Myotonic Muscular Dystrophy

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Myotonic Muscular Dystrophy
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Hi, my name is Brunette_Rhyme. I've been diagnosed with and am a long term sufferer, I have other conditions but they are not on this radar however that does not surprise me. I feel out of 32 neurological and a mess of a muscularskelatal, my body is heading for another change. How long before we know what’s going to happen is anyones guess. My biggest obstacle right now is I seem to be my carer’s carer. I have a new set of carer’s coming on board. My new NDIS package has come through and finally I had and awesome LAC who knew what she was talking about. We have fought so hard and finally I received a package where I now might received the care I need instead of laying on the floor in a pool of blood in the morning whether I have an Apple Watch on or not. It is all dependant on the impact of the fall and mine are usually low by the time I hit hard. I have been on dexemethasone for nearly 3 months this time and it’s taking it’s toll and my doc does not get back from holidays for another month. I have to hang on as 2 hospitals have nearly killed me and I refuse to go down that road. I have an induction on Monday and really need these carers up to speed. I have one carer who is about to take leave and is on holidays to Italy. I hope she has and amazing time and sadly another one I have just lost as she had a fight with another carer to whom where previously friends. She put me in a very awkward position of choosing. I refused to and split them apart. It was not good enough so she resigned. I am very sad for this and I see her hurting right now but as the say with Pride come a fall. She knows I am very fair and kind however she needs to ask me. I guess I am reaching out for some moral support as I am truly exhausted and know I need to hang in there. I hope every is doing the best they can? If you are having reasonably good day, share and extra smile for the rest of us and we will do the same in return. J

#MightyTogether #Anxiety #Migraine #Fibromyalgia #ADHD #PTSD #RheumatoidArthritis #MultipleSclerosis #ChronicIllness #CentralPainSyndrome #MyofascialPainSyndrome #ChronicInflammatoryResponseSyndrome #UrticarialVasculitis #CentralSleepApnea #CentralSensitizationSyndrome #VasculitisSyndromesOfTheCentralAndPeripheralNervousSystems #MultipleSystemAtrophyWithOrthostaticHypotension #HipDysplasia #DegenerativeDiscDisease #DentatorubralAtrophy #MyotonicMuscularDystrophy


No warning

Why does the pain hit with such ferocity that it takes my breath away and sends me to the floor? Why does it hit with no warning that it's coming? I promise I have not done too much, I have not lifted something too heavy or without proper form, I have not been sick or injured recently. The pain comes out of nowhere and everywhere. Thanks for letting me whine.
#ChronicPain #Fibromyalgia #MyotonicMuscularDystrophy


Rare Disease

On 2/28 I went with members of my patient community to Senator Dianne Feinstein's office to thank her for her previous support ( she's on the Appropriations Committee and share with her representative information about our disease myotonic dystrophy This weekend I attended a NORD event and learned more about the Orphan Drug Act and met some great patients and caregivers representing other rare diseases I'm feeling a new sense of empowerment #RareDisease #MyotonicMuscularDystrophy #PatientAdvocates #NORD #OrphanDrugAct

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