raynauds disease

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    Finding the Joy!

    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

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    An interview with myself and my new Wife

    This is an interview with my partner and I on my health conditions, what our lives are like, having a supportive relationship with someone with chronic illnesses, how we met, dealing with dying and more.

    youtu.be/GTMgXGIel2s

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

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    Pups

    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

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    Bucket List

    As I approach the end of my life my bucket list is important, I revised it this morning, there’s only so much energy that I have. As my partner put it yesterday, I have been stealing spoons (google spoon theory if you don’t know about it) for years and now don’t have many left. Yesterday I went to the zoo with a bunch of my people and it was amazing. 🐐🐘🦁Today is Halloween, one of my favourite days and I have the joy of taking my youngest trick-or-treating. Life is always more good than bad!💜 happy Halloween everyone! 🎃

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

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    Didn’t even realize…

    Didn’t even realize … I couldn’t do it anymore without severe consequences.

    Needless to say I am still struggling to find that balance for myself and what I can handle, be ehh after vs pushing myself farther than I should have because my brain doesn’t understand my body just can’t. Now am severely am / going to be paying the issues over the next week+.

    Went on my first really long car ride OH to SC and back over a span of 4 days. To pick up my daughter from Bootcamp Graduation and Celebrate her becoming a Marine.

    I didn’t have to drive to much which I have kinda figured out I really start having issues after driving an hour and am absolutely drained to nothing after. Every little movement in this car ride just sends shooting pain down my nerves.

    So needless to say I have been gritting my teeth sense Wednesday. So I can actually have a smile on my face and show how proud I am of her and to celebrate with my family.

    So yep…. It’s been a long never ending day the last 4 days and have not slept. On the positive I will be home in 30 minutes and hopefully relax my body.

    #MixedConnectiveTissueDiseaseMCTD #Anxiety #Depression #RaynaudsDisease #RaynaudsPhenomenon #ChronicMigraines #Nervedamage #AutoimmuneAutonomicNeuropathy

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    Almost died… again.

    Yesterday was a really mixed day, I had a great time chatting with and slowly working on stuff on the other side of the house (I just moved in to my new duplex, where I live on one side and my family the other) with my amazing partner and two friends. I am truly blessed to have such great people in my life. 💜

    I have been pushing very hard with both getting my new house ready and getting my old house ready to go on the market to sell it. After my friends left though, my body decided it was time to shut down and I had a pretty scary medical crisis; luckily, my partner is very good under pressure and we were able to handle it. I don’t know though what would have happened had I continued to push today as I have been. 18 hour work days for a healthy person is a lot, never mind in this body. It is hard to accept dying, but dying by wasting away is harder than I thought. My muscles are eating themselves and my bone mass is going as well; my ankle foot orthotics, knee braces and ring splints don’t fit anymore because I am literally wasting away. I just touch something and my skin bruises and tears. My parts don’t stay in place (Ehlers Danlos); my fingers/toes/ribs/knees/hips sublux daily. My bloating is so bad that my skin/tissue is tearing on the inside. My pain is chronic and getting more intense. My heart and lungs are struggling and declining in function. That is just a sampling of all that my body is serving up. My body is saying no thank you and that sucks. I am stubborn and still want to do all of the things that I used to be able to do, but I can’t, and when I try, the consequences are very real. Deadly real. I want to enjoy this beautiful new home I have for as long as I can get. Years, not days. So I have set out a plan to use timers to take breaks and have people holding me accountable.

    As always, life is more good than bad. Despite all of the challenges, I consider myself incredibly lucky. I have amazing people in my life, awesome dogs, I am surrounded by beautiful nature, good food, great books, and new adventures to be had.

    Thank you to all of you have chosen to follow me on this difficult journey, I know it’s not easy. I feel so blessed and loved. 💜

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

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    In a really bad head space right now.

    Does anyone else ever ask, what karma am I repaying that I deserve this. #MixedConnectiveTissueDiseaseMCTD #RaynaudsPhenomenon #RaynaudsDisease #Anxiety #AnxietyAttack #Depression #Migraines #supportneeded

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    Does anyone know what to expect after starting IVIg transfusions? I start them in two weeks.
    Two days back to back for 4.5 hours per day for procedure. Once a month.

    #FreakingOut #MixedConnectiveTissueDiseaseMCTD #RaynaudsPhenomenon #RaynaudsDisease #Migraines #Anxiety #Depression #Arthritis