#mastcellactivationsyndrome

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You know you're a #sickie if you drink #Pedialyte like it's juice 😂😂 This Mixed Fruit is my favorite flavor but I want to try the new 33% more electrolytes in Strawberry Kiwi Mist flavor 😍 a few other sounded bomb too! Anybody tried them? What's your favorite Pedialyte flaavaaa 😂😍 . . . #mastcellactivationdisorder #mastcellactivationsyndrome   #mcad #mcas #ehlersdanlossyndrome #eds #hypermobility #stretchyjoints #swelling #inflammation #gastroparesis #tachycardia #posturalorthostatictachycardiasyndrome #pots #syncope #pain #chronicpain #chronicfatigue
I've been so MIA from social media lately!! I was online so much for so many weeks during the making of my Mast Cell Activation Syndrome Series (linked in bio), that I just really needed a break. I've been spending lots of time with all of my lil fur babies, my family helped with a search and rescue for a sweet little lost dog for 3 days (she's back with her family now), I spent time with family, and I've been doing TONS of work for a new business I'm starting extremely soon. 😉 Love & Light to you all. 😊💖☀️
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Update: This Friday I will be heading down to Seattle to start the testing for Lyme disease, Lupus, Internal Parasites, POTS Syndrome and more chronic illnesses. I am actually not fearful of this, I have high hopes that this specialized doctor that I seeked out will do what she can to get me the care that I desperately need. The outcome of these tests could change my life, as I know it right now, but I’m trying not to focus on that and instead focus on being one step closer to treating myself. 👍 ✨ ✨ ✨ #chronicillness #mcas #spoonie #mastcellactivationsyndrome #seattle #chronicillnessawareness
This #heat has me so #nauseous I can hardly even eat this half sammich 😣😣 I'm afraid if I don't tho I'll #faint !! #IV tonight will hopefully help and I'll probably pick up some #Pedialyte 🌟 . . . #mastcellactivationdisorder #mastcellactivationsyndrome   #mcad #mcas #ehlersdanlossyndrome #eds #hypermobility #stretchyjoints #swelling #inflammation #gastroparesis #tachycardia #posturalorthostatictachycardiasyndrome #pots #syncope #pain #chronicpain #chronicfatigue
My mom tricked me yesterday 😣 She took me to lunch then dropped the.. we're going to get your blood drawn!! Ahhh... She's tired of getting calls from the doctors office so I really did need to go 😂 Thanks for making me go anyway momma, even if I was grumpy about it 😂😙 . . . #mastcellactivationdisorder #mastcellactivationsyndrome   #mcad #mcas #ehlersdanlossyndrome #eds #hypermobility #stretchyjoints #swelling #inflammation #gastroparesis #tachycardia #posturalorthostatictachycardiasyndrome #pots #syncope #pain #chronicpain #chronicfatigue
Why. This question has popped up in my head quite a bit, this week especially. Why is my body not responding to treatments? Why do doctors not have all the answers? And yesterday, the question seemed to be why did we get into such a bad car accident. My mom and I were on our way to Brigham And Women’s, when it turned into one of the scariest days of my life. It all happened so fast, which is fine by me.  We got out of the car, and my mom passed out on the side of the highway. The fumes from the car sent me into anaphylaxis on top of everything else. The EMTs arrived and quickly had me on a stretcher and hooked up to an oxygen mask and heart monitors because I was pretty tachycardic. Side note; placing an IV in a moving ambulance when you have crappy veins? Yeah that was interesting. My EMTs were so kind, and he held my hand in the ambulance since my mom and I were separated. He even tried to understand MCAS and explain it to the doctor upon arrival, since I couldn’t speak. X-rays & ultra sounds were done to check for internal bleeding, but I am grateful to only have a badly bruised collar bone, back, and stomach. My mom is badly bruised as well. The anaphylaxis was pretty bad though. It took 5 breathing treatments and two rounds of IVs to bring my breathing back to semi normal. We’ve made it to Brigham’s finally, and I still don’t know why. I don’t know why all of these things happen. Why there’s been so much pain and heart break on this journey. But I’d change the question and ask why did God spare my mom and I? Why has He been so faithful in every moment I’ve complained? At the end of the day, I know God is good, and that’s enough. (An update from today’s meeting with my specialist team will be soon. Still so much to get my head around😬) #spoonie #chronicillness #dysautonomia #mastcellactivationsyndrome
