Lyme Disease

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    What do I have?

    I get so frustrated trying to figure out what I have. I'm on disability because of my spine and being bipolar. I also have arthritis in all kinds of joints, cirrhosis,fractures, osteoporosis. My neck is involved too so I get bad headaches. I am getting help for everything but realized that I don't know which of my problems could be from Lyme. I got Lyme disease about 25 years ago and only thought I had migrating joint pain. I am 63 and for over a year have been experiencing severe hot flashes and chills and no one can explain or help. It's extremely debilitating when it happens and I'm so afraid that I won't be home. The other day I had to be driven home.
    Anyway, what do you all think? Anyone suffer the same? Do you think it could be from the Lyme disease and who would treat that?
    Thank you all and have a pleasant day.
    #ChronicPain

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    We are in need of a new co-leader for our group. Please see info below. We need someone to encourage, empower, support & be there for other members!

    We are currently looking for a new Co-Leader for the Multiple Health Challenges group. We have grown quite a bit and just passed 1,500 members. In the past co-leaders have been golden, really helpful for me when I got sick or burnt out and had to step away for a few days. I am looking for someone to welcome new members, comment or respond to most posts or other comments, make new posts to the group every once and a while, and preferably someone who has physical and emotional health challenges so they can best relate to and understand where other members are coming from when they post or comment.

    It is important for the group to have two distinctly different voices to support people because people might relate more to one of us. What is a really good situation is if we both respond to the same posts, welcome new members from different perspectives and provide voices for people that are accessible and relatable. There is a commitment needed that you monitor activities on the group regularly and can respond pretty quickly.

    Offering your own posts provides more content for the group…and when posts pose a question they keep things moving forward. I can assist and support by offering to look at your new posts for feedback and editing before you post if you would like it, comment on your posts to get the responses going to best support your efforts, help finding memes or images, and support you if we are dealing with someone struggling …. Like sounding suicidal or being manic…and I will check in to make sure you are happy and comfortable!

    I look at potential leaders' history of posts and/or comments that have helped and supported others in the past. Willingness to be honest and open about your own health challenges is crucial to best support people. A co-leader works together with me for some new posts and drafting new questions and is concerned about the well being of all members and can empathize with their paths.

    You will get access to the Community Leaders group and your name will have a “Group Leader” tab next to it up top on your comments and responses so I think people pay attention especially to your activity and wisdom shared from personal experience. Would you consider joining me on this journey? Let’s have a DM chat to discuss this! Thanks for considering taking on this role!

    #Depression #Anxiety #MentalHealth #ChronicPain #Chronicpainwarrior #Disability #BipolarDisorder #BipolarDepression #Bipolar2Disorder #Bipolar1Disorder
    #Stigma #ObsessiveCompulsiveDisorder #ADHD #Autism #Dementia #Addiction #AddictionRecovery #Cancer #TraumaticBrainInjury #BrainInjury #LossOfAParent #Grief #SuicideSurvivors #ChronicFatigueSyndrome #DistractMe #HIVAIDS #longtermsurvivor #ChronicIllness #ChronicPain #MightyQuestions #DownSyndrome #IfYouFeelHopeless #Hope #Deafness #neckpain #BackPain #CongestiveHeartFailure #Migraine #COVID19 #PeripheralNeuropathy #LymeDisease #Diabetes #EatingDisorders #Headache #Stroke #help #BorderlinePersonalityDisorder #Fibromyalgia #Disability #thankful #grateful #EatingDisorders #CocaineDependence #drugaddict #alcoholic #PTSD #EmotionalHealth #physicalhealth PainAcceptance #Acceptance #relief #Selflove #MightyMinute #MentalHealthHero #TheMighty #RareDisease #MightyTogether

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    I No Longer Wish To Be Strong

    I no longer wish to be strong.

    I yearn for softness like the release of rain during the drought or the first glimpse of the sun after a storm.

    Strength is not a badge of honour, it is a boulder of infinite weight.

    It is the most exhausting and lonely thing you will ever know.

    I dream of a life of easy Sunday mornings and the calmness from knowing that everything will be okay.

    I resent strength.

    What once was a regard of respect now weighs heavier on me than the buckets of tears I could shed.

    I crave the gentle waves lapping the shoreline and dancing with a lover in the kitchen.

    Strong to me has meant simply no other choice.

    It is dry eyes that could fill the largest lakes.

    It is blank stares as a veil for unshared thoughts.

    It is hiding the chaos of my mind behind a soft smile.

    Strength isn’t romantic or desired, and it shouldn’t be a way of life.

    There is nothing wrong with the sweet taste of fruit in the summer and a light breeze on a warm day.

    There is nothing weak about longing for the lighter things in life.

    For chasing them.

    For freeing your soul of the unwavering oppression of strength.

    I no longer wish to be strong.

