dyingyoung

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    Things that bring you joy

    yesterday my little human and I spun poi, this is a way of dancing with weighted, and in my case lit on fire balls on chains. This is something that brings me a great deal of joy and something my son really enjoys doing with me. He asked me how I would be able to do this in a wheelchair, we talked about how there will be somethings that I won’t be able to do once I am in a chair. At first he was sad, but then his face lit up and he said you can still do flags and fans from a chair. I sat in my walker and we figured out how I could still do poi, just not fire poi, lol. So proud of how my little human is so much like his mommy and always finds the silver lining. I am going to keep doing these wonderful things that bring me joy! What brings you joy?

    #Abunchofrarediseases #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #PTSD #FunctionalNeurologicalDisorder #Migraine #Asthma #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma #RaynaudsDisease #Arthritis #Rarebleedingdisorder
    #MentalHealth #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #DistractMe #dying #dyingyoung

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    Catfishing

    Please be careful with whom you message, there are many catfishers (people who chat you up to try and get money, gift cards, etc. from you by pretending to be your friend or romantic interest) on here trying to take advantage. Some key indicators that they are cat fishing is they ask where you are from within the first few messages and if you look at their profile there is very little information or responses to posts. This was my most recent from this morning, I get these messages daily, mostly I ignore them and block people, but today I was feeling a little feisty. To all you cat fishers reading this, get a life and a real job!

    #Abunchofrarediseases #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #PTSD #FunctionalNeurologicalDisorder #Migraine #Asthma #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma #raynauds #Arthritis #Rarebleedingdisorder
    #MentalHealth #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #DistractMe #dying #dyingyoung

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    What tools do you use to help make your life better?

    In this picture are four tools that I use to help make my life better. There is my Grumpy Bear stuffed animal that I sleep with (he is a gift from my partner and provides me comfort), there is my FocusCalm headband (this is to do Neurofeedback and helps me with my cognitive decline and daily meditation), there is my CPAP machine (which helps me breathe at night) and my medical bed that allows me to adjust my position to get my best sleep possible. I have so many other tools that I use, from mobility aids to splints/braces, arthritic kitchen tools, compression socks… SO many things to make my life easier. What do you use? Is there anything you have found that is an epic fail?

    #Abunchofrarediseases #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #PTSD #FunctionalNeurologicalDisorder #Migraine #Asthma #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma #raynauds #Arthritis #Rarebleedingdisorder
    #MentalHealth #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #DistractMe #dying #dyingyoung

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    Pride was amazing!

    There were tens of thousands of people, the parade took over an hour and it was amazing! Even in the festival area, surrounded by thousands I felt loved and supported and comfortable. There was a disability viewing area where I could get up nice and close, but feel safe. So lucky that I had my crew with me as well. An amazing day! Now for a recovery day. 😊

    #Abunchofrarediseases #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #PTSD #FunctionalNeurologicalDisorder #Migraine #Asthma #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma #raynauds #Arthritis #Rarebleedingdisorder #MentalHealth . #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #DistractMe #dying #dyingyoung

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    Happy Pride! 🏳️‍🌈

    Today is the pride festival and parade, I am so excited to go surrounded by my amazing partner, youngest son and some awesome friends! I am also anxious; this is the first time many people will see me in my respirator, with my bracing and wheelchair. Most people don’t realize I have social anxiety because I have learned to hide it well… Covid and my health has added a layer to that anxiety, so being around thousands of people is a little daunting, but I am really looking forward to seeing all the people and feeling my pride! Living and loving each day to the fullest. 💜🏳️‍🌈

    #Abunchofrarediseases #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #PTSD #FunctionalNeurologicalDisorder #Migraine #Asthma #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma #raynauds #Arthritis #Rarebleedingdisorder
    #MentalHealth #Depression #Anxiety #chronicpain #ChronicIllness #Disability #DistractMe #dying #dyingyoung

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    Goal Accomplished! Celebrate those wins! 💜

    For the month of August I was participating in the great cycle challenge, my goal was to ride 400 km on my trike to raise $500 to fight kids cancer. I met my goal! I rode 454 km and raised $503. My trike rides are one of my favourite parts of my day, but they also come at a cost in terms of pain and muscle strain, so worth it though!

    Yesterday, someone very close to me asked why I wouldn’t just not wear my respirator (I wear a medical respirator to be around other people) and let myself die, why I would want to stay alive with all of my health complications and chronic pain. That hurt deeply, this ride challenge, all of the things that I can still accomplish is why I push every single day to stay alive. Tomorrow I host my book club, Sunday I go to gay pride, next week I am giving a talk in front of 50 people about dying in your 40’s and why it’s not as bad as one might think, I have a YouTube channel, I moderate groups on here, I help former students, I have adventures with my family/friends/pups, I have so much living left to do! As much as I can fit in the time I have left. Even if that is less than five years, that time can still be amazing… even with exhaustion and pain! There is always a silver lining and always more good than bad in life. So instead of focussing on the gaslighting and hurtful comments, I choose to focus on my wins and accomplishments.

    #Abunchofrarediseases #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #PTSD #FunctionalNeurologicalDisorder #Migraine #Asthma #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma #raynauds #Arthritis #Rarebleedingdisorder
    #MentalHealth #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #DistractMe #dying #dyingyoung

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    Is there a food that feeds your soul?

    I have a tradition, every Monday I watch RuPaul‘s drag race and eat popcorn. I come up with creative new flavours each week and I love both eating it and making it! This week‘s favourite was s’more popcorn. What food feeds your soul?

    #Abunchofrarediseases #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #PTSD #FunctionalNeurologicalDisorder #Migraine #Asthma #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma #raynauds #Arthritis #Rarebleedingdisorder
    #MentalHealth #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #DistractMe #dying #dyingyoung

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    I just got the paperwork, I officially get position of my new home September 30!

    For those of you following me know that this is a huge deal! I have been declining quite rapidly physically and my new home is custom built for my disabilities!

    My current home is not very friendly and I have injured myself many times and almost injured myself many more. Getting into my new home is literally life extending for me! So excited, but nervous for all the work ahead. This home is my best chance for a few more years. 😁🏡💜

    #Abunchofrarediseases #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #PTSD #FunctionalNeurologicalDisorder #Migraine #Asthma #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma #raynauds #Arthritis #Rarebleedingdisorder
    #MentalHealth #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #DistractMe #dying #dyingyoung

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    What is a silly thing you have done that has had big consequences?

    I was having a lovely trike ride yesterday morning, then I decided to have a snack by the water and had to go pee. All was well until I peed on what I realized was a wasp nest. A bite on my ear, arm and a leg (one was trapped in my pants) has left me feeling like crap. Luckily, no anaphylaxis, but some lovely swelling. Took some extra meds, but every joint hurts, my teeth even hurt, lol. Moral of the story… look where you pee outside… wasps don’t like you to pee on them. 😂

    I laugh, but yesterday and this morning are very rough. My pain levels were and are incredibly high, my POTS, Raynaud’s, Mast Cell and Addison’s are all triggered… Sigh, don’t mess with mother nature!

    Have you done something like this that has had big consequences?

    #Abunchofrarediseases #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #PTSD #FunctionalNeurologicalDisorder #Migraine #Asthma #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma #raynauds #Arthritis #Rarebleedingdisorder #MentalHealth #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #DistractMe #dying #dyingyoung

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