It's tote your dog Tuesday! Today's video is brought to you by @blueoctoberband (go pre-order their new album to get some instant downloads of a few singles!) and an overweight dog. Colby has some health issues that are causing him to gain weight no matter what diet and exercise plans he's on. Mix that with my small shoulders and you get a wobbly, lopsided tote. 😂 Add on a knee brace for my connective tissue disorder and it makes for an entertaining sight. I'm so excited to see the boys (@blueoctoberband @willknaak @tufstrings @harvard_of_the_south @mattnoveskey ) next weekend and I'm excited for the new album. Y'all are doing amazing things and touching so many lives. 💙 - - - #lifehascolors #peoplecanchange #staysticky #blueoctober #pots #posturalorthostatictachycardiasyndrome #mastcellactivationsyndrome #endometriosis #pcos #migraines #seizures
breathe // This is the shirt I wear when I feel like I have nothing more to give. • There will always be hard times, but what we do in these hard times is what determines our character. •
Had to get some corn allergy humor out there today! 😂😂😂 #cornallergy
On the way home from Arkansas; my GI appt went really really well! She wants to see about getting a PICC line or a Port placed, so I can do at-home saline infusions since I’m having such a hard time getting fluids, and even banana bags to boost my low vitamins. I am so so happy about this as it would really help my health and quality of life improve! I’m scheduled to see my new allergist tomorrow and my hematologist the day after (I may have to begin iron infusions, so a PICC/Port would be handy) and my GI wants their opinions on this, so I’m a bit nervocited about it all. It seems a strange thing to be happy about, but when you’re without water in a scorching canyon, you leap when someone tosses you rope. #spoonielife #spooniestrong #gastroparesis #piccline #port #mastcellactivationsyndrome #mcas #ehlersdanlossyndrome #fibromyalgia #potssyndrome
One thing I don’t think I’ve mentioned is that I’ve had surgery on my left shin three times (ages 13, 16, and 23) to remove a recurrent internal hemangioma. A hemangioma is a benign tumor made up of excess blood vessels that usually presents itself as a birthmark on the skin (often referred to as a “strawberry mark”), but can sometimes occur internally, like in my case. Its location on my nerves has meant that my shin has always been super sensitive to the touch, and any sort of pressure — no matter how light — causes immense pain. I’ve dealt with that sensitivity for as long as I can remember, but the hemangioma wasn’t discovered until I was 13, when it started to cause extreme pain that was made worse by simply walking. Unfortunately, because it’s located on my nerves, it has never been 100% excised, and has grown back twice. My last surgery resulted in a very long and tough recovery; what should have been a two-week recovery period turned into six months. After countless PT sessions, the foot drop I developed went away, I excitedly said farewell to my annoying AFO brace, and was finally able to walk unassisted! I’m really hoping that I won’t need another surgery in the future.🤞🏼 ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Anyways, last night my niece accidentally sat on my shin, and I let out a piercing scream because it hurt so much. She immediately felt bad (but I reminded her that it was only an accident!) and retrieved me this ice pack she taped with a paper towel! 😂 She’s so sweet and caring. ❤️ It was a bit difficult (and painful) to walk for a few hours, but thankfully it now feels fine! ⠀⠀⠀⠀⠀⠀⠀⠀⠀ #hemangioma #surgery #ostomate #ileostomy #ostomy #stoma #girlswithguts #ostomyawareness #chronicillness #invisibleillness #spoonie #eds #ehlersdanlossyndrome #zebrastrong #asthma #dysautonomia #orthostatichypotension #pots #mastcellactivationsyndrome #endometriosis #endowarrior #klippelfeilsyndrome
If you have MCAS what were some of your symptoms and how did they diagnose you? I feel like I fit the symptoms of MCAS and I have many sensitivities and allergies. I also seem to be getting new allergies every year and having allergies to things I previously tolerated (like propranolol). All I can afford right now (unemployed and in the process for disability) is appointments with my GP and I don't know how helpful he would be. He didn't really know much about POTS and told me to do my own research because he didn't know much about it. - - - ❤Tags❤ #chronicallyill #chronicallyillwarrior #chronicillnesswarrior #spoonie #spoons #spoontheory #pots #posturalorthostatictachycardiasyndrome #potsie #potssyndrome #chattanooga #chattanoogatn #mastcellactivationsyndrome #mcas - - - 🐶Pawtners🐶 @jorgha_and_pickles @chief_the_servicedog @service.dog.dasiy @service_unicorn_nakita @littleredservicedog - Wanna be a Pawtner? DM us!
