ehlersdanlossyndrometype3

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 .

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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

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