Sphincter of Oddi Dysfunction

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    #ThisIsMe

    I realized I hadn’t updated my “medical conditions” list on my medical ID bracelet site in awhile. I realized after looking over my list that most of my conditions are “invisible”, except for my knee problem that I wear a knee brace for and sometimes use a cane. So often, I feel overwhelmed by the number of conditions I live with (Am I a “bad seed”?) and the physical and emotional pain that they cause; even the ones that have been “repaired” have come with lingering pain from scarring, incomplete cure or subsequent Dx. I’m thankful for my caring husband and a few really close friends who understand to a point. But even they get tired of my need to share my emotions about what I’m going through. I’m thankful for this group who gets what I mean and can give support without judgment or weariness.
    I’m no longer able to work fulltime; I used to be an educator in various special education programs as well as in schools.
    I try to help others who have conditions like mine as well, so I’m not just a “taker”.
    Here is my list. Dates indicate either diagnosis date or surgery date.

    Right inner ear imbalance 1998
    Narcolepsy 1999, 2021
    Allergies - plants, animals, foods and meds
    Asthma
    Hypothyroid
    Sliding hiatal hernia 2011
    Sphincter of Oddi dysfunction Type 3 2007 - result of gallbladder removal 2005
    Diabetes Type 2 1996
    GERD 2005
    Mild/moderate disc degeneration neck & low back and mild spinal stenosis
    Slip & fall back injury 10/15- MRI Nov 2017 SI joint injury
    Fibromyalgia - 1995
    Sleep apnea 2019
    History of ruptured ovarian cysts 2006 -
    Recurrent tingling/"electrical shocks" all over body 2007 - diagnosed as Small Fiber Polyneuropathy 2020
    Scoliosis (curved and twisted)
    Right knee cartilage deterioration (injured 1979 & 1986) - diagnosed permanently dislocated kneecap 2019
    Arthritis - neck, hips, knees, hands
    Carpal Tunnel syndrome - 2019
    Bursitis - left hip 2017
    Recurrent "tennis elbow"
    Plantar fasciitis and tendonitis both feet - custom orthotics 1991
    Fatty liver
    Cardiac "regurgitation"
    Major Depression,
    Anxiety, C-PTSD, possible BPD
    Multiple concussions (5)
    Multiple whiplash injuries
    Vaginal Hysterectomy with Rectocele and Cystocele repairs - 2018 - Urinary incontinence
    Frequent Migraines

    #Multiplediagnoses
    #ChronicPain #MentalIllness

    #SuicidalIdeation
    #Trauma
    #SexualAbuse #SexualAssault
    #ChronicIllness
    #PostconcussionSyndrome #SmallFiberPolyNeuropathy
    #InvisibleIllness
    #Vertigo
    #Migraine

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    Good Morning Mightys #MightyPets #CheckInWithMe

    Good Morning Mighty Family n Friends

    My Pepper Pup looks very bored already by the dark nights and cold evenings.

    I've even put my heating on. Eek.

    I just couldn't cope any more so I just had too. 😅😊 it's nice a toasty warm in my home now. Pepper n Pedro are much happier too. Much nicer than just the fire. 🔥

    How are you all coping with the autumn cold or in the uk it feels like winter already. Brrrr ⛄☔

    Love n hugs Tj ♥️🧡❤💜🦄🦓🤝💪 #winterwarmth #Love #Hope #TrigeminalNeuralgia #ChronicIllness #Migraine #Family #Arthritis #ChronicPain #InflammatoryArthritis #SphincterOfOddiDysfunction #GlossopharyngealNeuralgia #Anxiety #Depression #DistractMe

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    World Arthritis Day #CheckInWithMe #CheerMeOn

    It's today 12th October

    World Arthritis Day

    It's just part of you
    Not the whole you
    Just a bit of your story

    But if you'd like to share your story with us today

    Please do..

    I have PsA(psoriatic arthritis) and early onset osteoarthritis. I was diagnosed 6/7 years ago after suffering with symptoms since I was 32 years old. I am now 51.

    I mainly suffer with enthesitis meaning it's in my ligament and tendons and not my actual joints. So hence it took so much longer to get a diagnosis. I have it in every joint including my spine and neck.
    Makes for an interesting life.

    Love n hugs on World Arthritis Day Mightys Ones Tj 🥰🖐😘😊💜💪🤝❤🧡
    #MightyTogether #PsoriaticArthritis #Osteoarthritis #TrigeminalNeuralgia #GlossopharyngealNeuralgia #InflammatoryArthritis #Migraine #ChronicPain #Selfcare #FamilyAndFriends #ChronicFatigue #SphincterOfOddiDysfunction

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    Trigeminal Neuralgia #CheckInWithMe

    Good Morning Mighty Family n Friends 💪🖐

    It's nearly that time of year again
    7th of October is nearly here again and it is international Trigeminal Neuralgia day again
    Teal is the colour of the day for raising awareness for us who suffer from this awful disease.