After all of the questions from yesterday’s story, I figured it is time for an awareness post! The white circle on the back of my arm is the sensor for the Freestyle Libre glucose monitor. Rather than poking my finger every five minutes, I can wave the little remote over the sensor to receive a glucose level reading. Each sensor lasts 10 days. Although I do not have diabetes, my conditions cause significant pancreatic involvement. This is a much easier tool to use during flares, providing I get through the next 10 day trial period to ensure my mast cells don’t wig out and have reactions to the needle that holds the sensor to my arm. 😊
After long nights battling chronic illness I am so grateful to wake up to short devotionals right by my bed!!!! For more details, check out my stories at the top of the Instagram or Facebook page. #chronicillness #mastcelldisorder #mastcelldisease #mastcellactivationsyndrome #steppingoutoftheboat #recoverreshapereform #soarbeyondlimiations #financialfreedom #coachcoggins #stacycoggins #marykay #beachbody #alloverhealthandwellness
✨it’s this guy who keeps me going, who helps me hold my sword in battle, and who helps keep me anchored.. it’s been weird not being allowed to drive, and I honestly wasn’t doing much of it anymore to begin with. At least my hubby still likes driving me around. Who else has had their license taken from them due to a medical condition? It’s definitely been weird to process, and honestly I’m just glad to be alive. If you don’t know what happened, long story short: I totaled my car and also one that was parked because I lost consciousness at a four way stop, just as I started to take my turn. No one was hurt or impacted physically by the crash except for me. It’s been a tough recovery, for sure. Thank you everyone for your love and patience. Especially you, @chrisflesh 😘😘 • #ilovehim #myhero #chronicillness #chronicpain #raredisease #eds #heds #ehlersdanlos #ehlersdanlossyndrome #hypermobileeds #pots #hypotension #dysautonomia #mcas #mcad #mastcell #mastcellactivationdisorder #mastcellactivationsyndrome #spoonie #zebra #zebrastrong
You may think nothing of a girl finding rocks or sitting on a swing but for @carolinekeeth these are moments of freedom she hasn’t experienced in a long time. Due to her MCAS the outside world can be a truly life threatening place. If she were to be stung by a bee or wasp she would go into anaphylaxis. If someone were to be burning brush or mowing grass it could do the same. Today’s GI appointment went well. She (the doctor) thinks that a port or pic line would be good for her but wants to hear what her allergist and hematologist think. She has also recommended a cardiologist here in Little Rock who deals more with POTS. We will be finding out more in the coming days. So please keep her in your prayers. We saw this piano fountain at a craft market after the appointment. #gastroparesis #ehlersdanlossyndrome #pots #posturalorthostatictachycardiasyndrome #mastcellactivationsyndrome #fibromyalgia #chronicillness #chronicpain #spoonie #spooniefamily
It's #justacard Week! Today's prompt is 'You'. Hi! This is how I actually look, haha & then how most people see me in the bottom right. My name is Tamsyn, I'm 28 years old. I've been running VelvetVolcano for almost 9 years now & I have a rare disease called Mast Cell Activation Syndrome. I started VelvetVolcano long before I realised I had #MCAS , but I was still #chronicallyill then too... I had finished education (as much as I could manage) which left me with a half finished art course, 2 AS Levels in Psychology & English Literature (just.. ha) & 2 A Levels in World Development & Sociology.. as well as diagnosis's of hypermobility syndrome, #fibromyalgia , #depression , #anxiety , #IBS & #OCD . I was also completely directionless. I started making little wire bracelets with beads & gemstones for something to focus on.. being creative was a wonderful escape for me. I had always enjoyed writing, singing, drawing, painting... CREATING (even if it was just a mess 😉). From there I began playing around with hama beads & shrink plastic & then my love of sparkle & glitter drove me to start playing around with rhinestones.. suddenly my friends (& then their friends & so on & so on) wanted to buy the things I was making. Out of nowhere I suddenly had a little business & since then I’ve been trying to wrap my head around how to be a business-woman, haha. My situation is quite odd, I am housebound as my MCAS reactions are so severe & live in isolation a lot of the time. Basically my immune system perceives 100s of stimuli as an ‘attack’ and this can result in severe allergic reactions including anaphylaxis & scary temporary paralysis where I lose all movement, sight, speech etc and am in terrible pain. I’m allergic to almost all food & a tonne of things most people take for granted or wouldn’t bat an eyelid over so running a business, let alone just daily life an be very difficult, but I do my best, haha 😀. #chronicallybadass #mastcellactivationsyndrome #chronicillnesslife