    #LymeDisease

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    Really Rough Day

    Having a really rough day. I got triggered pretty bad yesterday. And I haven’t been feeling well. Found out I have Mast Cell reactions (which was great finding out cuz it’s finally an answer after a full year of hell and the treatment is helping but it’s still hard) and my body is so tired and inflamed.
    Needing support I guess. My husband is trying his best. My mom is… inept at mental health at best, a bit hostile at worst. And my poor babies (my kitty and puppy are my kids) are having a horrible time with their own anxiety and depression and I don’t know how to help them. It’s all just… a lot. Especially when I’m allergic reacting to everything. 😓😥
    #PosturalOrthostaticTachycardiaSyndrome #AutonomicDysfunction #LymeDisease #MastCellActivationDisorder #SuicidalThoughts #Depression #Anxiety #MightyPets #Migraine

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    You Know You’re Chronically Ill When…

    You know you’re Chronically ill when you’re excited to go get your birthday IV. 🥳🎈🥳
    #Birthday #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #LymeDisease #ivFluid #celebrate

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    How to Celebrate Birthdays When You’re so Ill

    How do you guys celebrate your birthday when you’re ill? I’m turning 30 and my husband and mom keep asking me how I want to mark the occasion but I have no idea. I’m mostly bed bound currently and my GI system is in revolt so I can’t eat almost anything. And I just can’t think of what to do. Plus my brain fog has been pretty bad. #Birthday #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #LymeDisease #bedbound #FeelingSeen #celebrate

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    Desperately Wanting IV Fluid

    Has anyone been able to get an IV from an Urgent Care etc? I’ve been so badly dehydrated and I can’t keep much down. I got food poisoning a few weeks ago and it completely F*&%#? up my stomach. I’ve been drinking water every ten minutes but I haven’t been able to keep down my electrolyte drinks, only my vitassium pills and extra salt on the mashed potatoes I can eat.
    But because of the horrible experiences I’ve had with ERs, Urgent Cares, and Drs I have trouble believing anyone will believe me and help. Especially since I don’t think my doctor ever put POTs as an official diagnosis on my chart.
    And on top of that I’m hypoglycemic (non-diabetic) but haven’t been diagnosed. So I’m dealing with both but can’t seem to get help. And getting my family to want to take me to the dr has been… awful. They are treating me like it’s nothing. Just my Lyme disease acting up. And our insurance ran out yesterday and doesn’t start again until the 12th.
    I’m so done. So sick of this. The only ones that seem to care are the dog and cat. (And I’m sure some of you all on here too. Hence this post…)

    #PosturalOrthostaticTachycardiaSyndrome #AutonomicDysfunction #Dysautonomia #ChronicIllness

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    Life with Tardive Dyskinesia

    hello! good to be here. thank you Thomas! Looks like a great group. I'm happy to be here. Here is the article you suggested I share.

    the below is the text to the article. there is a video on the site it comes from that is very much worth watching (9 minutes long) beyondmeds.com/2022/09/14/life-with-tardive-dyskinesia

    I’ve posted a couple of times about having TD. It is an awful debilitating, crippling and disfiguring disease caused by iatrogenic injury. I just discovered the National Organization for Tardive Dyskinesia so I thought I would share. There is very little accurate or clear information about this disease. I have avoided doctors mostly as I’ve not encountered anyone that seems like they would do anything other than harm. Neurologists who treat TD are prone to use psych meds and the MDs I saw mostly shamed and dismissed me as crazy. I did have a psychiatrist who was also a friend diagnose me and it’s very clear that I have TD. I go from being physically okay to being able to hardly stand up in the same day. I suffer from acute and chronic pain in my face, head, neck and shoulders. I am often totally unable to function as a result of this drug injury. I’ve written very little about it because this site was about recovering after coming off psych meds and well, I’ve got my mental health but I am not well. It’s likely I will never be well. My only goal now is to learn how to cope better. As readers of this site know I’ve exhausted all manner of behavioral and lifestyle healing methods. This is not an easy ride.

    (video is placed here: beyondmeds.com/2022/09/14/life-with-tardive-dyskinesia/)

    My work on TD is below. I’ve experienced it very much in my own way and written very little. Perhaps I’ll write more moving forward. My experience suggests systemic infection as it’s clearly involved with the various systemic infections I was diagnosed with as Lyme Disease. (Lyme is amorphous systemic infections that vary greatly from person to person depending on the combination of pathogens…if the organisms associated with Lyme disease is presnt you can say you have lyme disease…it seems to me many people have systemic infections complicated by heinous biofilms that don’t always get diagnosed as lyme…so I don’t really like that diagnosis as I think it’s lacking in clarity.)

    TD also varies greatly in severity. It seems the brain injury from long term use and withdrawal made mine severe in some pretty particular ways. I look forward to getting to know others with TD and am scheduled with a group support meeting at the organization that made the video.

    My pieces that include my early musing on TD: for links go here: beyondmeds.com/2022/09/14/life-with-tardive-dyskinesia

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    Does Lyme contribute to getting Stiff Person Syndrome??

    Anyone out there that contracted Lyme before being diagnosed with Stiff Person Syndrome?? I wonder, could it be a cause???? #StiffPersonSyndrome #CommonVariableImmuneDeficiency #LymeDisease

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    I’m new here!

    Hi, my name is JenniZebra. I'm here because I suffer from Stiff Person Syndrome and CVID, a rare primary immune deficiency disease. I also had a battle with Lyme Disease in 2017. I hope to connect with other zebra's! 🦓💪

    #MightyTogether #stiff-personSyndrome