dyingyoung

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

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

Tomorrow I give a talk to an audience of around 40 to 50 people around the topic of death and depth. I am super excited, but a bit nervous.

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

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

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

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

I am moving into the phase where I need either a power scooter or a power wheelchair, does anybody have advice on which is better? I currently don’t need it full-time, but eventually will. I have issues with my joints, arthritis as well as dizziness that factor into my decision.

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

Due to my complex medical conditions my body is of little used for organ donation, which was my original plan. Instead, my body is going to the University of Calgary for the body donation program where students can learn from it. I am super excited about this as a teacher. Have you thought about what you want to happen with your body when you pass? Did you know in most countries unless you have your wishes in legal documentation your family can ignore your wishes? If you want your body used for organ donation or body donation make sure you look at how to do it properly. Organ donation saves lives and body donation trains future medical professionals (also saving lives), such an amazing gift to give! 💜

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

This actually something I talked to my medical team and Family/friends about a lot. As you know, nature is incredibly important to me and I would like to pass outside. This is so important to me that it is in all the legal and medical documentation. I will not die in a hospital, I will die in my own home if I cannot die outside. We even have a plan for preserving leaves and recording a guided meditation if I cannot physically be outside.

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