    Anyone one can get this. At any age male or female. Although the neurologist will tell you children do not get it.
    Yes they do!!!!!!

    It is literally a pain in the face electric shocking nerve pain in the face. Like being hit be a train over n over n over n over again in the same place oh but it moves places too.

    Love n hugs Tj 🦓🦄🦓🦄🦓 #GlossopharyngealNeuralgia #TrigeminalNeuralgia #OccipitalNeuralgia #ChronicPain #ChronicIllness #RareDisease #Migraine #SphincterOfOddiDysfunction #Arthritis #MightyTogether #Love #Hope #Selfcare

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    Something Different #CheckInWithMe #CheerMeOn #Family

    Good Morning Mighty Family n Friends

    How are you Today 🖐

    It's not that I want to run

    Away from anything

    I just want to

    Run towards

    Something different!!!

    Who wants to run with Me??

    Not that I can Run mind 😅🙃
    I can sort of walk. More like hobble with my crutches, as long as you all walk slowly and don't leave me behind.
    🚶‍♀️♿
    But I feel like going in a different direction, trying something different. Doing something new. I'm stuck in a rut, a hole, a big rabbit hole.

    I'm sure we all feel like this from time to time, or all the time.
    Depression or mental health. Maybe it's my Age. Ugh. 😳👵

    So who is with me ✋
    Love light n hugs Tj
    ❤🤐🤷‍♀️🖐💜🧡😘🙃😌🤗👼🦅🐧🦉🥰🐦😳👵 #ChronicIllness #RareDisease #MightyTogether #PsoriaticArthritis #TrigeminalNeuralgia #GlossopharyngealNeuralgia #Migraine #Cancer #ChronicPain #Chatspace #SphincterOfOddiDysfunction #Hope #Love #Bekindtoyourself #Selfcare #Kindness #

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    Hello 🖐 There #CheckInWithMe

    Good Morning Mighty Family n Friends

    Guess What

    I think my nasty Migraine might have finally gone....
    Whoop whoop...
    ❤❤❤❤❤😎
    Only took a week. Been thinking it's been gone these passed few days. But just wanted to make sure it had, and wasn't gonna sneak back up on me. 😅
    It's been raining 🌧⚡Thunder and lightening then sunny next day 🌞So wanted to make sure.
    Still got nasty headaches, but that's just normal for my meds and facial conditions.

    AND guess what number 2

    My wonderful doctor after writing to the neurologist for the third time at my other local hospital. I only have an appointment in September.
    A face to face one even.
    That's another little dance time.
    I've seen her before when I lived in that area.
    She is really nice 👩‍⚕️saw her when she diagnosed me with trigeminal neuralgia.

    So fingers crossed she can start to investigate these migraines and cluster headaches.

    So as I can now see out of both eyes again, no double vision or blurry vision. I'm back on the Mighty.
    I have missed you all so much. Gets lonely. But my lovely neighbour kept me company, and when she couldn't be there she'd drop off her little dog for a bit, to play with my 2 pups for a while.
    Loved watching them all play. 🐕🐶🐾❤😅

    Hope you are all ok. Do tell me what you are all up to.
    Love n hugs Tj ❤🤗🧡😘🌞💚🐶 #RareDisease #MigrainesWithAura #TrigeminalNeuralgia #GlossopharyngealNeuralgia #SphincterOfOddiDysfunction #Anxiety #Hope #Love #Selfcare #Bekindtoyourself #Family #Friends #Depression #checkonyourneighbours #Arthritis #PsoriaticArthritis

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    Morning !!!! #CheerMeOn #Migraines #Giggles

    Hello 🖐🖐🖐🖐

    I can't say Good Morning
    Cos I've still got the dam migraine. Day 5 now

    I'm ok just completely fed up with left side numbness pins n needles neck pain and of cause the one sided head pain 😥
    I think I know what it is too.
    But until I get to the headache clinic I can't formally get diagnosed with it.

    With the Pandemic how long will that take. Both my local hospital won't take me on.
    Neurologist are working on coronavirus patients aren't they!!

    But hey what's new with that.
    I've been dealing with chronic illnesses for 20 years now. So it's nothing new . Just so so so dam annoying frustrating and making me angry..... 😠😵

    Its no ones fault, I'll just carry on as I always do. With a smile and a laugh . I'll cry when I need too, rant and get it out of my system.

