dying

#ctpsd #BPD #Trauma 👽👽👽👽👽👽👽👽👽👽👽👽👽👽👽👽👽👽👽👽👽👽👽👽👽👽👽👽 Let's see if you could be me.I need you to imagine having borederline personality disorder and living in a world where nothing makes sense and you have very little understanding of the human race because you don't believe how people treat each other matches your internal content of what you believe to be right, just, moral. Also imagine you feel everything a thousand fold of the rest of the world and that not only do others hate you for it but you hate yourself for it too. Imagine growing up ostracized, neglected and never being socialized. Could you imagine the loneliness?Confusion?Fear of people? Living off of hope alone? Wondering if there's even 1 person on earth like you? Broken like you? 🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹

Could you imagine 37 years of people leaving you? Using you? Rejecting you without ever knowing why? Can you put yourself in my shoes of "existing with the pain" instead of living a life? 🧬 🧬 Doesn't sound so good does it? Being afraid of life because you don't know how to live it. Wanting the pain to stop but being afraid of death. Hoping that one day someone will meet you, actually see you and like or love you? The love you see everyone around recieve. Praying to a god you don't believe in per se so hard to send you an angel to save you because simply don't have anywhere to belong? A life always on the outside looking in? Regretting you were ever born? Never understanding "why"? Can you picture it? Comprehend the low quality of life?💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙

Now can you imagine how things could ever get worse? That a time would come where your past trauma's were a picnic compared to what life is about to put you through with zero warning of just how awful people can truly be? Blindsided completely. Targeted so intensively that you believed God must be real because he really did send you the "angel you prayed for?“🖤🖤🖤🖤🖤🖤🖤🖤🖤🖤🖤🖤🖤🖤🖤🖤🖤🖤🖤🖤🖤🖤

Social phobia disorder, BPD and for f*** sakes now diagnosed with C-TPSD in adulthood is my story💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔

NO MATTER HOW PAINFUL TODAY IS TAKE MY WORD FOR IT, THINGS CAN ALWAYS GET SO MUCH WORSE THAN YOU COULD EVER KNOW. SO BE GREATFUL FOR EVERYTHING YOU DO HAVE EVEN IF IT DOESN'T SEEM LIKE MUCH IT COULD ALWAYS BE TAKEN FROM YOU 💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔💔 #kmn #why #Evil #dying #Loss #changed #nothingness #stolen #grooming #unfair #alone

That's how I went from living with BPD to something far far more painful.🪦🪦🪦🪦🪦🪦🪦🪦🪦🪦🪦🪦🪦🪦🪦🪦🪦🪦🪦🪦🪦🪦🪦🪦🥀🥀🥀HERE LIES THE ME I USED TO BE🥀🥀🥀

I am at a palliative care unit with a lady from church. I don’t think she will see another day out. It is such a privilege to be with someone when their life journey is ending. Trivial things don’t matter and what does matter is crystal clear.

The nurses are amazing and so gentle. It’s time for this dear warrior to relax into the arms of Jesus. No more pain. No disappointment. She has run her race with dignity.

youtu.be/BU1bvUeyfvk

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

Wishing everyone a wonderful holiday! I hope you find peace, joy and laughter. Sending love and hugs to you all! 💜❄️☃️🎁

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

youtu.be/ftDXuBEigEI
This is a video with my health update.

My puppies say “hi! Happy Winter Solstice”!

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

Some people have been asking for a video with my philosophy, something to watch after I have passed…
youtu.be/Kbx46Vep8j0

Much love and I hope everyone has a great sleep.

Chris

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

I think I am entering into the endgame at this point. Heart failure seems like the most likely cause. Tomorrow is my youngest‘s ninth birthday, so I need to make sure I hold on a few more days. It sucks that it’s the holidays right now, and no matter what I am going to pass close to special days for people. I just hope that they can remember the good and not have it be something that reduces their enjoyment. That would be very sad because I absolutely love the holidays! I am excited to celebrate his birthday with him tomorrow.

