Hypopituitarism

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    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

    I’m new here!

    Hi, my name is bthelight. I'm here because I want to do something positive and healing for myself and others who share the EDS diagnosis. To learn from and share with.
    I have hEDS, Mast Cell, and Dysautonomia. I also have another rare illness called Hypopituitarism which has caused my adrenals to stop making cortisol resulting in secondary adrenal insufficiency. To top it off I am a Sensory Processing Sensitity being. I like quiet and less busy environments. An introvert, who has learned to advocate for myself. :) I have always known something was not quite the “normal “ in my body, but my diagnosis didn’t come until 1/18/2020. I have been learning everything I can since then. seen so many specialists. Many to go. Anyway, this is my first online support experience. I have much to learn, and being a bit introverted, a little nervous. so I may just listen and learn. I am grateful to be here.
    #MightyTogether

    Post

    GAH! Im having and autonomic disfunction attack.

    My whole body is tight and shakibg and shivering.

    Woke me up. Can barely type. I need to go take a klonapin & a muscle relaxer.. . and maybe some rescue hydrocortisone b4 this turns into an Adrenal Crisis.

    Been awhile since Ive ht ad one.

    #disautonomia
    #AskMe
    #adrenal crisis
    #Hypopituitarism

    Question

    Anyone out there in their 20s or raising a toddler with hypopituitarism? Looking to make a friend that understands :)

    I’m a 24 year old mum to a 2 year old girl from Australia, currently living in the thick of the Victorian Coronavirus pandemic. I’ve also got hEDS and some heart problems along with all the other fun bits and pieces like anxiety, depression, RLS, scoliosis etc but the thing causing me the most trouble right now is the hypopituitarism. I would love to make some friends with the same condition. #Hypopituitarism #HEDS #svt #heartabnormalities

    Post

    Abusive household

    Hey, currently living with #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #HashimotosThyroiditis #HypothyroidismUnderactiveThyroidDisease #Panhypopituitarism #Hypopituitarism #RheumatoidArthritis #GrowthHormoneDeficiency and am in an abusive household where I am dependent. my mom took my savings of $5,000 when i was 18 and bedridden and spent it. my dad is violent and my brother. i lost all my friends cause of multiple reasons including whats listed above so i have nobody. my family is homophobic ( im lgtbtq+) and my dad is racist and im half latina. he says im faking everything. i was raped by a boyfriend i had and my mom uses it against me in arguments all the time or brings him up to upset me.

    i plan on moving to NYC as im an artist. im also going to college there so ANY ADVICE would be extremely appreciated. such as financial advice, books, tips, tricks, for any thing ive mentioned. thank you for reading. peace and love 🌈💜

    Post

    A day in a Hypopituitarism patient life #RareDisease


    My alarm goes off at 6:30 am . Beside the bed I've put a cup of water and a box of levothyroxine . I take the pill and go back to sleep to 7 am , giving some time for this dizziness to subside . Then it's breakfast time , something my stomach can tolerate . I've been diagnosed with so many GIT issues due to hormonal imbalance , so I can't eat most of foods . Here comes the AM steroid dose . Then it's time for a warm shower to loosen up those painful muscles . And that large cup of coffee is a necessity , without it I can't get through the day .
    I leave the house , the one I rented just five minutes away from work as I can't travel long distances . I reach work at 8:30 am and I start feeling the pain crippling through my body again , but somehow I manage to do my best .
    Then it's 12 pm , time for lunch break and the second big cup of coffee and the estrogen pill . If I had this pill on empty stomach , I'd spend the rest of the day throwing up .The pain subsides here just to come back 2 hours later .
    I get back to home at 5 pm totally drained and exhausted . Here are some snacks I brought on my way back . I eat some of them to take the PM steroid dose and jump into bed . It's time for some videos or mobile games . It's 8 pm and I'm finally able to get out of bed . I barely reach for the refrigerator to get that meal I already prepared on the weekend to heat it in the microwave . Then here comes fun time . I may bake some cookies or decorate a cake if it's a good day . If it's a bad pain day I'd prepare a warm drink and read an interesting book while lying in bed . Untill it's 10 pm & it's time for the sleeping pill , the one without which I'd never be able to sleep and I'd miss work the next day . I close my eyes untill my alarm goes off at 6:30 am .

    Post
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    To Sleep.

    Well it certainly was a very rough night. Thoughts swirled around my head like a crazy vortex of negative and hopeless intrusions. If only I could relax like this fellow, and just let the madness transform into benign dreams of better days to come.

    ( this was an old entry from my diary when my anxiety about my illness was consuming my thinking) #AnxietyAttack #Hypopituitarism

    Question

    Has anyone ever had the experience of elevated blood pressure when given life saving boluses of solu-cortef? #Hypopituitarism #AdrenalInsufficiency #AdrenalCrisis


    #Hypopituitarism

    Post
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    Secondary Adrenal Insufficiency #AdrenalInsufficiency #Hypopituitarism #PTSD

    I would like to say to my HPA Axis, “ you think too much” Quit worrying and stressing about the small stuff.

    Mindfully give thanks for all encountered, with simply remembering that you are driving Sue’s thought patterns today and now you can let her take control of her own chemical response with the tools she has at hand.

    Thanks to Jorge Muniz at Medcomic
    #MightyPoets