    So thanks for listening My Mighty Family n Friends.
    You are all the very best.
    Love you all . Tj 🤗😘🧡❤💚💛😁🖐

    #Undiagnosed #frustrated #RareDisease #Arthritis #Migraine #ClusterHeadaches #Anxiety #MightyTogether #Bekindtoyourself #Selfcare #Love #Hope #rant #Vent #talkingtherapy #CheckInWithMe #NeverAlone #SphincterOfOddiDysfunction #PsoriaticArthritis #GastroesophagealRefluxDisease #HiatalHernia #Pain #Chronicpainwarrior

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    Humid but not too humid #giggleswithafriend #Family

    I'd walk through fire

    For my Best friends

    Well, not fire.

    That would be

    Dangerous

    But a super humid room

    But not too humid

    Because

    You know

    My hair......

    👩‍🦰👱‍♀️👩‍🦳🧔👩‍🦱

    Now that's a friend for you.

    😅🤣😂😁😀😆

    How are you all today?!

    Hot and humid. Ready to walk through a humid Room for your Mighty friends 😅👊💜

    Love n hugs Tj 🌈👋💪🐕🐾🐶

    #Anxiety #Hope #RareDisease #PsoriaticArthritis #Depression #SphincterOfOddiDysfunction #TrigeminalNeuralgia #ClusterHeadaches #GlossopharyngealNeuralgia #Arthritis #Bekindtoyourself #checkonyourneighbours #Selfcare

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    Occupational Therapist Visit #CheckInWithMe #ThankYou

    Good Afternoon Mighty Family n Friends 👋🌞☀️🌡

    I've just had my visit From a lovely man called Cat. He was in full PPE , he must have been hot,
    He fitted me for some new crutches and showed me how to go up and down my 4 steps properly 😳 so that's why with my walking stick my shoulder and elbow are killing me.
    Know I now why 😅

    So my neighbours will be looking at me strangely as I keep practicing going up n down , up n down lol.
    Ha ha .😅🙃😁🤪

    He also fitted a bath board as decided a bath chair was just going to be too heavy for me to use and remove . (Puppy baths)

    So a board is better. So I can shower yayyyy, and they coming to fix a rail so I can then get out of the bath better. Whoop whoop. It's what I wanted n so need.

    Really nice guy and the pups just layed down and behaved.🐕🐶🐾...what unheard of.. has he got superpowers....🦸‍♂️

    Going to fit a under the bed rail too and toilet rail too. Oh and outside rail so I've got one both sides.
    Perching stall for kitchen fitted to my butt. Ha ha . Thought that was funny.

    Hopefully this will make life and bathing washing my hair much easier. I'm so glad I phoned up and did it.
    Thankful for living in the UK and to the NHS

    Super grateful for my Mighty family and all your help yesterday. Bringing my anxiety down, and all the love. 💜💙😘

    So glad for this community the compassion love kindness
    You are all superheroes in my book. 😘💙💜💪🤗👋🦓🦄🦓🦄🦓
    Love you all Tj

    #MightyTogether #Bekindtoyourself #Hope #OccupationalTherapy #PsoriaticArthritis #Love #compassion #RareDisease #Superheroes #SphincterOfOddiDysfunction #TrigeminalNeuralgia #ClusterHeadaches #GlossopharyngealNeuralgia #Arthritis #Bekind

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    Good Afternoon #CheckInWithMe

    Hello 👋Mighty Family n Friends

    I have scary stuff going on tomo.

    I only went and phoned up the occupational therapist and asked if I could have a home assessment didn't I.
    Well they phoned me back the same day and went through some of the things I could do with in the house. Well that was last week.

    Today someone from my local hospital phoned up........ eek and he is coming tomo, to do the home assessment.
    Anxiety is now sky high.....
    Do I really want a bath lift, am I that disabled, or is it just my anxiety talking.

    Omg omg omg
    Someone talk me down from the ceiling plz.😥
    It's happening too quickly, I need more time to adjust to this.
    I thought with covid19 they'd be far more busy, and it would take longer than this.

    It took me over a month to just phone up in January and I phoned the wrong department!!! So I've kept the right phone number and then the Pandemic hit. Now it's all Happening too fast. I can't cope.

    Help!!!!!
    He is coming at 11 tomorrow morning.
    I know I need the help and equipment so why am I panicking so much. Why am I like ... I don't want this. This is stupid, ugh, Grrr.

    Love n hugs Tj
    Venting ranting in a mess today
    🙄🤨😯🙃😕😧😬🤯🤪😵😳 #OccupationalTherapy #Equipment #PsoriaticArthritis #ChronicPain #AnxietyAttacks #Hope #Love #Bekindtoyourself #Kindness #SphincterOfOddiDysfunction #RareDisease #Depression #Disability #InflammatoryArthritis #Osteoarthritis #HipSubluxation