#mastocytosis

MOST RECENT

Breathing is fun I guess #mastocytosis #bendyspoonyfuntime

Today is our Masto diagnosis anniversary ... we thought bad allergy to peanuts, corn, dairy. Not once did it cross our mind that this was bigger then life.

Our world was flipped upside down as we frantically researched, looked for answers, cures, treatment, begging for normalcy. We were drowning in restrictions and measures to keep you safe. We were warned to be prepared for the worst, to never for one moment let our guards down, as this disease was so unpredictable and so fast we could lose you in a minute.

I use to think when you were young, limited verbally, unable to explain to us how you felt, internal symptoms etc was the toughest years. But now as you grow, mature, seek more independence and are so much more aware of your body ... this has been the toughest yet as I slowly have to pass the torch. Trusting you to know, trusting others who care for you to know ... trusting the universe to just let you see tomorrow is what I beg each night as I try to sleep.

Girl you’ve climbed this mountain with grace, humour, love and determination. We are so proud and so honoured to climb it with you!! Fuck You Masto ... this girl is kicking your ass! #mastocytosis #mastowarrior #myhero #servicedogsofinstagram #servicedogteam #kickingass #parentingistough #wevegotthis

My dogs meeting my handsome guy 😇 my service girl Ginny (on right) was a little weary of him because he gave me a hug and tried to cuddle with me and she didn’t appreciate that. But after I hugged him and he gave her a treat she was alllll good. Question: what’s the biggest struggle in a new relationship for all you spoonies out there? Answer: for me it’s when you want to be ambitious and out there and be the person your inner healthy soul is trying be but your crappy body is like “tomorrow? Or please put in maintenance request and we’ll get back to you within 3-5 business days” and I’m like ughhhh babe can we just stay in and cuddle? But he’s really understanding, and he always asks if I’m ok or if I need anything and he still talks to me like a person ❤️ I love that he doesn’t just go about freaking out over every little thing, he knows if I need help I’ll ask. He’s my biggest support, and I know that he’s on my team. #ehlersdanlosawareness #tachycardia #ehlersdanlos #mcas #loosejoints #mastocytosis #chronic #chronicpain #chronicgirlz #chronicillness #chronicfatiguesyndrome #naps #napqueen #spoonie #spooniesisters #ehlersdanlossyndrome #ehlersdanlosawareness #type1diabetes #diabetic #dogs #meettheboyfriend #love #painsomnia #palpationnation #hlh #pots #wheelchair #wheelchairgirl #diet

Chillin like villains in Port Colborne urgent care. #mastocytosis #raredisease #allergicreaction #littletrooper

I started painting again, in all honesty I only painted one and didn’t even finish it, but as you can see my desk is covered in UAMS medical cups from previous surgeries 😂 I have about a dozen of those cups. Happy smiles! Hope everyone is having a good day! #howwasyourday #diabetes #ehlersdanlos #chronicgirlz #chronicfatiguesyndrome #chronicpain #chronicillness #chronic #zebra #pots #tachycardia #palpationnation #art #mastocytosis #ra #mcas #wheelchair #wheelchairgirl #love #loosejoints #ehlersdanlos #ehlersdanlossyndrome #ehlersdanlosawareness #painsomnia #type1 #heal #hlhwarrior #hypermobility

Gotta keep moving forward! Encourage yourself and be the encouragement for someone who can't see the light at the end of their current tunnel... Sometimes our tunnels are long, dark, and lonely!

