetes, things would have been so much easier. I advise people who first get diagnosed whatever their age, to read a lot about it, to ask their doctors as many questions as they want, to see a good nutritionist that will guide them through carb counting and healthy eating and to get into a sports routine with someone that has a minimum of an understanding of what diabetes is. Doing too much exercise and not eating enough for example is a recipe for a hypoglycemia which is not pleasant at all.

    If I had one wish, is that I had met other diabetic kids when I was younger, maybe that would have helped, and I wouldn’t have taken that long to regain power. If I had had better doctors who instead of forcing information on me, listened to me and had been a bit more understanding it would have also helped. I would have probably not taken so long to gain control of my body. I am extremely lucky 23 years down the line and now with numerous other autoimmune diseases that have been diagnosed, that my diabetes is so well controlled I almost forget I have it. My HbA1c varies between 6 and 7, I have no diabetic complications despite having other serious health problems which is a miracle! And I am grateful that getting diabetes thought me discipline and gave me strength that I may have not gained especially that I have used it to face many other health challenges that came as I got older.

    My two cents on the topic are the sooner you accept something the simpler it becomes. Of course, this is easier said than done, but it’s quite straightforward really, when you don’t have a choice, it all comes down to accepting. #Type1Diabetes #ChronicIllness #AutoimmuneDisease #autoimmune #dailystrugles


    Mystery Night Episodes & My Resolution

    Almost 6 months ago now, in addition to my other chronic health issues, I started having what I can only refer to as “night episodes”. I’ll wake up feeling weird, nauseous, shaky, weak and generally discombobulated. We had originally assumed it to be a hypoglycemia related thing. I took consistent readings of my blood sugar for a while and did a 10-day continuous glucose monitor and neither showed anything abnormal.

    I’ve tried tracking my heart rate, my blood pressure, my temperature. I’m going to see a rheumatologist and a neurologist. But I’m struggling to even describe my symptoms.

    Sometimes my limbs feel disconnected and floaty. Or they’ll feel unnaturally heavy.

    Sometimes my head feels pressurized and floaty.

    Sometimes I feel like my body is filled with bees. They’re not stinging, it’s not painful. But they are buzzing around. And I’d like them to stop.

    Or it feels like my body has been hooked up to a very low voltage power source. Not enough to hurt, barely even enough to shock you if I touched you. But enough that I’m extra aware of so many nerves all at once.

    The only thing I’ve found that helps is heat and food. I will grab a small snack and get under my heated blanket. Then I can usually get back to sleep. Once I get back to sleep, I’m usually okay.

    I don’t get night episodes every night. But some weeks they’re more frequent than the nights I don’t. But they do seem to be connected to my circadian rhythm and anxiety as they’re more likely to occur on nights before I have to work the next day or when I stay up too late (past 10pm) and they have gotten a little less intense as I’ve been working on my anxiety coping skills.

    Some nights have been especially bad though. One night I kept having a head-squeezing paired with the brain equivalent to the feeling in your nose before you sneeze. It would happen at random though the night. I was so scared I was about to have a seizure, which is odd, because I’ve never had one before. But I think it was so close to what I imagine the lead-up to a seizure feeling like. (For those that are aware of the lead up to their seizures anyway.) Then another night I woke up at 5am in a panic. I oriented myself, thought it was odd and tried going back to sleep. Every time from then on when I would get to the twilight phase of sleep, it would happen again. I’d get an electrical tightness across my chest and upper arms, and panic. Then rhythmically, even after I’d given up going back to sleep and got up, I’d feel like someone were taking each of my internal organs and squeezing them. It was discomforting to say the least.

    At this point, I don’t have any answers. I don’t even have good medical terms to describe half of this. But I’m going to keep looking. The flame of hope flickers still. As a song from one of my favorite childhood movies says, “Hope is frail, but hard to kill”. Hope takes a beating. But she rises yet again.

    I am determined. I will pray. I will search. I will be kind to myself. I will utilize my curiosity and be courageous. I will acknowledge my emotions. I will wander this road till I find my way home.

    #Mystery #hashimotos #chronicinflammatoryresponsesyn drome #PostconcussionSyndrome #IBS


    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

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    Wellness Wednesday: Staying Active In The Summer With Diabetes

    Since summer is soon approaching, let’s share some tips about exercising with diabetes!

    ☀️Why Should Physical Activity Be Included In Diabetes Management?

    Being active allows one to maintain a healthy weight and lower cholesterol, as well as lowering stress, improving memory, and reducing the risk of heart disease and nerve damage. When you are active, your body is more sensitive to insulin, which aids in managing diabetes.

    ☀️How much physical activity is recommended?

    According to the CDC, the goal is to get at least 150 minutes per week of moderate-intensity physical activity.

    ☀️Physical Activity Tips For People With Diabetes This Summer

    - Whenever you start a new physical activity program, get medical clearance first.

    - Before, during, and after physical activity, blood sugar levels should be checked.

    - Keep active during the cooler hours of the morning and evening to escape the heat.

    - You could experience low blood sugar from activities like hiking, biking, and swimming if you take insulin or certain diabetes medications. Therefore, monitor your levels during this time.

    - For hypoglycemia, keep quick-acting carbohydrates like sugared candy or glucose tablets.

    - Keep healthy snacks on hand during physical activity, such as trail mix, nuts, granola or fruit.

