Mast Cell Activation Disorder

Join the Conversation on
Mast Cell Activation Disorder
8.2K people
0 stories
1.2K posts
  • About Mast Cell Activation Disorder
  • Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
  • Explore Our Newsletters
  • What's New in Mast Cell Activation Disorder
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post
    See full photo

    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

    Post
    See full photo

    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

    Post
    See full photo

    Why I know I am Dying

    People have been asking exactly what is going on medically and how I know I am dying… so here goes a bit of an explanation. I am extremely complex, as such no one can say exactly what I will die of or when. Unfortunately, it’s not like cancer where there are many cases that can be drawn from to predict outcomes more easily. I don’t list all my medical conditions, hence the …, but if you want to know more I am an open book.

    Factor 1, endocrine: most of my endocrine system is shut down; I produce few hormones. I don’t make the key ones like Cortisol, testosterone, ACTH, estrogen, etc., this means my body cannot regulate itself. (When an average person experiences physical or emotional stress their body produces more cortisol, mine cannot do this and if cortisol is not produced the body goes in to shut down and eventually coma and death). This puts me at high risk for dying from adrenal crisis. This is most likely what I will pass from.

    Factor 2, genetic: I also have genetic conditions (mitochondrial, Ehler’s Danlos, Carnatine deficiency…). Your mitochondria are the building blocks, so I have bad building blocks to start with. Ehler’s Danlos effects your connective tissue, so basically I am built with bad glue that no longer holds me together and carnitine is your energy, so my body is losing fuel.

    Factor 3: autoimmune conditions (Premature ovarian insufficiency, Raynauds, celiac…). My premature ovarian insufficiency caused my endocrine system to start shutting down and conditions like Raynaud’s and Celiac disease put extra stress on my body causing other conditions to worsen.

    Factor 4: medications; I take over 100 mg of steroids a day and those have caused my liver to stop functioning properly; I have steroid induced myopathy (my muscles are wasting away), they caused my Ehlers Danlos to speed up, which has caused my tendons/joints to break down faster, they have also caused bone issues so I fracture very easily. There are also several other side effects from other medication that I have taken, such as gastrointestinal issues that put a great deal of stress on my body.

    Factor 5: other medical conditions. My bleeding disorder makes it so I bruise/bleed very easily and puts me at risk for internal bleeding. Add to that my Asthma, Mast Cell Activation Disorder (masts cell allergic reactions daily, risk of anaphylaxis…), osteoarthritis (increased pain levels and decreased physical function) and postural orthostatic tachycardia syndrome (This is a condition that impacts my entire body; from digestion, to breathing, to heart rate, to temperature regulation; it is a dysregulation of the entire orthostatic system).

    My body is a spicy disaster. I have been holding myself together through sheer willpower and stubbornness basically. Lol. Those of you that know me, know that for the past almost 5 years, since my diagnosis I have been pushing very hard to find a unifying diagnosis, basically this is a diagnosis that can tie everything together. As far as we can tell, this doesn’t exist. I was just dealt a shitty hand of multiple medical issues that don’t play nicely together. I have managed my conditions by being my own advocate, doing extensive research and setting my life up to be as optimal as possible. Using exercise, diet and any other tool I could to find the optimal functioning for my body. Unfortunately, my body just reached a point where no matter how much medication, good food, daily exercise and positive attitude I have it is just tired and breaking down. Some people have asked how I know I am dying if doctors can’t predict an exact cause or date. First, I must say that gaslighting, questioning what someone knows about their own body and medical conditions is not cool, even when it comes from a place of care and concern. Second, I am a very well educated person who understands medical research very well and uses empirical evidence like scans, bloodwork, X-rays, the visual signs such as twisted bones/bruising, etc. to make decisions and draw conclusions. I listen to my medical professionals and care team. I also draw off of those people in my personal support team and their observations (some of whom have medical training). I do not say I am dying lightly and it is not “giving up”, it is knowing I am at the end and instead of spending that time fighting the inevitable I choose to spend my time finding joy and peace. Life is always more good than bad and I am going to find my bliss to the very end! Much love.

    Chris

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

    Post
    See full photo

    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

    Post

    This Thought Has No Title

    I have recently joined the Mighty. I have read so many, beautiful, heart wrenching posts of amazing beings who are suffering with so much courage and grace. I think I have nothing that is that bad. I have a home, enough food, a spouse who loves me dearly, 3 rescue cats who bring joy. Yet, I am very ill. And it’s getting worse.

    These past weeks have been, well, Hell.

    I have Ehlers-Danlos hEDS, Hypopituitarism causing adrenal insufficiency, a type of Dysautonomia that makes my body’s sympathetic nervous system constantly dump adrenaline into my body, along with the flushing of Mast Cell Activation Syndrome at the same time. My vision is going. I can’t drive, very hard to read, write, no movies, very light sensitive, severe ER Migraines, and more. Just doesn’t end. I haven’t slept in I don’t know how long, because of the adrenaline surges 24/7. I have collapsed every day the past week from the BP drops, now without warning. Nausea every day for years. I have had health issues all my life, but milder, so I fell under the radar and many doctors were cruel, or insensitive, a couple almost killed me with their treatments, or lack of. PTSD, from repeated childhood sexual, physical, emotional abuse, and medical traumas. A lot of therapy over decades.
    I was diagnosed just under 2years ago with EDS 2 days before my 60th birthday. Already had everything else, but the Mast Cell.
    It’s like the genetic dam just broke and my life as I knew it was swept away. I was a writer, artist, horticulturist, clinical hypnotherapist, Energy Healer, all gone. I kept hoping to heal. It got worse. I have been practicing meditation for a couple of decades, but lately the adrenaline surges are so severe I am struggling with that. Go figure. I am trying different meds cautiously, as I am extremely sensitive. I am just plain overwhelmed and exhausted. I cannot handle any stressors on my body or mind, it just shuts everything but the adrenaline down. Seems adrenaline is the one thing I have an over abundance of, but it’s taken a serious toll. I did try to end it a week ago, because I felt I was of no use to anyone, couldn’t stand just one more moment of physical or emotional pain. How can I give to others the way I used to when my very being is so depleted and I can’t even get it managed?
    I haven’t given up. Still here. Hard to do this writing and reading because of the vision impairment, so I haven’t been able to contribute much here, and I am sorry. I hope someone can understand. Just in a really low place trying to claw my way back out. Thank you all for the share. I am grateful.

    Post
    See full photo

    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

    Post
    See full photo

    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

    Post

    Really Rough Day

    Having a really rough day. I got triggered pretty bad yesterday. And I haven’t been feeling well. Found out I have Mast Cell reactions (which was great finding out cuz it’s finally an answer after a full year of hell and the treatment is helping but it’s still hard) and my body is so tired and inflamed.
    Needing support I guess. My husband is trying his best. My mom is… inept at mental health at best, a bit hostile at worst. And my poor babies (my kitty and puppy are my kids) are having a horrible time with their own anxiety and depression and I don’t know how to help them. It’s all just… a lot. Especially when I’m allergic reacting to everything. 😓😥
    #PosturalOrthostaticTachycardiaSyndrome #AutonomicDysfunction #LymeDisease #MastCellActivationDisorder #SuicidalThoughts #Depression #Anxiety #MightyPets #Migraine