#chronicillness #mastocytosis #lifethreatening #idiopathicanaphylaxis #doforotherswhattheycantdoforthemselves #honeybadgertraining #vital #essentiallyfundamental #stacycoggins #thestacycoggins #useyournailbrush #putyourmakeupon #putyourcufflinkson

He looks so big to me most days, but lying in a hospital bed he just looks so small.
My son went into anaphylaxis this morning. His Mastocytosis was not playing nice.
In this photo, they were monitoring his heart.
He's okay now. I'm praying for NO rebound reactions because there is no one manufacturing epi that we have access to.
I am still shaking, and he is calm and a little grumpy.
#raredisease #mastocytosis #ilovemykid
#momlife

Question, with my hair starting to grow back from the chemo, do I rock the salt and pepper look or color?
And, I must say my lashes are fabulous and give me life 😂
Also, thank you Jesus for my face finally going down. #mastocytosis #systemicmastocytosis #thisisme #mystory

“Happiness is a butterfly, which when pursued, is always just beyond your grasp, but which, if you will sit down quietly, may alight upon you.” - Nathaniel Hawthorne 🦋 // For me, a difficult part of chronic illness is learning not to equate happiness with my current state of health.
One should not necessarily be contingent on the other. It’s been an enlightening lesson, as I’d surely be a miserable, downtrodden person if that were the case.

I miss coming home tired after working a 10 hour shift.
I miss the struggle if unloading truck, writing a schedule and training staff.
I miss resets, and my patients.
I miss working in a drug store. I miss being a Pharmacy Tech. I miss all of it.
I'm tired now, from my body trying to function. I'm the patient now, standing in line at the drug store. I'm the unhealthy one.
I want it all to go away, and I want my life back. One day, one step at a time. I will be well enough again to work. I am determined, and nothing stops me from getting what I want. I've never let anything stand in my way, and I refuse to let my own body stand in my way. My doctors tell me that I am strong, intelligent, and resilient. I know that I will never be able to work the physical job I had before.
But something, and I will figure that something out.
I will not give up on my dreams because my body is trying to give up on me.
#ehlersdanlossyndrome #portacath #gastroparesis #smallfiberneuropathy #posturalorthostatictachycardiasyndrome #vavularheartdisease #valvulardisease
#osteoarthritis #osteoporosis #aquiredhemolyticanemia #mastocytosis #dysautonomia #migraines #anxiety #crps #fightlikehell #stronger #chronicpain #chronicfatigue #imforgettingsomething #lististoolong

Let's talk perspective. I have a mast cell disease which, if you follow me, will already know. In November 2016 my symptoms went from mild to severe. I've had it my entire life and had symptoms of it when I was a child. If you look back through pictures of me you will inevitably see pictures of facial flushing. As a child I could only spend a short period of time out in the sun at a time. If I spent even an hour in the sun I got extremely ill. My pediatrician said that I was allergic to the sun. My symptoms improved around 14 and didn't come back until I was 26. My Immunologist said that puberty put me in partial remission. From 11/16 to 3/18 my symptoms were severe. 5+ minutes in the sun or outside during the winter resulted in rashes, hives, erythema, tachycardia, itchiness, and often difficulty breathing. I've joked about how it makes me look like I have a venereal disease of the face. Thursday I went to get my bi-weekly Xolair injections. I saw my doctor(who had left for her research year of fellowhsip) who said that this was the best she's ever seen my face. I've been so preoccupied with how bad my pain has been that I hadn't realized just how much better I've been doing. We don't exactly know why I'm doing better but I'm doing better. Meds obviously play a role in this but why didn't they help earlier?! We don't always know WHY I'm reacting or what I'm reacting to. In the same sense we don't know exactly why it's better. In 2017 my doctor(the one who came back) kept saying that we needed to "restart" my immune system. I know that it won't last forever and I am a difficult case. I know that when I start flaring badly again we will start to consider other options. That said, I am extremely grateful to have such a better handle on it for now. #mastocytosis #mastcelldisease #hives #angioedema #urticaria #pruitis

‪Morning. Some photos from the mountain rescue day that @WellChild invited me to. I have a great time. I even fell in the water and was rescued. It was brilliant. #teamzebedee #zebedeemanagement #disabledmodel #EhlersDanlosSyndrome #mastocytosis #adhd #childmodel

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