#Mals

I had my consult with Dr. Hsu today. I honestly went in with extremely high expectations because I love Dr. Kane so much. I don't feel as 'at ease' as I did after my consult for my last surgery, but I do have a bit of a plan now. I am going to get the celiac plexus block, hopefully at Penn to cut down on travel, and we will go from there. We agreed that even if it is successful we won't do the surgery for at least another month and that made me really happy. I can't miss any more of my life right now! I am (barely) juggling OT school, traveling for all my appointments, keeping a job, and running @cardsforwarriors ... I don't exactly have time to undergo a major surgery right now. I'm not saying heath isn't important, but I am saying that doing what I love is equally as important to me. Going to appointments in 4 different states in the past two weeks is extremely exhausting, and on top of that, hearing that I will most likely need another surgery has just been really hard to be honest.
#posturalorthostatictachycardiasyndrome #POTS #dysautonomia #gastroparesis #tubie #GJtube #MALS #medianarcuateligamentsyndrome #MALSrelease #postop #EDS #ehlersdanlossyndrome #amplifiedmusculoskeletalpainsyndrome #AMPS #CRPS #complexregionalpainsyndrome #chronicpain #invisibleillness #butyoudontlooksick #spoonie #spooniestrong #peoplehopetribe

4πŸ’¬

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Layka, my favorite war hero, is back in a new documentary called War Dog: A Soldier's Best Friend. Watch the end of the clip. So precious. 😍😍😍
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#maligator #dogloverΒ  #shepherds #instamalinois #dogsofinstagram #dogs #dog #belgianmalinois #mals #belgianmalinoisofinstagram #malinois #malinoislovers #malinoisofinstagram #germanshepherd #gsd #gsdloverofinsta #gsdofig #gsdofinstagram #dogsofig #furmissile @jokerthemal

0πŸ’¬

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SΓ₯ stilig! 😍😍 imorgon kommer han Γ€ntligen hem!! πŸ•β€οΈπŸΎ #alaskanmalamute #malamute #bigdogsrule #mals #puppies #puppiesofinstagram

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My Malamutes decided to help themselves to 1 1/2lbs of frozen lamb chops while I was grooming tonight. I was thawing those for a stew. πŸ˜₯ #baddog #bigtrouble #baddogs #guiltyaf #guilty #canthelpthemselves #malamutes #alaskanmalamutes #timeout #lambchops #mally #arcticdogs #wolfdogs #notahusky #mals #rawdiet #malamutesofinstagram #alaskanmalamutesofinstagram

2πŸ’¬

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This is my daughter she is having emergency live saving surgery today please read www.justgiving.com/crowdfunding/help-destiny
#model#modeling#help#eds#mals#beautiful#lifeback#surgery#rare#syndrome#nutcracker#

2πŸ’¬

Tomorrow Night Static with Yo Boy Dj Worth . No Cover plus Drink Specials all Night.
#malsbar #mals #malsdtla #downtownla #losangeles #thisisla #LA #djworth #wortyworth #worthit #barlife #bars #labars #music #hiphop

1πŸ’¬

Six weeks ago today I underwent MALS surgery. I cant even being to express how blessed I feel to have had the opportunity to repair my body which was breaking down, but to have had such an easy recovery. My incision is healing beautifully, my ribs only ache on occasion, my MALS pain is GONE!, and my body is showing signs of healing itself every day. The little things are such huge signs- my hair is no longer falling out in clumps, my eye lashes are starting to grow back in, the spots on my fingernails aren't multiplying daily, my skin is improving, and that's just a few. I'm still in a POTS flair and Gastroparesis is still bad, but i know these too will heal with time, just as I know my digestive system will continue healing and relearning how to work. There is a ton of controversy with this surgery, but i am confident it was the correct decision for me and it's obvious the compressed Celiac Artery was truly affecting my blood flow and the health of my organs and body. Thank you to everyone who has helped and provided and prayed for me and the family, we are truly grateful! I am feeling better and stronger every day and i know soon this will be all behind me!
#mals #medianarcuateligamentsyndrome
#celiaccompressionsyndrome
#pots
#posturalorthostatictachycardiasyndrome

5πŸ’¬

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Today marks my one year MALS "surgiversary." I'm not sure most people get the privilege of looking back and seeing exactly what moments changed their lives forever, but there are two in recent years that I can find.
The first was the car accident in February of 2015--an accident that, for whatever reason, took all my previously controlled symptoms and made them entirely uncontrollable. This started me on a path I never would have imagined and tossed me completely off the path I thought I was going to take. I still haven't finished college, and instead my time and attention have turned to educating and encouraging POTS patients and, to an extent, the wider world.
The next event that changed my life was my MALS surgery--but not just because it got rid of my MALS. I mean, don't get me wrong, that's pretty life-changing--but it's what happened after that's really amazing.
In the year since my surgery, Mom and I have both been working hard to raise awareness for MALS. We started the MALS Awareness Facebook page, which has reached over 15,000 people, and Mom spearheaded a support group for Dr. Hsu patients that has helped so many people through the planning and recovery process. Not only that, but my friend Makanda's MALS diagnosis was found because of my own--which is, perhaps, the craziest thing of all--but that's a longer story for another day.
This year has not been easy. Surgery recovery was hard, and I spent months in a nausea-induced and fatigue-riddled Suckfest. My MALS pain is gone, but all my other conditions remain--and we're still looking to see if there are pieces to the puzzle that we haven't found yet. I can't say I've had an "easy" day in...well, years, I guess--but I can say I've had fulfilling days.
When I look back on this year, I'm amazed at all that's happened. It's incredible to see just how much God has used my crazy, sucky situation to do absolutely wonderful things. On my own, none of these amazing things would have happened--but, as we Christians so often say, the Lord works in mysterious ways. And as I look back on this year, I can attest that the phrase is indeed true. #surgiversary #mals #medianarcuateligamentsyndrome

9πŸ’¬

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Vinschgau#Mals#Tatscher Bichl#

0πŸ’¬

Feeling HAWT 🀣 sleep study last night. First step in getting tested for #narcolepsy. #vlog is up with the details 🎬 random thought I wish there were more medical emojis

51πŸ’¬

Zin in een heerlijke avond? Deze Lamsrack smaakt net zo goddelijk als het eruit ziet... ✌🏼😍 We hebben nog wat tafeltjes vrij dus laat ons topteam je lekker in de watten leggen! Reserveren kan gemakkelijk via www.bomenpark.nl. Bedankt voor de prachtige foto @gsleffelaar!πŸ‘ŒπŸΌ

7πŸ’¬

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when the bloat is real ! due to my duodenum being more than 70% obstructed I get the constant bloat. But.....good news ! My doc is trying to schedule surgery for my MALS and SMA syndrome ! Hoping to be able to eat good food by Christmas! #MALS #medianarcuateligamentsyndrome #malsawareness #smasyndrome #pots

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