There’s a beautiful dam nearby that Chris and I love visiting. The road that leads up to it is pedestrian-friendly (hardly any cars go up it) and is a very nice place to walk. Since the weather has been warm, we’ve been going there often, like today! ☀️ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Fun fact: My best friend is a type 1 diabetic, and I have been going along with her to many of the annual Step Out: Walk to Stop Diabetes events. For participating, I get a shirt every year, and have accumulated SO many like the one I’m wearing! 😅 ⠀⠀⠀⠀⠀⠀⠀⠀⠀ #summertime #ostomate #ileostomy #ostomy #stoma #girlswithguts #ostomyawareness #chronicillness #invisibleillness #spoonie #eds #ehlersdanlossyndrome #zebrastrong #asthma #dysautonomia #orthostatichypotension #pots #mastcellactivationsyndrome #endometriosis #endowarrior #klippelfeilsyndrome
Back from the hospital and resting. I cannot tell you how thankful I am to have this feeding tube out! My body has breathed a sigh of relief after suffering with incredible pain for 4 months and the site never healing. Now to heal the hole in my stomach! Keep fighting. Keep moving forward. #bebrave #bestrong #chronicovercomer #livelifetothefullest #keepmovingforward #chronicillness #invisibleillness #eds #ehlersdanlos #ehlersdanlossyndrome #dysautonomia #pots #myastheniagravis #chronicwarrior #spoonie #spoonielife #zebrastrong #psoriaticarthritis #youdontlooksick #gastroparesis #mastcellactivationsyndrome #mcad #mastcelldisorder #notgoingdownwithoutafight
My dinner tonight as I watch Eastenders with my lovely husband. Roasted salmon with garlic gloves served with wild rice on a hand made plate. Always simple. Creative and low histamine. #lowhistaminediet #histamineintolerance #histamine #lowhistamine #diet #wheatfree #dairyfree #freeform #glutenfree #brunch #winterdish #vegetarian #vegtables #vegan #veg #mastcellactivationsyndrome #mastcell #ibs #plantbaseddiet #beetroot #picoftheday #instafood #instagood #Tesco #sanisburys #aldi #almond #salad
Pan-fried shrimp with rice, salad is grapefruit, cucumber, and greens with homemade sesame dressing. Not a recipe for anyone with a histamine intolerance!!! Stay away from the citrus, shellfish, and vinegars if you're trying to stick to a low histamine diet. Also, I make a lot of my marinades and salad dressings and things with soy sauce, so if you're trying a gluten free diet, make sure to buy soy sauce that is labeled gluten free. . . . . . #glutenfree #glutenfreerecipes #glutenfreeliving #lowfodmap #lowfodmapdiet #fodmapfriendly #cooking #diet #eliminationdiet #pots #posturalorthostatictachycardiasyndrome #dysautonomia #eds #ehlersdanlossyndrome #mastcellactivationsyndrome #mcas #dysautonomia #dysautonomiaawareness
“You can’t tame the spirit of someone who has magic in their veins.” 🌲❤️ - - We found this amazing cave last week on our hike, and breathtaking doesn’t come close to describing it 💕- - I have gotten a few DMs asking what made me choose to be so open on this account about my struggle with mental/physical illness. I guess the truth is because not many people are. On the outside, I seem like everyone else, and I think it’s important to show that those suffering with chronic illness ARE just like everyone else. We laugh the same, we love the same, we live on this same crazy earth, we just happen to have a bit more to overcome ⛰ Along with this, I hope to be a voice of encouragement to those enduring similar struggles. I hope to show you can struggle, and still continue to thrive. That taking things day-by-day, and enjoying the moments you are given is a possible, and beautiful, way to live life. If I help someone along this journey, that would be amazing! But, if not, I know I’m at least learning a lot about myself and having a great adventure along the way! Happy Monday, friends! It’s another week of treatments for me, but hope you guys have some fun things planned ❤️ #motivationmonday ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ #servicedog #lupus #epilepsy #ehlersdanlossyndrome #mastcellactivationsyndrome #dysautonomia #POTS #autoimmunedisease #connectivetissuedisease #gsdsofinstagram #germanshepherdsofinstagram #workingdog #dragonthegsd #universityofkentucky #germanshepherddog #dogsonadventures #thegermanshepherdworld #fitdogsofinsta #GSD_feature #gsdloverss #workinglinegsd #forevergermansheps #dogphotography #instagsd #gsdlife #dogstagram #gsdlove #gsdstagram #gsdunited
