dying

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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

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    Hail Mary Pass

    I had a better day, no vomiting and ate more food.
    I did medical research and planning most of the day, So… my Hail Mary pass may have worked. My friend who used to be a nurse and Christy, my wolf did some medical research and found the symptoms of steroid poisoning and I fit all of them. She even contacted her endocrinologist and told her my symptoms, dosages, etc and she confirmed that is a likely diagnosis. This endocrinologist contacted mine today asking why he prescribed such a high dose (we will see what comes of that). Unfortunately a lot of damage is done and I will likely need a pacemaker, it may more than a year to walk again, I may have cataracts, my gut flora will need at least 1 year to re-build and lots of other things to be figured out, a 2 year process. But there is hope! Until I get all my medical appointments and a plan in place I need to be super careful and conserve energy. I am at a really high risk of a cardiac event, so I need to not be Chris and try to do it all. As you know I was reducing my medications and my highest pain levels were when I went off steroids (I had all the symptoms of steroid withdrawal). I have never experienced that kind of pain before, multiply child birth by at least 5x. I have re- introduced 20mg of Cortef (the recommended dose). I was on 50mg of Cortef, plus Dexamethasone 1.5 mg ( equal to 38mg of Corticosteroids) 68mg higher than recommended, this doesn’t even include the other steroids I took for my puffer, nasal rinses and occasional creams. Now, I do have 2 metabolic dissorders, so I do burn through medications faster, but not so fast to increase the dosage so high. I am trying to figure out a treatment plan and hoping I don’t pass in the meantime. I can’t believe that I actually got my Hail Mary pass! Please send good energy my way and cross all your fingers and toes!

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

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    A great birthday celebration

    A great birthday celebration for my now 9 year-old.🎂💜 I made him black forest cake cupcakes, and we ordered pizza and hamburgers, played Mario kart, he made cotton candy with the machine he got for his birthday, played with Lego, and we played Jurassic Park chess (my gift to him) … it was a good day. I also got to cuddle my partner, new wife, in the morning, which was absolutely amazing.

    He asked to go back to his other mom‘s house to sleep, he’s coming back this morning, but he’s scared. He is scared that I will pass in the night while he is there. Understandable, but sad when even your nine year old can see how close the time is. I’m telling my body to hold on a little longer… I still have a few things left to do. 🤞

    Life is still so much more good than bad. So blessed that I had yesterday with my son and today I am doing a chosen family Christmas celebration.

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

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    Heart Failure

    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

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