Mitochondrial Disease

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    Do you get a “ fun hangover”?

    For those of us with multiple health conditions, there is a cost to everything we do, and often we get what I like to call the fun hangover. Do you get one and if so, what do you do to recuperate?
    youtu.be/zHcrHrCn2J8 (this is the link to my video on the topic)

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

    48 reactions 13 comments
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    Waiting for results…

    While I am waiting for results, I am choosing to focus on the joy of spring. The results that have come in are so up-and-down and all over the place. My thyroid is low now, and there is protein in my urine and I am going through periods of exhaustion so bad I can barely move. Tomorrow I will get the CT results for my lungs. Instead of focussing on all that, I am choosing to focus on the birds chirping and the sun shining! I hope everyone has a wonderful day.

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

    26 reactions 7 comments
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    Happy Rare Disease Day!

    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

    27 reactions 5 comments
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    Hello!

    It has been a while since I have posted. There is an odd feeling to surviving. Almost a guilt, because I said my goodbyes, and was at peace with going, but my body was not ready to let go. My best friend ended up calling an ambulance, I was hospitalized for more than two weeks and released. I have been doing a ton of testing since. I have found an amazing pain specialist. Working with a great physiotherapist I got walking again. I am trying to spend as much time as I can with my family, friends, puppies. I am eating good food and playing outside. Pain levels are really high, but I am coping and finding all the joy I can. I am very happy that I get a second chance to find as many silver linings as I can. Life is as always, more good than bad.

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

    80 reactions 19 comments
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    If someone causes us trauma should we forgive them? Keep them in our lives? Cut them out? Are there factors that impact that choice?

    I think there are many factors that impact the choice (are they still hurting you, can you move past, do they accept responsibility and want to change…).

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

    80 reactions 22 comments
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    What are your favourite aids for making life easier?

    I am so fortunate to have so many things to make my life easier. My comfy lift chair, Apple Watch, trike, Medical bed, scoot scoot (my scooter), my accessible bath and lifts are just a few of my amazing aids. What things to you use or hacks?

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

    110 reactions 36 comments
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    Making progress!

    Yesterday was a good day, I had a lovely visit with my friend and wife. I did 15 minutes of stretches, ate a bit more and sat by the window. I then had amazing conversations with several doctors and other staff members. Everyone is working so hard to figure me out. They are not only working together, they are also really listening to me, and treating me with so much respect. I don’t feel rushed or disbelieved or misunderstood. The doctors and staff here actually understand all of my complications and if they don’t, they are not scared to say that they don’t and ask for help from other doctors or medical staff. There are few people trained to understand mitochondrial dysfunction, and I am incredibly fortunate to have my doctor in charge be one of those few people. 

    I am getting better every day and have so much hope. A few weeks ago I never thought there was a chance I would see Christmas, now, I am dreaming of seeing all my people, sitting by the river, going to the zoo, roasting a marshmallow over a fire, and all the other things I am excited to do.

    When I made the decision to come off of all of my medication’s and go for a reset, I knew that the chances were incredibly low that it would work. I also knew I had no other choice, my body was shutting down. It was nearly done when I got here. I did not think that I would make it; those who saw me in the weeks before I was hospitalized thought the same. That picture of me in bed I posted last week was taken by my wife because she was pretty sure it would be the last one ever taken of me. When it was taken I was at the point that I would randomly stop breathing, I couldn’t eat or drink, I couldn’t move on my own, my heart was struggling to beat, I was hallucinating and vomiting non-stop. But my people and my body were too stubborn to give up. So here I am; I’m not better, I will never have “good” health, I will always be disabled, I will not live as long as I would like, and there will always be pain and struggle. But, even more important is that there will be love, joy, laughter, adventure and life! Life is always more good than bad, bring on those silver linings!

    Today is a good day and they will keep getting better. There will be set backs and it is going to be very hard work, but I have never been scared of hard work.

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

    48 reactions 25 comments