    - Stay hydrated with water or electrolyte drinks.

    - Depending on your physical activity, wear proper footwear. Avoid walking barefoot to limit the risk of injuries to your feet.

    ❓ What are some summer physical activity tips you would like to share that have helped you?

    Share your tips in the comments 👇🏾

    #Diabetes #DiabetesType1 #DiabetesType2 #lada #mody #prediabetes #GestationalDiabetes #JuvenileDiabetesType1 #DiabetesInsipidus #ChronicIllness #AutoimmuneDisease #Lifestyle #Summer #Exercise #Support #SupportGroups #MightyTogether



    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.

    Jason S. (CoolJay)


    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.

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    Food and Nutrition Friday: Quick Food Options For Treating Hypoglycemia

    Today, we will discuss healthy food options for treating hypoglycemia.

    In diabetes, hypoglycemia is the condition where your blood sugar falls below the healthy range. It can differ for each individual, but is usually defined as a blood sugar level below 70 mg/dL.

    Glucose tablets and glucose gel are the usual treatment options for low blood sugar.

    Although both options are very effective, there are some people who might have an allergy or intolerance to the ingredients, and others simply do not care for the taste.

    Glucagon is another treatment option for hypoglycemia, however, the treatment is not as common as using glucose tablets and gel.

    These are just a few quick food options to treat hypoglycemia courtesy of Healthline:

    🔸Blood Sugar Above 80 mg/dl🔸

    When your blood sugar is above 80 mg/dL but you are experiencing hypoglycemia symptoms, try all-natural peanut butter or any nut butter with no added sugar.

    When your blood sugar is greater than 80 mg/dL, you may be experiencing these symptoms due to rapidly changing blood sugar levels and don't need quick-acting carbohydrates.

    Nut butters without added sugar are packed with protein and fat and can help alleviate these symptoms without raising blood sugar levels.

    🔸Blood Sugar Between 70-80 mg/dl🔸

    If your blood sugar level is between 70 and 80 mg/dL, combine nut butter and a starch like crackers. At this point, your blood sugar is still not low by definition. However, it may be lower than you are comfortable with. In this way, your blood sugar will gradually rise, and the fat and protein in peanut butter will maintain those levels.

    🔸Blood Sugar Between 55-70 mg/dl🔸

    If your blood sugar is 55–70 mg/dL, try the following:

    - Raisins

    - Medjool dates

    - Applesauce

    - Bananas

    - Grapes

    - Pineapple

    These foods are all fresh or dried fruits having a higher natural sugar content than other fruits. Although some fiber is present, it is minimal and will raise blood sugar quickly and effectively.

    🔸Blood Sugar Less Than 55 mg/dl🔸

    If your blood sugar is less than 55 mg/dL, try 100 % grape juice, honey, or maple syrup.

    During this time you need quick, rapid-acting liquid carbohydrates that contain no fiber, fat, or protein.

    If left untreated, severe blood sugar levels can lead to seizures, loss of consciousness, coma, or death.

    You should always consult a medical professional before making any changes to your diabetes management.

    Source: www.healthline.com/health/diabetes/low-blood-sugar-healthy-f...

    ❓What foods do you use to treat hypoglycemia?

    Share in the comments below!

    #Diabetes #DiabetesType1 #DiabetesType2 #lada #prediabetes #mody #ChronicIllness #AutoimmuneDisease #Lifestyle #Hypoglycemia #EatingHealthy #Food #SupportGroups #Support

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    Food and Nutrition Friday: Food Deserts & Food Insecurity

    Today, we’re talking about food access issues and how it affects people living with diabetes. Two of the most common issues are food deserts and food insecurity.

    Food deserts are places where there are few healthy food options for low-income or remote residents. The lack of access to healthy food is a problem that afflicts a lot of people in America and other countries.

    People with diabetes of all ages, including type 2 diabetes, deal with food insecurity which makes it challenging to live an active, healthy life.
    Many counties experiencing food insecurity aren't getting too few calories, but the wrong kind of calories. Usually, the cheapest and most accessible foods (fried takeout, high-sodium prepared meals, candy and soft drinks) provide plenty of calories, but they contribute to higher blood pressure, kidney disease, and diabetes.

    In addition, food insecurity can increase the risk of complications for adults and children who already have diabetes. Skipping meals, for example, can disrupt your blood sugar levels, putting you at risk for hypoglycemia, or low blood sugar (blood glucose). On the other hand, people with diabetes who can only afford unhealthy meals may have more frequent high blood sugar levels, which can raise the risk for long-term complications.

    Food insecurity isn't just a problem in inner cities. Other groups may have a hard time getting healthy food. Small towns and rural areas, for example, have long drives to supermarkets with limited stock.

    People who rely on public assistance to pay for all or part of their food bills may not be able to stretch until their next pay check.

    Another vulnerable group is older adults, who are particularly vulnerable to both food insecurity and diabetes. It's extremely difficult to manage diabetes if you can't afford the right foods.

    Older adults on a tight budget and people with mobility issues often can't get fresh fruit and veggies. Making homemade food from scratch can also be challenging for seniors because of other health conditions.

    Next week we'll share resources for people struggling with food access.

    #diabetes #diabetestype2 #diabetestype1 #prediabetes #chronicillness #autoimmunedisease #food #accessibility #health #healthcare #money #eatinghealthy


    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?


    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!