Panhypopituitarism

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    FREE Conference on Adrenal Insufficiency and Cushing's Disease

    During our conference in Portland Oregon March 30 - April 1st we will have endocrinologists speaking on Cushing's, Primary AI, Secondary/Tertiary AI, and more. There will also be experts covering topics such as:

    SSI/Disability

    IEP/504/Health Plans

    Health & Nutrition

    Advocacy and Legislation

    Any endocrine, thyroid, or growth hormone issues

    Working with a chronic condition

    Creating Community

    Learn more and register

    united4rare.org/aiu-csrf-conference-2023

    #AddisonsDisease #AdrenalInsufficiency #PituitaryTumors #Panhypopituitarism #SeptoopticDysplasia #Adrenoleukodystrophy #CongenitalAdrenalHyperplasia

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    Direct Care Physicians....Why I love this model & anyone else have experience with or something to say?

    So I have A Lot of things going on with me medically.....like several rare diseases/disorders & a few run of the mill,
    I started getting sick in my early 20's and was disabled with 'just' Narcolepsy with Cataplexy and Sudden onset Migraines that took up 20+ days a month...
    And things jyst continued to pack onto that snowball over the years....and they keep coming at me.
    They are listed in my profile & some hashtags. Feel free to message me with questions about them.
    In seattle I lucked out with private complementary medicine practices that had a minimum of 30 min appointments.
    I moved back to Raleigh NC in 2019 & had no problems finding some great specialists but it took me about a year (some bad 15 min Drs, some who told me they literally did not have the time to be a good physician because my medical history was complex...so I couldnt see someone fir a UTI, but panhypopituitarism? No problem.
    Finally the person in charge of Dukes Primary Care section told me she thought i needed a Direct care physician (DCP).
    I see Zane Lapinskies at www.fischerclinic.com/faq.html
    DCPs are doctors that want to go back to the old day where they had less patients and could actually spend time with them.
    Instead of having 2000-3000 patients, they generally limit themselves to 500. Instead of billing insurance they charge a monthly fee (usually between $50 & $100).
    They can afford to do this because they dont bill insurance. Turns out dealing with insurance companies eats up about 60% of a practices income, so they have to have a lot more patients to make up for that.
    DCP's dont bill insurance and you cant bill yor insurance for them.
    HOWEVER for that fee,
    You get a physician you never pay a copay to, all appointments are a minimum of 30 min, longer if needed, same day if needed, are available 24/7 by phone (also text and email) can do telemedicine, have no limit on the number of visits you can make a month, get really involved in your care (like researching and learning about your conditions, calling your specialists or other doctors to coordinate care, reading and staying on top of your medical situation, act as a guide and sounding board for complex things...and much much more).
    You can often have labs done there for much cheaper than the coinsurance cost or they can refer you out to a lab that bills your insurance & your insurance covers your specialists medications tests mri's and all the costly stuff).
    This can also be great if you have a high deductible health plan or need extra time & care.
    I have met my maximum out of pocket on my medadvantage plan in the first 6 mos of every year for 10 years. Running out of space.
    For me and all my conditions it has absolutely been worth it.
    I love having a doctor that stays abreast of what is going on, can respond immediately and acts as a great sounding board.
    The link above 4 DCP info.

    #dcp
    #directcare
    #primarycare
    #complexillness
    #ChronicIllness
    #copingwithlife
    #askme

    #imajenn

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    Panic Attacks

    Does your chest hurts, shivering/shaking inside your body even though you are not shaking internally when people
    See it, tingling feels, crying and I also have #Panhypopituitarism and #GrowthHormoneDeficiency which I produce a little to no hormones which cause chest pain and panic attacks. #Anxiety #PanicAttack

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    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 🌈💜

    5 comments
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    Where can I find more information on PHP?

    I've been diagnosed since I was 11 so most of the information from then went over my head and I just want to know more about my rare condition.
    #Panhypopituitarism

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    Friday Thought

    Speaking strong words to strengthen you: 🗣

    ‼️ You are not defined by your diagnosis!

    ‼️ Chronic illnesses were not chosen by you!

    ‼️ Invisible illnesses are just as valid!

    ‼️ Our lives matter!

    ‼️ Despite your mess, you are still Mighty!

    ‼️ We love and deserve to be loved!

    May your strength be enriched by words of compassion, kindness and belief 🙏🏾

    From my universal core of life, I love YOU ❤️

    #MightyTogether #CheckInWithMe #MentalHealth #ChronicIllness #InvisibleIllness
    #HidradenitisSuppurativa #Depression #AdrenalInsufficiency #PeripheralNeuropathy #HIVAIDS #Panhypopituitarism #Anxiety #SocialAnxiety

    4 comments
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    For those with #Panhypopituitarism how often do you find yourself exhausted to the point where you can’t function?

    I’m trying to make this for the sake of showing others who don’t live with #Panhypopituitarism that it’s not some pleasant journey. Needing help.

    5 comments