raynauds disease

Hello friends! You will notice I change the name of the group, even though the purpose of the group has not changed, I want to focus on the journey and not the destination.

This summer, I really want to continue my outdoor adventures and have as much time as I can with the people I love. What are your summer goals?

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

youtu.be/O9t0GhhjllA

My video on coping with pain and dysfunction.

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

Today is a day of awareness for rare diseases, of which I have a few. For those of you who belong to the rare disease family; Happy Rare Disease Day! 🥳💜

Anyone who wants to know more about rare diseases, click here: www.rarediseaseday.org

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

I had a Raynuad's episode yesterday for the 2nd time yesterday. It was painful and lasted about 15-20 min.

Can any Raynaud's sufferers share their experiences? What helps or hurts? #RaynaudsDisease #RaynaudsPhenomenon #MyalgicEncephalomyelitis

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

Dogs are incredibly smart and empathic. Ben (my big guy) has been able to sniff out my cortisol levels for years and tell me when I need to take more medication. Jones knows when I need emotional support and comes to comfort me. They know when someone in their pack is unwell and dying. Poor dogs have been impacted by my steady decline in health. Ben is stress shedding and losing his fur in massive clumps. They do not want to leave my side and follow me everywhere.Each time I have a health crisis they know and comfort me. They are a huge part of how I have made it this far; through all my diagnoses, Covid, everything… I couldn’t do it without my fur babies. Shout out to all the pets out there. 💜🐕🐾

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