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    I’m new here!

    Hi, my name is HarryJames. I'm here because I’ ve been living with EDS all of my live and didn’t know it. I’m make, and it’s only gotten bad in my sixties. I’ve finally found receptive doctors, but good information is even harder to find.

    #MightyTogether #Depression #Migraine #Arthritis #meniere'sDisease #DemyelinatingNeuropathies

    9 reactions 4 comments

    Fatigue and pain won

    I had plans.

    I had great intentions. I got started and just getting dressed was painful but I was going to push through… but the fatigue won.

    Sometimes it’s hard not to be disappointed in yourself for not being able to complete simple things.

    I mean overall pain is not simple, and heavy fatigue is not simple but when it’s chronic you think to yourself, you can get used to it and push through it.

    It’s a control factor, you’re sure you have some control… It’s crazy sometimes to realize it’s not always a matter of will…. You can’t just “Will yourself through” sometimes your body wins …


    You try again tomorrow….

    And that’s ok…

    #Asthma #Arthritis #ChronicIlless #Jointpain #ChronicDepression #TraumaticBrainInjury #PostconcussionSyndrome #AnkylosingSpondylitis #ADHD #ChronicPain #Endometriosis

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    A repeating quote in my recent priesthood Blessings which lately I've been requiring every day, I have been told by a merciful Heavenly Father⬇️⬇️

    Allow your mind and body to work together. My anxieties have just hiked up crazily lately because of extra pain and health issues and all my doctors abandoning me because they don't know how to help me anymore they say. This medication my rheumatologist put me on even though I did not want to be on it and kept begging for the past 4 months to get off of it now that he has ditched me I have to taper off on my own. Luckily for him I have done this by myself before. Part of the side effects that seriously ruined my quality of life what little I had cause me to hallucinate scarily awake and asleep. So heavenly father is telling me to trust my mind and Trust rationalizing that what I see can't be real. Allowing my mind to comfort my body so I can work with my body to ignore any Sensations that come along with my hallucinations. This daily devotional fits with where I am at now in using that information to improve my life.

    For any of you who don't know or don't know what I'm talking about I am a member of the Church of Jesus Christ of Latter-day Saints. We know that God still performs miracles and we can use the priesthood to get blessings to heal the sick and to offer words of comfort. Only members given the Melchizedek priesthood personally ser apart, can give these blessings. The words they say are not a memorized prayer they are told to them through the spirit and through the priesthood so that they can give voice allowed to the words from God.

    Perfect words and phrases that the giver of the blessing wouldn't know to use are communicated during this blessing. Things only God would know to give comfort are said. These priesthood blessings are the only things that have kept me going throughout all my years of life. They help guide, protect, and support me though my personal and unusual life requires me to not be healed of all my pain, I am regardless still given strength to handle all my pains and many many health issues, as well as aiding me in getting this medication out of my system, lessening the horrible side effects so I can continue to do God's will.
    These blessings perform incredible Miracles that provide relief, comfort, advice, sometimes admonishments and warnings, and answers to all prayers you have offered up to that point. They are available to any members and non-members in need but they must be given by members of the church with permission.

    Here is the devotional today from one of the Christian books I recently found to use along with a few other 365 day devotionals from those of my faith. I am not sure what this authors religionis but I do know it is Christian faith based and has a great emphasis on our relationship to God and our Savior. My previous post an hour ago contains a link to where to find this book for yourself if you would like.

    #AmplifiedMusculoskeletalPainSyndrome #Arthritis #Anxiety #ChronicFatigueSyndrome #ChronicPain #ChronicIllness #Depression #Disability #EhlersDanlosSyndrome #Endometriosis #ComplexRegionalPainSyndrome #Fibromyalgia #GastroesophagealRefluxDisease #Grief #HypothyroidismUnderactiveThyroidDisease #Insomnia #Lupus #Lymphedema #PosturalOrthostaticTachycardiaSyndrome #PTSD #Psoriasis #MentalHealth #Migraine #MemoryLoss #RareDisease #SuicidalThoughts

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    So sorry guys! I accidentally enjoined the group and then it deleted all the posts I had made so here I am reposting this so I can name the source

    I this is a few days late now but this was an answer to my prayers recently.

    The book this is from is called Jesus Calling enjoying peace in his presence by Sarah Young I specifically got a different version than the original of hers I can comment the link so you guys can get to it more easily. Again so sorry for the trouble and for accidentally deleting all your comments! And definitely frustrated that my other posts got deleted too along with the rest of all those comments and all of your support.

    Hands that have no sensation and barely work cause All sorts of problems 🤦🏼‍♀️ sorry again!