I'm still not happy with the Curlin pump and tubing situation. I switched infusion pharmacies which overall has been a pretty good experience so far. But the tubing that they gave for the Curlin pump doesn't have a spot to administer bolus doses of meds, so if I need to push Benadryl or Zofran while an infusion is going, I have stop the pump and disconnect everything, push the med, and then reconnect and start the pump again. Not convenient, harder to do when you benadryl *now*, and probably higher risk of infection too. The CADD tubing had a spot to just inject the med right into the tubing and was so much more convenient. The pharmacy said they could try to find me a port needle with a Y connection so I can push meds that way while running an infusion. Not my ideal scenario, though I'll try it. But I'm befuddled as to why Curlin tubing with an injection spot for meds does not exist. #IVMeds #dysautonomia #MastCellDisease #curlinpump #caddpump #mastcellactivationsyndrome #ehlersdanlos #benadryl
Since I’ve been sick, one of the activities I’ve tried to maintain is cooking. It’s something I really enjoy and it’s relaxing for the most part. I usually will cook for three (my parents and I), but since the whole family was over, I cooked for 9 people (7 adults, 2 kids). Like I said, i love cooking and using it as a creative outlet. That being said, I’M SORE! #addisonsdisease #avascularnecrosis #adrenalinsufficiency #butyoudontlooksick #chiari #chronicpain #chronicillness #chronicillnesses #colitis #dysphagia #dysautonomia #ehlersdanlos #ehlersdanlossyndrome #fatigue #gerd #hypoxia #invisibleillness #mcas #mastcellactivationsyndrome #nervepain #occipitalneuralgia #osteogenesisimperfecta #pain #reynauds #spoonie #spoonies #tmj #vertigo #zebrastrong
Saw this meme a few months ago and it’s still cracking me up! Pill organizers help but it’s still a ridiculous struggle. Especially when you add tinctures/drops, injections, refrigerated probiotics and toxin binders to the mix! #lifewithchronicillness #brainfog #mcas #mcad #mastcellactivationsyndrome
Hi, friends. I’ve not forgotten about you or all the fantastic picture books I have lined up to share with you. And I’m eager to tell you more about the 3 awesome dinosaur books I have lined up. My recent silence has been due to a flare of chronic illness—POTS and Mast Cell Activation Syndrome. I’ve been much better in the past year but this last week has reminded me that sometimes my body needs rest to the exclusion of doing anything else. So I’m doing some intense self care so that I can get back to normal as fast as possible. Thanks for your patience & support! • • • #readlearnrepeat #spoonie #spoonlife #potssyndrome #mastcellactivationsyndrome #invisibledisability
✨sometimes I wish I had the power to physically grab the light and give it to all of you. Thank you all for being here for my ramblings. 😘✨ you ALL are such a wonderful group of support and solidarity. Love you ALL!! 💛 #cheeseyaf #chronicillness #chronicpain #raredisease #eds #heds #pots #mcas #mcad #dysautonomia #ehlersdanlos #ehlersdanlossyndrome #hypermobileeds #hypotension #mastcellactivationdisorder #mastcell #mastcellactivationsyndrome #spoonie #zebra #zebrastrong
Do you ever have days when you just can’t speak or put sentences together to save your life? 😬🤦🏻‍♀️ Today I can only seem to communicate through paint, which has been perfect for my final hours alone 😊 Mom will home soon and the vacation will be over, but I’ve enjoyed every minute. For now, literally all I can say is Happy Sunday friends 😂💕 #adventuresinfibroland
Freshly henna’d my hair and I feel brand new, now I’m on the road to Little Rock for my GI appointment tomorrow. I really have no idea how this will go, sooo prayers will be appreciated cause I’m feeling kinda anxious. My nutrition intake isn’t very good (to put it lightly) and my weight and the rest health are suffering for it. So yeah, we’ll see what comes of tomorrow, but until then I’m just looking forward to some family time and hunkering down with my aunt and uncle. ☺️ #spoonielife #gastroparesis #ehlersdanlossyndrome #mcas #mastcellactivationsyndrome #fibromyalgia #henna #hairdye