Health Update
youtu.be/nb1X_Hir7nI

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

The night before last, I had a very rough night, I was in so much pain. I literally woke up mewling like an injured cat. Yesterday, despite the pain, I decided to go out with a friend and had such an amazing day! I saw the sunset from the top of the Calgary Tower (a 620ft high rotating tower) and then we went to see the large Christmas tree outside. Right now, much of my support system is isolated with Covid, and I am unable to see most of my family or friends (including my new wife, son, parents…), except virtually, and I’m so grateful for those who have stepped up to help out. Thank goodness for my people, my pets, good books, and good food! Life is always more good than bad, and even in the hard times there’s much joy to be found!
#Abunchofrarediseases
#AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome
#PTSD #FunctionalNeurologicalDisorder #Migraine #Asthma
#CeliacDisease #MitochondrialDisease #Trauma #RaynaudsDisease #MentalHealth #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #DistractMe #dying

People have been asking exactly what is going on medically and how I know I am dying… so here goes a bit of an explanation. I am extremely complex, as such no one can say exactly what I will die of or when. Unfortunately, it’s not like cancer where there are many cases that can be drawn from to predict outcomes more easily. I don’t list all my medical conditions, hence the …, but if you want to know more I am an open book.

Factor 1, endocrine: most of my endocrine system is shut down; I produce few hormones. I don’t make the key ones like Cortisol, testosterone, ACTH, estrogen, etc., this means my body cannot regulate itself. (When an average person experiences physical or emotional stress their body produces more cortisol, mine cannot do this and if cortisol is not produced the body goes in to shut down and eventually coma and death). This puts me at high risk for dying from adrenal crisis. This is most likely what I will pass from.

Factor 2, genetic: I also have genetic conditions (mitochondrial, Ehler’s Danlos, Carnatine deficiency…). Your mitochondria are the building blocks, so I have bad building blocks to start with. Ehler’s Danlos effects your connective tissue, so basically I am built with bad glue that no longer holds me together and carnitine is your energy, so my body is losing fuel.

Factor 3: autoimmune conditions (Premature ovarian insufficiency, Raynauds, celiac…). My premature ovarian insufficiency caused my endocrine system to start shutting down and conditions like Raynaud’s and Celiac disease put extra stress on my body causing other conditions to worsen.

Factor 4: medications; I take over 100 mg of steroids a day and those have caused my liver to stop functioning properly; I have steroid induced myopathy (my muscles are wasting away), they caused my Ehlers Danlos to speed up, which has caused my tendons/joints to break down faster, they have also caused bone issues so I fracture very easily. There are also several other side effects from other medication that I have taken, such as gastrointestinal issues that put a great deal of stress on my body.

Factor 5: other medical conditions. My bleeding disorder makes it so I bruise/bleed very easily and puts me at risk for internal bleeding. Add to that my Asthma, Mast Cell Activation Disorder (masts cell allergic reactions daily, risk of anaphylaxis…), osteoarthritis (increased pain levels and decreased physical function) and postural orthostatic tachycardia syndrome (This is a condition that impacts my entire body; from digestion, to breathing, to heart rate, to temperature regulation; it is a dysregulation of the entire orthostatic system).

My body is a spicy disaster. I have been holding myself together through sheer willpower and stubbornness basically. Lol. Those of you that know me, know that for the past almost 5 years, since my diagnosis I have been pushing very hard to find a unifying diagnosis, basically this is a diagnosis that can tie everything together. As far as we can tell, this doesn’t exist. I was just dealt a shitty hand of multiple medical issues that don’t play nicely together. I have managed my conditions by being my own advocate, doing extensive research and setting my life up to be as optimal as possible. Using exercise, diet and any other tool I could to find the optimal functioning for my body. Unfortunately, my body just reached a point where no matter how much medication, good food, daily exercise and positive attitude I have it is just tired and breaking down. Some people have asked how I know I am dying if doctors can’t predict an exact cause or date. First, I must say that gaslighting, questioning what someone knows about their own body and medical conditions is not cool, even when it comes from a place of care and concern. Second, I am a very well educated person who understands medical research very well and uses empirical evidence like scans, bloodwork, X-rays, the visual signs such as twisted bones/bruising, etc. to make decisions and draw conclusions. I listen to my medical professionals and care team. I also draw off of those people in my personal support team and their observations (some of whom have medical training). I do not say I am dying lightly and it is not “giving up”, it is knowing I am at the end and instead of spending that time fighting the inevitable I choose to spend my time finding joy and peace. Life is always more good than bad and I am going to find my bliss to the very end! Much love.

Chris

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