Rare Disease

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    I'm new here!

    Hi, my name is Plurbaybee. I'm here because I have a rare disease called Wildervank Syndrome, I am also the parent of a child with a rare disease called Cornelia de Lange syndrome. His nickname on social media is Warrior Bee. We are here to raise awareness, to spread joy, and help people grow in their understanding of rare disease.
    #MightyTogether

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    Received a Wonderful and timely gift from one of my good friends and her family.

    I haven't taken my bracelet off since!

    It says "life is tough my darling, but so are you."
    Even better is that this bracelet doesn't seem to be causing me pain like some jewelry can. It is loose enough to not cause severe pain but tight enough that it stays on and doesn't catch on anything. I'm keeping the sunshine book right by my bed and look forward to reading more of it . And the bath bombs will definitely be getting some good use when I next take an Epsom salt soak.😊🛀

    I definitely needed this sunshine gift and the bracelt too to help me focus on the good in life, shoving away negativity or pessimism and to keep me going despite worsening pain struggles misery memory and health.

    Tomorrow I have my appointment with the disability doctor. I pray that this appointment will be the only one I have to go to and that they can see how much I need help.
    Because my parents are struggling with the cost of all of my medical bills and it's not right and I can't do anything about it. My parents don't hold it against me and said that they're my parents and the take care of their children. I also need so much more help with doctor's appointments for lots of areas neurology, gastro, pain management, rheumatology, and a few more. I really need the world to realize that I'm disabled because I definitely have been for a long while.

    Wish me luck dear Mighty friends!
    Wishing a lovely Monday Tuesday and week for you wonderful souls.
    One day at a time, breathe, we will overcome

    #AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Fibromyalgia #GastroesophagealRefluxDisease #HypothyroidismUnderactiveThyroidDisease #Insomnia #CheerMeOn #MentalHealth #Lupus #Lymphedema #MightyTogether #PosturalOrthostaticTachycardiaSyndrome #RareDisease #SuicidalThoughts

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    Honor yourself

    With the busyness of life and all the challenges we are burdened with, it's so easy to forget to take care of ourselves. What sorts of things have you done to honor yourself this weekend? Got any tips for others who are struggling?

    ~ Thanks to all. Thanks for all. ~

    Speaking of thanks for all, I was hoping we could acknowledge everyone who comments below. I know it seems like a small gesture, but many people here have never opened up to anyone before and being open and honest with strangers can be quite scary. So, if we could show our gratitude by giving their comment a simple reply or heart, I’m sure they would really appreciate your team support. What do you say?

    #MentalHealth #Depression #Suicide #Anxiety #BipolarDisorder #BorderlinePersonalityDisorder #Addiction #dissociativedisorders #OCD #ADHD #Fibromyalgia #EhlersDanlosSyndrome #POTS #PTSD #Cancer #RareDisease #Disability #Autism #Diabetes #EatingDisorders #ChronicIllness #ChronicPain #RheumatoidArthritis #Schizophrenia

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    This is not my month but hopefully my bday month next month will be! I could use a vacation in a better body-couldnt we all!

    🥺😢😭Welp, my pain 'management' appointment went HORRIBLE!!!
    I was told that they had done EVERYTHING to help me (please note they have suggested only two forms of the same medication prescribed and have not actually Done ANYTHING. I have had to do all the work including going off meds on my own and despite valid concerns from me they never listened until it was too late. I am the one facing all the pain. And the head doctor has told me on all occasions that he doesn't know how to help me and he is out of ideas). I was told by my so called PAIN MANAGEMENT doctor that my pain is mostly. in my head and so I need to see a psychologist.

    They doubled my pain medicine dose but said "it isn't going to work anyway" and tried to take the $400 medicine my parents just paid for because the dosage was different now.

    He told me he was sure I have really bad pain but I am not correctly prioritizing how to help myself and since I wasn't he was going to remove the referral for neurology even though I reminded him that my hands don't work and I have severe migraines and that needs to take precedence. (I didn't bother to tell him my severe memory issues and other worsening symptoms.)

    He seems to think he knows better as to how to help me and how to tell my parents where to put their money since "everything costs so much that all the money should go towards a therapist to help cure me of all this pain that is so clearly in my head" although he didn't tell me how it got there! 😂😡🤬😭😭😭 I don't swear at all but I came MIGHTY close guys.