Took a trip to the lake early Saturday evening. I thought the water might feel good on my joints, but ended up too cold for me! Doggies had a great time swimming. Spent today resting and preparing for the week. It is supposed to hit 100 degrees in CT tomorrow 😲😲 heat does not bode well for my #POTS and #MCAS . Fingers crossed I am able to stay inside for much of the day! #chronicillness #chronicallyill #lifewithchronicillness #POTS #posturalorthostatictachycardiasyndrome #dysautonomia #temperatureregulationproblems #MCAS #mastcellactivationsyndrome #sjogrens #sjogrenssyndrome #GP #hypermobility
Wishing a very happy Father’s Day to my helpful (can you tell I needed assistance with this huge fishing rod?! 😂), loving, supportive, hard-working, and hilarious dad! Love you so much! ❤️ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ #fathersday #fatheranddaughter #throwback #ostomate #ileostomy #ostomy #stoma #girlswithguts #ostomyawareness #chronicillness #invisibleillness #spoonie #eds #ehlersdanlossyndrome #zebrastrong #asthma #dysautonomia #orthostatichypotension #pots #mastcellactivationsyndrome #endometriosis #endowarrior #klippelfeilsyndrome
Despite the look of immense thrill on my face, day 5 and I’m getting discharged from here to go back to Brigham’s And Women’s Hospital finally!!! It’s been one heck of a week and my body is still so unstable, but I pulled through. This girl is ready for Boston, ready to take on another treatment, and ready to fight back and kick this disease in the butt. And yes, it’s ok to have bad days, to cry, and to be frustrated. This week...ok this month, has definitely been a continuous “bad day.” I can’t even count how many times I’ve sobbed in defeat. It’s taken lots of prayer to see that there’s joy in this season. There’s joy in not knowing how this will end, because it’s the opportunity to press deeper into Jesus. Boston, I’m ready for round 2 of ya. 💪🏻 #PrednisonefaceDontCare #spoonie #chronicillness #mastcellactivationsyndrome
Well it’s been quite a week! I was finally diagnosed with Mast Cell Activation Syndrome, I attended my first ever @tasteoflondon event which was fabulous and got to meet some fantastic dairy and gluten free brands including @hippeas_snacks @califiafarms @pipandnut and @miiro_ice_cream as well as the brilliant home delivery flower service @freddiesflowers . Speaking of Freddie, my house bunny also survived his GI Stasis scare! As a result, he is the star of today’s #mysundayphoto I’ve also written a blog post on the 6 things that brought a smile to my face this week covering all of the above. #whataweek #linkinbio
My go-to dinner option when I don't have the energy to cook. Rice or corn cereal with milk substitute and fruit. To make this low-histamine, make sure not to use any nut milks like the almond milk I used here!! Try rice, coconut, or soy milks instead, depending on any allergies you may have. To make is low-FODMAP friendly, avoid coconut and soy milks. As far as fruit goes, don't forget strawberries are high in histamines! Try apples, grapes, blueberries, or blackberries instead and be sure to avoid citrus. For a low FODMAP diet, go with berries, banana, kiwi, or citrus but avoid things like apples, pears, mango, peaches, and plums. . . . #glutenfree #glutenfreerecipes #glutenfreeliving #lowfodmap #lowfodmapdiet #fodmapfriendly #cooking #diet #eliminationdiet #pots #posturalorthostatictachycardiasyndrome #dysautonomia #eds #ehlersdanlossyndrome #mastcellactivationsyndrome #mcas #dysautonomia #dysautonomiaawareness #lowhistamine #lowhistaminediet
FATIGUE// every cell in my body is screaming. my very existence is held down by the weight of a thousand bricks resting firmly on my chest. nothing in this universe wants me to move. it's the utter desperation felt when stuck in the throes of quicksand--fight it and it's worse, honey. my fingers ache with every slight movement. my torso is glued to the bed. my legs are heavy pipes filled with cement. my head? it's a bowling ball sunk deep into the cushion of my pillow. i can't bear to move. it's too hard to imagine. yet i turn my heavy legs into bendable PVC, still filled with a sort of heavy stone. i muster up all the strength i have in my bones and in my brain to swing those PVC pipes closer to the edge of my bed. my lifeless feet are placed on the ground as the rest of my body somehow follows in its place. i look at my feet. are you ready to hold the rest of my