    #AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #bedbound #ComplexRegionalPainSyndrome #Fibromyalgia #GastroesophagealRefluxDisease #HypothyroidismUnderactiveThyroidDisease #Grief #Insomnia #Lupus #Lymphedema #MightyTogether #MentalHealth #MemoryLoss #Migraine #PosturalOrthostaticTachycardiaSyndrome #PTSD #Psoriasis #RareDisease #SuicidalThoughts

    18 reactions 1 comment

    Feeling overwhelmed

    I don’t know where to start , overwhelmed, tired and barely holding on.
    I guess the best place to start is with my sweet Samuel’s 23 birthday in heaven yesterday. No one in my family called on contacted me in any way. Not even my other son who knew the birthday was coming up. I really struggle on that day. I always take his birthday off from work so I can put flowers at the cemetery and just be at home in case I get emotional. I was unable to go to the cemetery yesterday because I felt really sick and our weather was nasty. So I kept his flowers home with me.
    Samuel was diagnosed with a rare lung defect and two weeks later he was dying. We went to Children’s Hospital in Philadelphia. We went to have fetal surgery, to remove the tiny mass in his chest, place him back inside me and then I would spend the rest of my pregnancy in Philadelphia.Hopefully I would get to 36 weeks and Samuel would be delivered by c-section.
    The doctors were able to remove the mass and put Samuel back inside me when his heart failed. They were unable to revive him.
    That night in the hospital was horrible. I did get to hold him and I asked the nurse to weigh him. He was very tiny.
    But when they laid him on my chest, he looked like he was sleeping. But there was so much I didn’t know then. I didn’t know that I could hold him as long as I wanted to. I didn’t know that I could have bathed him and dressed him. I didn’t know that we could get pictures of him or have him baptized
    I think this was the trauma that led to my fibromyalgia as well as PTSD, depression and anxiety.
    Everyone wanted to pretend nothing ever happened. No one wanted to let me talk about my son. To this day no one in my family even mentions his name or asks how I am doing.
    I remember waking up in the recovery room and I asked about my baby. The nurse said let me get your doctor and I knew he was gone. We spent a few more days in Philadelphia because I had to heal some before flying home.
    This day stinks in so many ways. I want to yell at my family that I would rather they mention his name, ask me to share his story. Yes, I might cry but the tears are right there anyway.

    I am also struggling with all my illnesses and chronic pain.
    Asthma, diabetes, fibromyalgia, osteoarthritis in every joint in my body, swollen fingers and hands,
    Migraines, a type of autoimmune arthritis in my spine, spinal stenosis, degenerative disc disease in my cervical and lumbar spine and a bulging disc. I am just ready to be done with this life. No seems to care. Not even my other son. No phone calls, no activities due to pain. My life has become very small. I don’t see any hope for improvement. I want to see my Jesus. I want to be pain free.
    I can’t leave my second son even though he really needs to grow up and help me more.
    I really don’t think anyone would miss me besides my son. My mom and dad are gone.
    I am still trying to keep working but it is incredibly difficult. I have been turned down twice for disability.

    20 reactions 4 comments
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    I know having a body that isn't considered perfectly normal can make your confidence waver.

    I use to have untouchable confidence. Then I gained weight from Hypothyroidism and suddenly I wasn't shaped perfectly like before, my pain got worse and my body turned into a fluffy blob as I fondly think of myself-no sarcasm.
    It is HARD to rise your confidence but first you must do something to help you see yourself in a better light. It is not others views that shape you but it is what and who you give that power to that has control.

    Take it back! Dress fancy for no reason, do your hair fancily, exercise a bit or eat a Lil bit more health consciously. Put on a little bit of makeup, get a nice haircut.
    You have far more power than the world wants you to know.

    Next You must stop negative talk! Every time you think or say something negative about you or your body you must then say three things that you love about yourself or three things that you like about yourself or three things that you admire or the other people have admired about you. For everyone negative thing you must say three positive things. I also write uplifting quotes on my mirrors and dry erase marker. It's amazing what something that you don't think twice about can have such an effect on how you consider yourself.

    You, my dear Mighty friend, are a Work of Art!
    Say that out loud! YOU Are a Work Of Art!

    And that is NOT contingent on your health 💕💕💕

    #AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Fibromyalgia #GastroesophagealRefluxDisease #HypothyroidismUnderactiveThyroidDisease #Insomnia #Lupus #Grief #bedbound #ComplexRegionalPainSyndrome #COVID19 #Lymphedema #PosturalOrthostaticTachycardiaSyndrome #Psoriasis #PTSD #MightyTogether #MentalHealth #MemoryLoss #Migraine #RareDisease #SuicidalThoughts

    19 reactions 4 comments