    It seems I am the only one in South Carolina pain management that wants to help myself.

    In ALL my LIFE I have never been told that my pain isn't real until we moved here.

    How is it they think that in my 15yrs of constant pain and 3 therapists I have come across, no one said my pain was mostly just in my head???

    And I couldn't even stand up for myself because I still haven't been able to get a new pain doctor or Rheumatologist and am dependent on this pathetic help from the drug I never would have had in my body until they introduced it to me.

    I am so very very hurt and not just from my pain but from cruel words and uncaring 'professionals' who have never had severe chronic pain in any portion of their life.

    And I had to forgo breakfast for that!

    Thank you Mighty friends for surrounding me with your goodness and helping lift me up as life gets evermore worse. I am honored to be on this platform with you all.
    Truly thank you so much for your support and love. I need and will need it as I try my best to pull myself back out of the waves again. I have definitely sunk deeper than ever before.
    But as long as the sun keeps rising for us to admire, so do I promise to keep putting one shaky step in front of the other(metaphorically of course 😅).

    Though I promise also to rest more often. You guys were right that sometimes I do have to take a week off to rest though I think of everyone on here daily.

    Love you all my Mighty family. You all have more power than you know. Thank you for existing 💖 💖💖

    For more check out my blog @ dailylight.blog

    #AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Fibromyalgia #GastroesophagealRefluxDisease #HypothyroidismUnderactiveThyroidDisease #CheerMeOn #MentalHealth #Insomnia #Lupus #Lymphedema #MightyTogether #PosturalOrthostaticTachycardiaSyndrome #RareDisease #SuicidalThoughts

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    It’s been a long time…

    Hi Mighties,

    It's the middle of the month but still Happy Mental Health Awareness Month and Happy Asian American Pacific Islander Heritage Month! It has been an extremely long time.
    Every time I come back on here and say that I'm planning on posting again, it doesn’t happen. So this will be Adela will post whenever she can.
    I had some free time today and decided to go on The Mighty. I looked at my profile, reminiscing on some of my posts and thought about what I was experiencing during those times and remembered how therapeutic and helpful posting was for me. I'm wanting to get back into that.

    Some (good) personal stuff to share that's occurred in the past year:
    1. I started exploring romantic relationships for the first time last year. A friend got me onto a dating app and my experience has been relatively positive.
    2. I moved out of my parents house for the first time last July. It was a much needed life change and I'm glad I did it.
    3. My therapist moved away last month, so I ended therapy after working with them for 8-9 years. I had concluded 17 years of being in therapy (for now, maybe)
    4. This entire time I've continued doing telehealth to provide therapy to my clients. In the past few months we've transitioned back into the office a few days a week, which has generally been better for myself and my clients in the work we do together. Next week the department will be fully going to be back in the office.
    5. It's been about a year and three months since I last had a severe depressive episode.
    6. I got my first tattoo about 2 months ago despite my parents being against it.

    Really trying to get into this adulting stuff 😂
    Time has been moving by so quickly. I've been continuing to learn and grow, as I’m sure everyone else here is doing the same. I am hoping to reconnect with some of you and connect with those I have not encountered yet 😊

    #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Parenting #MightyTogether #ADHD #Anxiety #BipolarDisorder #Depression #GeneralizedAnxietyDisorder #selfreflection #Positivity #WhereMyMindIs

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    Where does happiness come from?

    What do you guys think about this one? Are you waiting for something outside of you to make you happy? Or are you doing work inwards to find inner peace and inner joy?

    ~ Thanks to all. Thanks for all. ~

    Speaking of thanks for all, I was hoping we could acknowledge everyone who comments below. I know it seems like a small gesture, but many people here have never opened up to anyone before and being open and honest with strangers can be quite scary. So, if we could show our gratitude by giving their comment a simple reply or heart, I’m sure they would really appreciate your team support. What do you say?

    #MentalHealth #Depression #Suicide #Anxiety #BipolarDisorder #BorderlinePersonalityDisorder #Addiction #dissociativedisorders #OCD #ADHD #Fibromyalgia #EhlersDanlosSyndrome #POTS #PTSD #Cancer #RareDisease #Disability #Autism #Diabetes #EatingDisorders #ChronicIllness #ChronicPain #RheumatoidArthritis #Schizophrenia