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Racy Lightheaded Sweaty

I was diagnosed with sinus tachycardia with no known cause years ago probably about 8 to 10. About 3 years ago I was able to get off beta blockers and my heart rates were more stable around 80 to 85 most of the time. A few months ago I experienced a flare in my pelvic pain and was in really really high pain levels. I was also experiencing really high heart rates. From pain right? Perhaps not. Now I have been noticing more change from laying and sitting to standing. My hr is not always high just once I stand and I have had sone clanmy blood pooling type legs. Also low bos to where I pass oht/nearly do and have to sit back down. I was never given a tilt table test way back when because my ortho static vitals didn't suggest I needed one. Now my doc has referred me back to cardiology to explore further. I definitely have also been having temperature regulation issues. I have been sweating through my clothes or shivering with no rhyme or reason. Tf is going on with my #autonomicnervoussystem ?! #PosturalOrthostaticTachycardiaSyndrome #Tachycardia #Syncope

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A year ago today - My #Flashbackfriday

This was my Instagram post just a little bit ago. Thought I might share here for all my fellow warriors in case you need a bit of hope today.

Here is my #fbf .


The start of my journey after diagnosis came one year ago, thanks to many, including @malsawareness - Thank you. I can’t believe how much has happened since then. Diagnosis, diagnosis confirmation, trips to meet surgeon and have a block performed, (which for anyone reading, they asked if I was nauseous, and I said no, and then looked at my mom, and said, “*That’s* what nausea feels like? I feel nauseous 24/7.” I didn’t realize I was until I wasn’t. I also ate more and faster than usual and was seeing stars so much oxygen was getting to my brain.) and just a few short months later, surgery with that same doc. Recovery is still hard, and I am still trying to piece together what is improved from surgery, and what is other conditions. But about 6 months after surgery now, and I don’t regret it a bit. #NoFilter #nofilterneeded #forreasons #likeawesomeness #Flashbackfriday

(And, yes, I use a lot of hashtags. A new one I should add, #hashimotos.)

#chronicbadass #Fibromyalgia #fibrowarrior #posturalorthostatictachycardia #PosturalOrthostaticTachycardiaSyndrome #PCOS #PolycysticOvarianSyndrome #Hypothyroidism #ist #InappropriateSinusTachycardia #InvisibleIllness #InvisibleChronicIllness #ifight #iwin #BeBrave #Dysautonomia #autonomicnervoussystem #rosecea #Gastroparesis #ehlersdanlossyndrometype3 #MedianArcuateLigamentSyndrome #nutcrackersyndrome #IBS

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Meditation for pain management photo #

15 minutes, twice a day, the meditation has both proven results in studies and in her own life.

Xandra meditates with her eyes open. 15 minutes twice a day has been proven to calm the autonomic nervous system. In fact, in biofeedback sessions with her Pain Therapist, she's discovered that the autonomic markers tracked improve dramatically for her in just 3 minutes.

Xandra started using meditation to learn to relax her muscles when she had not just chronic pain but also chronic muscle tension. This let to much more learning about meditation and the adoption of a regular practice.

The occupational therapist who got her started on her practice, and her pain psychologist, are people she is grateful for.

She also learned techniques from Breathworks, which offers local courses in the UK and great online courses for beginners in Mindfulness Based practices for people with Chronic Illness or Pain.

She's wearing an awesome vintage T by CopiousSpareTime on Etsy.

#ChronicPain #ChronicIllness #Breathworks #Mindfulness #Biofeedbsck #autonomicnervoussystem #Barbie

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This is Me

Sea breeze in my hair as I ate fish and chips on the dock..... You’d never know this was my first “major” outing after spending just shy of a week in hospital for open surgery, and being discharged this past Wednesday. It’s the little things, like the baggy clothes I had to go out and buy because nothing I packed fits from the bloating post op. The hospital band and “allergy” band still on my wrist. The visitation sticker from visiting one of my “surgery buddies” who got bumped to this week instead of this past week. The anti nausea patch behind my ear. The meds in my system, and my mom’s phone going off that the pharmacy in her purse that was filled at discharge needs some dispensing. The little “Zipper Buddies” stuffed fox I got for me and my surgery buddies clutched tightly to my chest to hold my incision in case I cough or sneeze or laugh. This is the face of someone who is fighting. It’s a long recovery, but I have been blessed with magnificent doctors, and an amazing new set of friends going on the same journey, and we are figuring this out together. From walking the hallways hunched over in walkers in pain from the 5”-ish long incision, to standing straighter day by day, and trying to breathe through the pain, as we shuffle in our “fall risk” grippy socks. And this surgery only tackles one diagnosis. But I’m just gonna keep shufflin’ in my grippy socks that say “Slay” on the bottom, and live up to what they say. This is what rare looks like. This is what MALS looks like. This is what chronic illness looks like. This is what one semi good day looks like. This is what I look like. #filter #filterneeded #forreasons #likeawesomeness #mylightingsucks #ChronicIllness #chronicbadass #Fibromyalgia #fibrowarrior #POTS #posturalorthostatictachycardia #posturalorthostatictachycardiasyndro me #PCOS #PolycysticOvarianSyndrome #Hypothyroidism #ist #InappropriateSinusTachycardia #InvisibleIllness #InvisibleChronicIllness #ifight #iwin #BeBrave #Dysautonomia #autonomicnervoussystem #rosecea #Gastroparesis #ehlersdanlossyndrometype3 #MedianArcuateLigamentSyndrome #nutcrackersyndrome #IBS