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Hi! I'm here because I want to learn more about recent diagnosis for chronic Lyme & dysautonomia (still figuring out what) & treatment options. I do have other co/chronic illness as well.

#MightyTogether #Migraine #Dysautonomia #CeliacDisease #LymeDisease #chroniclyme #sibo #EBV

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Bad Bugs and Pug Tales

I forced myself out the house on the weekend to harvest the first of the wild garlic crop in nearby Castle Combe. We also stocked up on cow parsley and fresh pine shoots for tea. It’s said to help with a sore throat, which I can certainly use right about now after all the antibiotics I’ve been taking to try and eradicate my B. Hominis. I caught it about 10 years ago but the doctors didn’t even bother testing for it though I had chronic diarrhoea for several months on and off. Finally, I’ve managed to get the antibiotics recommended on the Bad Bugs website from Australia, which I highly recommend reading if you suffer with IBS, as I had no idea that I actually had two kinds of amoebic parasites which have been fermenting in my stomach, causing leaky gut, and stealing my nutrients for several years now!

Pugmix The Duke wasn’t exactly pleased with the wild garlic foray—bit too stinky for his liking—but we wandered over to a nearby stream and he was quite taken with the small waterfall which I captured him staring at in curiosity. Energised from his swim, he had himself a quick romp through the field before heading home for a nice traditional Sunday roast for us, and some raw duck for The Duke cause Duck Tales make his dreams come truuueeee, whooh oh 🎶

Oh and true story, I was today years old when I found out that You Make My Dreams Come True and Duck Tales are separate songs, albeit with a very similar melody 😆

#IrritableBowelSyndromeIBS #sibo #LeakyGut #MightyMusic #MightyPets #DistractMe #MyCondition

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Sick tax

I missed the deadline for trading in my phone and now have to pay $400 more for my phone. I have had a tough month, just started on LDN for pain and I've been meaning to send it in. I've been super anxious and just couldn't bring myself to do it until today. I think I am four to five days late. I hope they have a grace period, but at this point I think I am just fated to never have any money. I spend $200 out of pocket a month for an out of network doctor, $250 for vitamins that are supposed to help, now my LDN is $65. My rent is going up and I have three roommates. I am never going to be able to live by myself. FML. #Anxiety #Depression #ChronicPain #sibo

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How do you cope with life?

Can we start a thread on coping skills for dealing with the sensory overload that goes hand in hand with chronic illness? We are constantly in a state of overwhelm in a room all by ourselves, and when you add in daily life and all of the outside stimulation… life just sometimes gets to be too much. I’m just curious to see what other warriors do to survive and keep their sanity in tact.

A little backstory: I’ve basically been on a journey to find myself and figure out my place in the world since well my whole life. But due to a car accident in 2006 that resulted in a TBI, I’ve been living with un-acknowledged amnesia and I forgot my self. I recognized all my loved ones, and I remembered how to do basic life skills… But I forgot the essence of me, including all my childhood memories. However, the subconscious works in amazing ways and my amnesia was recently cured. Granted it was cured bit by bit over the last almost 16 years via signs from the universe, and triggered memories. The most recent traumatic experience I endured was a narcissisticly abusive relationship, that I thankfully escaped, but I’m pretty damaged from it. On this healing journey I’ve been on since April, I’ve realized a number of things about my inner workings. I have A LOT of sensory processing issues that I’m trying to figure out how to live life with. I’ve discovered I’m dyslexic, and suffer with dysphasia. I also have figured out the reason I hold on to all my traumas and can’t forget them, is because I have Hyperthymesia, an autobiographical memory, emotions and all. I was diagnosed with ADD in elementary school, ADHD in high school, but truth be told I’m pretty sure I have Asperger’s. Also a little Williams-Buren because I want everything to be happy and loving in my life, I can’t thrive in chaos.

So I will kick off the thread by sharing my coping skills:
Art & Journaling
Loose fitting clothing
Calming music/ocean sounds
Teaching myself ukulele
Keeping hydrated
Munching on a healthy snack
Researching medical reasons for my oddities
Medical cannabis
Shaving my head
My electric blanket
Watching documentaries on Netflix
Learning to set and honor my own personal boundaries.