body? they don't have enough energy to even respond. my cells are screaming and crying. this utter bone-wrenching and mind-crushing fatigue is too much for them to comprehend. yet i stand as the world fills with black spots starting from the edges and filling in the rest of the scene. gravity takes over and the blood in my body sinks to my poor, helpless feet. my vision stutters and then restarts. yet i will those bricks of feet to move. dizzy and light-headed, my aching body begins to walk, slowly and carefully like a toddler who just learned the joy of independent movement, except i'm no toddler and this is far from joyful. i am exhausted. and yet this is only the beginning of my day. . . . . [image description: a hand resting on top of the white duvet of a bed] . #poetrytoeasethepain #poetry #poetryofinstagram #poetryofig #feelthis #poetryinplaceofexperience #poetryfromexperience #artoutofillness #poems #poet #art #writeitout #mornings #morning #chronicfatiguesyndrome #cfs #myalgicencephalomyelitis #me #mecfs #cfsme #mastcellactivationsyndrome #mcas #posturalorthostatictachycardiasyndrome #pots #chronicillness #chronicillnesspoetry #chronicillnessawareness
Its both scary and comforting to think that the words on this little bracelet can be the difference between EMTs saving my life or accidentally injuring me. . I’ve been progressively getting more sick for about 5 years now, and despite getting worse and worse, no doctor ever told me to get a Medical ID. I suspect because I never had conditions that were severe and episodic, requiring emergency help frequently. . Now that I’ve developed *anaphylaxis my allergist recommended I get one. I thought this maybe was a bit extreme at first, until I had this last episode and realized how suddenly my allergens could affect me. Another reason to always trust my doctor! . The reality of needing a medical ID is a bit nerve-wrecking, but having one does provide some solace. Hopefully it will help with my food-related anxiety that I’ve also started having thanks to this lovely new symptom. . Also, thankful that not all medical IDs are huge and bulky these days. 🙌🏼 . . . . . . . . . *𝔸𝕟𝕒𝕡𝕙𝕪𝕝𝕒𝕩𝕚𝕤 𝕚𝕥𝕤𝕖𝕝𝕗 𝕚𝕤𝕟’𝕥 𝕒 𝕔𝕠𝕟𝕕𝕚𝕥𝕚𝕠𝕟, 𝕓𝕦𝕥 𝕀’𝕧𝕖 𝕕𝕖𝕧𝕖𝕝𝕠𝕡𝕖𝕕 𝕚𝕥 𝕤𝕖𝕔𝕠𝕟𝕕𝕒𝕣𝕪 𝕥𝕠 𝕄𝕒𝕤𝕥 ℂ𝕖𝕝𝕝 𝔻𝕚𝕤𝕖𝕒𝕤𝕖, 𝕨𝕙𝕚𝕔𝕙 𝕚𝕤 𝕒𝕟 𝕚𝕞𝕞𝕦𝕟𝕖 𝕡𝕣𝕠𝕓𝕝𝕖𝕞.
As I get older I realise how sensitive my eyes have become to colour and light. Fortunately for me i can channel this energy into my cooking for everyone to see. All low histamine goodness. Happy Sunday and always low histamine where ever you are. #lowhistaminediet #histamineintolerance #histamine #lowhistamine #diet #wheatfree #dairyfree #freeform #glutenfree #brunch #winterdish #vegetarian #vegtables #vegan #veg #mastcellactivationsyndrome #mastcell #ibs #plantbaseddiet #beetroot #picoftheday #instafood #instagood #Tesco #sanisburys #aldi #almond #lowcarb
LET'S GET DANGEROUS Who's that cunning mind behind the shadowy disguise? Don't usually post pics from the ER but last time I was there they gave me this hat. Okay it's a puke bowl that I didn't have to use. Paired with the RZ mask & my binky combined, I become Darkwing Duck. Every time I go to the ER, my goal is to get the staff to laugh. They have hard days & nights, remember that you don't know what they have just been through. Maybe my throat is closing or I'm dipping in and out of consciousness. Maybe I'm in a lot of different kinds of pain or experiencing atypical anaphylaxis. Humor is a coping mechanism for me, as well, and while it may seem inappropriate to some, cracking wise when I'm in distress keeps me focused on something besides dying. Staying calm helps me stabilize faster. #darkwingduck #impromptu #cosplay #spoonie #mastcellactivationdisorder #mastcellactivationsyndrome #don 'tpanic #bringablanket #betheheroofyourownstory
BLOOD OZONE THERAPY UPDATE: Here’s what I’ve noticed I’ve the last two and half months of treatment: 1. The blood ozone has helped me flush out candida & parasites MUCH faster. I’ve been trying to get rid of my Candida overgrowth for almost a year without much Iuck. Then as soon as I had my first treatment, literally just a one pass I started flushing Candida out of my body. 😬 Slightly disturbing but also reassuring that I’m finally clearing things out. 2. My immune system is much more in check when I keep my treatments on a weekly or bi weekly schedule. 