raynauds

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    A few more wedding photos

    Here are a few more photos from my beautiful celebration of love with my partner. Such an amazing day with family and friends. Unfortunately, I am paying a heavy toll for it. My pain levels are incredibly high, deeply impacting my sleep over the last few nights. It was so worth it though, and I wouldn’t change a thing. I just wish the pain could settle out now. LOL.

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

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    Grateful to be able to cross off my bucket list

    I thought I would just share some pictures, I am so grateful for all of the people, animals and things that I have in my life! I have been able to cross off so many things on my bucket list. I have been to the science center, the Philharmonic, the opera… baked/cooked yummy food, spent time with my people. On Sunday I have my celebration of love with my amazing partner. My life may be cut too short, but it is full of so much joy that I feel like I have lived a lifetime already.

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

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    The realities of Dying

    I post a lot about the positives and those are very important, but I think it is also valuable for me to share some of the struggles as well, as that is a part of this journey. I have carefully cut out all supplements and 3 prescription medications, working towards a medication re-set. These pictures show how my body is breaking down; my skin tears and my vessels in my eyes burst, I just have to brush my skin against something for bruising/petechiae or cuts to occur and pain levels are very high. I have doubled my Tylenol arthritis. I am exhausted all the time. My heart and lungs are struggling and I have been going into shock if I try to do too much physically. That said, I am so grateful for all the people, pets and tools I have to make this easier. I am going to be in pain regardless of what I am doing, or where I am, and life is still overwhelmingly more good than bad, so I am enjoying all of the adventures that I am going on, big and small. They may not look the same as they would five years ago, or even five weeks ago, but they are amazing and life is still so good.

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

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    Pain levels were extremely intense yesterday and the past few days; yesterday was also the last time I will ever be able to do the stairs going into the basement. 😬 The pain stairs cause me now is nausea and tear inducing, which means I can no longer tuck My 8 year-old into bed at night. 😞 We can cuddle and read on the couch, but walking gets harder by the day and stairs are exhausting and excruciating. This body is struggling, but I am finding ways to adapt. I still had an amazing day, cooking and getting outside, playing games and watching a movie with my youngest and partner.
    🎥🍿
    I absolutely could not do it without my team of family and friends that support me in every way possible. I am so grateful and blessed. Checking off things on my bucket list every day. 💜

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

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    Engaged. :-)

    Today I proposed to my partner and she said yes! I created a board game and “accidentally” dropped a card that said will you marry me. It was a great day. I just wanted to share my joy. I hope everybody has a great night.

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

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    Slowing down

    Things that I could do a month ago I can no longer do. I used to hike mountains and repel down waterfalls and now walking 10 feet is a struggle. My body is shutting down and that sucks. My pain levels have been incredibly high, yesterday they were at a 14. My brain is struggling, lol, you can see from the picture I put my chips in the fridge drawer and the honey in the freezer. 🤣 That said, I am so lucky to have all of the amazing things that I do in my life. I have a partner that is willing to push me through the snow in a wheelchair so I can go down to the river and massage my feet and basically love me so well I couldn’t ask for more. I have adorable dogs and friends who make me wonderful gifts like a silly portrait of my one dog, and beautiful children and a wonderful home. I have friends that throw me parties and help me cross all the things off my bucket list. I have former students who made me a beautiful video of their memories of me. Life might be too short, but it is filled with such joy, and as always, life is more good than bad. 💜

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

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    Hail Mary Pass

    I have not used pain medication in the last seven years, because of my conditions and other medications it is very complicated to use pain medication, with the exception of Tylenol. So I have been saving it for when I really need it and yesterday I really needed it. A combination of Tylenol, a bath and muscle rub has helped bring my pain down to a more tolerable level, but still extremely high. 😣

    My body is struggling, my bloodwork shows this, but ultrasound can’t explain why or how. I have seen over a dozen specialists, run all the tests, tried all the things. I have handfuls of endocrine, autoimmune and genetic disorders (all diagnosed by rigorous testing and amazing doctors) and they just don’t play nice together. Today I was offered hospice care, I declined; I have a beautiful home and an amazing support system. 🏡👪

    I am going to try one more Hail Mary pass and go off all medications except my steroids, then try reducing my steroids… and see if I can’t re-set. Lol, like a computer, when all else fails shut off the power and see if it re-boots. Anyone else thinking Jurassic Park? 🤣🦖

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

    Question
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    What kind of tools do you use to track your Health data?

    I use my Apple Watch/phone as my main way to track my health data (lol, yes, the data in the images is mine), but I also use a peak flow monitor, data from my Neurofeedback system, blood pressure monitor, data from my CPAP machine…

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