#atypicalHUS

MOST RECENT

Counting down the weeksπŸ“† 'til I march straight outta here, #offthegrid like I did last year for a month or few!! πŸ˜ŽπŸšΆβœŒπŸŽ’ This time I have no clue where I'm going. I have an initial destination, but from there, I'm just gonna get in the car and decide if I want to πŸš— east or west. πŸ›£ I really want to go west coz life w/o πŸ” is an odd feeling, but my logical brain tells me that I should conquer the east while I can. All I know is that neither the body nor I are gelling as well as I hoped with the present environment..the air is energetically noxious & I'm being depleted faster than I can recharge, but I'm figuring this out slowly, but surely. I had a disheartening realisation this week that I will be managing & supporting myself through this illness on my own because of the flawed healthcare system & lack of monetary, financial & emotional support for ultra rare diseases & that the research I thought I would be participating in & furthering to help the 300Β± patients afflicted with #atypicalhus worldwide is nonexistent here. 😒 But that's a whole other topic of discussion & another challenge that I'm embracing! 😢 And today, I felt unsettling emotions that I haven't felt in 3-4 years...I 😭, I miss all my families, my #tribe & at times, I desperately want to go home (ETπŸ‘½ πŸ“ž home). So I need a "reset" & a big ass HUG or few...don't be shy, I don't bite!! 😬 Lastly, just wanted to say a big TY to two humans who did not know that they saved me this week!!πŸ’– @marypinelli @susanarete πŸ”½πŸ”½πŸ”½πŸ”½πŸ”½πŸ”½πŸ”½πŸ”½πŸ”½πŸ”½πŸ”½πŸ”½πŸ”½πŸ”½πŸ”½πŸ”½πŸ”½πŸ”½πŸ”½
#picturethis365
#181_straight
#mytravelgram
#from_your_perspective
#lostinnature
#lostinlandscape
#seeyourearth
#neverstopexploring
#exploreeverything
#everything_imaginable
#myalaskadream
#sharingalaska
#alaskanadventures
#exceptional_pictures
#tagmyfoto
#alaskatribe
#ig_myshot
#travellers_captures
#scape_captures
#nikon_nature
#sheisnotlost
#girlsadventuring
#myhappyplace
#optoutside
#hikingtheglobe
#hikersofinstagram
#shetravels

I hate to make you all jealous ;), but I received my complement poster in the mail today from an awesome research source!! So excited for this and for an upcoming announcement regarding complement! 😁The things that make my day! #raredisease #atypicalhus #bigthingscoming

My #WomanCrushWesnesday goes to this little firecracker. She has always been a fighter. If you tell her she can't, she'll die trying to prove you wrong.
β€œShe's been through more hell than you'll ever know. But that's what gives her beauty an edge... you can't touch a woman who can wear pain like diamonds around her neck." I am so proud of the woman she is today because it took a hell of a time becoming her. #Survivor #Fighter #BellsPalsy #AtypicalHUS #ProjectSideSmile

This is one I haven't heard yet! πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚
#CrohnsDisease #atypicalHUS #PostThyroidectomy #ChronicMigraines
#YouCantCureMe #StopTrying

Going through pictures this morning and had to share this with you guys. The picture on the left was the day before my kidney transplant, I was holding up the shirt I would be going home in, with my new kidney. The picture on the right was taken just a few weeks ago, same shirt, same person, only now I am almost three years post transplant. The left is what life on dialysis looks like. And the right? That's what life looks like with a living donor. With a donor there is LIFE. Without organ donors the world is dark, there is no hope. I am thankful for my living donor, Christine, every single day and I think of her every moment. I wouldn't be here today without her and her life-saving gift. We make three years on May 20th of sharing a bond that only few share. Consider becoming an organ donor, consider saving a life. It saved mine. πŸ’š #organdonationawareness #organdonation #livingdonationsavedmylife #donatelife #shareyourspare #dialysiswarrior #dogsfordonation #kidneytransplant #kidneydisease #transplantlife #transplantSTRONG #immunecompromised #spoonie #chronicallyfabulous #chronicillness #atypicalHUS #aHUSstrong #risingaboveaHUS #icarebecauseimRARE #rarediseaseawareness #iamalive #gratitude #goGod

Apparently this week is NURSES week. For me, every week is nurses week! (Haha) I have had some incredible nurses in my lifetime (and still do). I see you all, week after week, tired, hungry, stressed, overworked, underappreciated, but you know what else I see? That lifesaving sparkle in your eye that drives you to keep going no matter how hard things get, to help the next patient, to save the next life. I. See. You. I am so thankful for each nurse I've had and the relationships I've developed with each one, whether it be just a passing minute, to years worth of bonds. I've had nurses see my bad days, my good days and everything in between and they still took care of me through it all without judgement, just caring. Nurses truly are angels. Make sure to thank the nurses in your life, not only today, but everyday. So thank you to all the nurses, from a grateful spoonie. #nursesrock #nursesweek2018 #nurses #thankanurse #chronicillnesslife #spoonie #morespoonsplease #transplantSTRONG #transplantlife #aHUSstrong #atypicalHUS #chronicallyfabulous #chemonursesrock #infusion #dialysisnursesrock #dialysiswarrior #ernursesrock #floornursesrock #nightshiftnursesrock #allnursesrock #thankyouforallthatyoudo #angelsindisguise #weseeyou #gratitude

It's been a rough infusion day, but I'm incredibly grateful that I am able to have access to the lifesaving medication Soliris to not only protect me, but my little kidney bean. Always grateful, even on the tough days. ❀ #soliristhewonderdrug #infusionday #aHUSstrong #atypicalHUS #rarediseaseawareness #kidneytransplant #transplantSTRONG #transplantlife #benadryl #prednisone #infusion #gratitude #goodandbad #iamalive #selfcare #recover #medication #icarebecauseimrare

Celebrating BLUE & GREEN day with my girls. They are thankful that a LIVING DONOR saved their mommy's life on May 20, 2015. My organ donor gave me a life worth living and so much more. Consider becoming an organ donor today, ❀ #blueandgreenday2018 #donatelife #livingdonationsavedmylife #becomeanorgandonor #organdonationawareness #transplantrecipient #recycledpartsinside #kidneytransplant #shareyourspare #transplantSTRONG #aHUSstrong #atypicalHUS #kidneysneeded #gratitude #dogsfordonation #secondchances #givethanksgivelife #iamalive

Today, I #passthecape to my dear friend @jul.12345xo who embodies what it means to be a caregiver & hero. Being a caregiver requires unyielding, uncommon strength, determination, compassion, love & patience to name a few & this young lady possesses all of those qualities! Please #passthecape in honour of her & other caregivers who volunteer & devote their time to caring for persons with illnesses & #rarediseases like myself. I salute you @jul.12345xo & all the other caregivers whom I met at the aHUS Foundation & of course, my fellow aHUS warriors.πŸ›‘ You are all my family...you are all my heroes. πŸ’˜πŸ’˜πŸ’˜ @donnakolp
@amberschlaht @gwendolynblaine @blaine.broussard

#Repost @the_atypical_hus_foundation (@get_repost)
・・・
A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.

Nominate your aHUS Superhero here: www.uncommonstrength.com

#aHUSstrong
#ShapingOurPathForward
#RareDiseaseDay2018
#uncommonstrength
#atypicalhus
#hero
#ahusfoundation
#ahusawareness
#awareness
#raiseawareness
#globalgenes
#superhero

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