Vasculitis Syndromes of the Central and Peripheral Nervous Systems

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Vasculitis Syndromes of the Central and Peripheral Nervous Systems
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    I’m new here!

    Hi, my name is nscotti. I'm here because I want support from those who understand how it feels to try and be a functioning adult and career while handling chronic illness and pain.

    #MightyTogether #Anxiety #Depression #Migraine #ADHD #Fibromyalgia #PTSD #Grief #VasculitisSyndromesOfTheCentralAndPeripheralNervousSystems

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    I’m new here!

    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

    Post

    I'm new here!

    Hi, my name is C0ziNess. I'm looking for help and advice on travelling whilst managing my condition

    #MightyTogether #VasculitisSyndromesOfTheCentralAndPeripheralNervousSystems

    Post

    I'm new here!

    Hi, my name is Sherry (MySharona for this site) I'm here because of a recent diagnosis of Livedoid Vasculitis and I’m hoping to connect with others whh have it.

    #MightyTogether #VasculitisSyndromesOfTheCentralAndPeripheralNervousSystems

    Post

    I’m new here!

    Hi, my name is peytbethky. I want to find social connections with others and community supports that I may be unaware of that could provide assistance with daily life and activities.

    #MightyTogether #Addiction #ADHD #MentalHealth #VasculitisSyndromesOfTheCentralAndPeripheralNervousSystems

    Post

    Hello! Intro from Jaybee

    Hello This is Jaybee I just stumbled onto this pageand looks like I have found a hidden treasure of people I can relate to! I'll give you an idea about my health. I am a #breast cancer late stage #survivor with many side effects that did not end after 1 1/2 years on chemo I had a mastectomy and reconstruction and my lymph nodes removed from the area From my hair to my toes I have a list of problems brought on by high doses of chemo or by removal of #lymph nodes Without enough lymph nodes I swell every day from eyelids to uvala to feet toes thighs calves knees and belly, even armpits! (not all of them everyday or all at once) But every week all areas have swelled at least once My legs turned red while on chemo and got neuropathy they have stayed that way I have chronic pain everyday My ankles/tibia just above foot front on both feet feel like they are in a vice grip and the range of motion is limited I have #stenosis from the neck to the hips and at times this is excrutiating pain I had a steroid shot in Nov.. I have lots more going on; it's hard to remember them all. Having a sense of humor helps #ChemoBrain #BrainLesions #SpinalStenosis#ChronicIllness #ChronicPain #Spondylolisthesis #VasculitisSyndromesOfTheCentralAndPeripheralNervousSystems, ,
    Other , #graves , #barretts #HairLoss , #Narcolepsy ##Fibromyalgia #bunion #Vasculitis #panninculitis    #limpodermatosclerosis   #edema