Please share yours tricks and tactics for navagating life, feel free to share links for products you can’t imagine getting through life without too! #ChronicIllness #InvisibleIllness #HEDS #POTS #NMH #Fibromyalgia #MyalgicEncephalomyelitis #neurodivergent #MentalHealth #sibo #TraumaticBrainInjury #learningtocope


I Need Some Positive Words ... Feeling a little down ...

What is something positive that you could share with a chick that needs to feel a little more upbeat? I want to get out of this funk so much. Anything POSITIVE or encouraging or motivating is welcome. Or if you need to vent, that's okay, too!

#Anxiety #Depression #BipolarDisorder #Bipolar1Disorder #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #Narcolepsy #prolactinoma #sibo #smallintestine bacteriaovergrowthsibo #RaynaudsPhenomenon #LeukocytoclasticVasculitis
#SpinalStenosis #Lumbarfusion #SpinalFusion


Oh lol

Cardiologist says I have tachycardia, so that's fun.
Also did a breath test and it turns out I have SIBO so I'm currently getting treated for that (icky tho).

They did an abdominal ultrasound that showed mild enlargement of my liver (benign so my doc isn't worried about it) and a small non-obstructive kidney stone.

It's been a while since I've been on antibiotics so I gotta ask - while I'm on antibiotics (doxycycline and flagyl), can I eat normally throughout the day (when my appetite exists)?

#sibo #Tachycardia #HEDS #antibiotics #questions


Significant Others taking on too much

How do you navigate what is too much for your significant other in terms of support? #sibo #Depression #Anxiety


Anyone with #PosturalOrthostaticTachycardiaSyndrome ran a fever 🤒 when water in a shower has been run over your head?

Do any of you #Potsie s run a fever when you take a shower? Spike in heartrate? Drop in blood pressure? You think that you may pass out? But, if you take a bath it isn't as bad, but you find your hygiene suffering? I find that even taking a bath, I have to cover my head with water. What do you do to get through this? I'm on medication, but I can't go on a higher dose cuz of side effects. You know how people feel so "refreshed" and "revitalized" after a shower; that's not me. I feel such a itchy and sticky feeling - like I had just gotten back from the gym (and I don't use hot water - so it's not dry skin) - does anyone else have this? or my heartrate goes even higher afterwards and during. It's not when I get my body wet, just my head. Or I will run a temperature about 100°F for no other reason. And no hot water. Does this happen to you, too? I absolutely hate the way that a shower makes me feel in regards to physical symptoms. I hate that I can't take a shower before a doctor's appointment, because then I'd run a fever when I got there and they'd make me get a covid test (which would normally make sense - so I just don't take a chance).

So, who else with #PosturalOrthostaticTachycardiaSyndrome or any other #ChronicIllness has a terrible reaction to water being ran over top your head? Horrible, huh?!

#Anxiety #Depression #PsoriaticArthritis #Narcolepsy #Gastroparesis #sibo #sbbo #ObsessiveCompulsiveDisorder #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #prolactinoma #PolycysticOvarySyndrome #Migraine #SpinalStenosis #SpinalFusion #Lumbarfusion #Potsie #BipolarDisorder #Bipolar1Disorder

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Is anyone else scared to sleep with the lights out?

My sleep doctor has a fit everytime that we discuss this. But, trauma has caused me to need to sleep with the lights on. Does anyone else have this problem?Even a lamp won't do. I feel like the light is a warm blanket. Does anyone have any suggestions for getting through this? My sleep hygiene is horrible 😫.

#Anxiety #Depression #BipolarDisorder #PTSD #PsoriaticArthritis #Narcolepsy #Gastroparesis #sibo #sbbo #ObsessiveCompulsiveDisorder #Undiagnosed #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #Upallnight #prolactinoma #PolycysticOvarySyndrome #Migraine #SpinalStenosis #SpinalFusion #Lumbarfusion

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What's your FAVORITE comfort beverage? Mine is Chicory Coffee ☕️!!!!!

So pull up a mug/glass/cup and chill with the Shanster!!!! Allow yourself to take some comfort in yourself and enjoy a special warm or cold beverage that meets your fancy!!!! 😃😃😃😃😃

#Anxiety #Depression #PsoriaticArthritis #Narcolepsy #Gastroparesis #sibo #sbbo #ObsessiveCompulsiveDisorder #Undiagnosed #COVID19 #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #funactivities #prolactinoma #PolycysticOvarySyndrome #Migraine #SpinalStenosis #SpinalFusion #Lumbarfusion #Comfort #warmth #Love #caring

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