3. My interstitial cystitis flares have gotten WAY better. Much fewer and further between. I won’t lie this is by far the most exciting thing that’s happened to me through out this healing experience! My theory is that as the candida overgrowth has gotten better so have my IC symptoms, but obviously this is only a theory. Either way I’ll take it!! 4. New symptoms have started to appear... this part has been difficult for me. I have days where I feel like I’m wearing concrete blocks on my feet and my legs are too heavy to move. I’ve started having intense night sweats and chills, and I’ve watched my oxygen levels bounce around like crazy. The air hunger has been particularly disturbing, but I’ve been reassured by my doctor that things with Lyme confections and babesia can get worse before they get better. So I’m trying to look at is a positive sign that these things are being forced out of hiding where i can finally getting rid of them. Here’s to healing! #interstitialcystitis #mastcellactivationsyndrome #spoonie #bloodozonetherapy #ozonetherapy #lymedisease #lymecoinfections #babesia #airhunger #lowoxygen #nightsweats #heavyfeet #healingebv #ebv #mycoplasma #coxsackie #candidata #candidacleanse #parasites #parasitecleanse #illuminatingillness #dysautonomia #chronicillness #fatigue #stillsmiling #nevergiveup #bloodparasite #iamhealing #onedayatatime
The best friends have four legs 🐶💛 Loving this lazy weekend. (Can you tell how swollen my eyes are? 😣 thanks MCAS) #adventuresinfibroland
Maybe it’s because I’ve spent all morning with the Fab 5, but I’m SO feeling this today!🍦I’ve been chronically ill since birth, and it’s always felt like I go through live, vivid periods and muted, stifling periods. Sometimes I’ll be able to sing and dance and travel; I’ll work all day long, take care of myself and everyone around me. I’m exhausted by the hustle, but it’s life-giving. And then other times it feels like I live entirely in my mind, and the only movements or comments that make it out are minimal or instinctive. I’ll bop my head around or shimmy, but there’s zero singing (out loud); I’m intimidated by a few hours of social activity; I can’t manage to do a load of laundry in less than two days. And it’s frustrating mostly because I feel like the same person regardless of my health. I still want to do the same things and be the same ‘muchier’ version of myself, I just can’t be. The illness is too demanding. Healthy or not, the soul stays the same. Today I’m reminding myself that this is just one of those muted periods, and there are many ‘muchier’ days to come ☀️ Sending love and extras your way! 🥄💕
Lydia wrote this in my birthday card yesterday 😭 I’m going to miss my nieces so much! Also, thank you all so much for the kind birthday wishes yesterday! It truly means a lot. ❤️ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ #twentyfourmoredays #europe #goodbyeamerica #ostomate #ileostomy #ostomy #stoma #girlswithguts #ostomyawareness #chronicillness #invisibleillness #spoonie #eds #ehlersdanlossyndrome #zebrastrong #asthma #dysautonomia #orthostatichypotension #pots #mastcellactivationsyndrome #endometriosis #endowarrior #klippelfeilsyndrome
The word of the day is: Contraindicate /verb/ to make (a treatment or procedure) inadvisable. 🙅🏽‍♀️ . You hear this word a lot when you have multiple conditions, because a lot of the times things that help one of your condition could make another one worse. Sometimes a treatment will be contraindicated, but you need it anyways. . That’s when the lines of what the best course of action is get blurred, and it’s up to you, the patient, to decide what problem you want to fix...and what problem you’re okay with getting worse (After talking extensively with your doctor, of course.) . Some examples of contraindication might be: -using a wheelchair will make EDS worse, but if you have neurological conditions that make you unable to walk it’s a necessary treatment -having a central line when you have a compromised immune system isn’t recommended, but cancer patients have lines anyways cause they need them. -taking pain killers to increase your quality of life, but they delay gastric emptying therefore worsening Gastroparesis . Contraindication can make it tough for doctors to make the right call, and for patients to find a treatment plan that works for them. 📖
The most heart breaking thing about not being able to teach anymore is that I can't be there for the kids Day in and Day out. In Dallas our entire Bilingual School was low income with free meals and food sent home on weekends. But the biggest struggle for families was childcare. Everytime Science Club met after school with the older kids, younger siblings were left alone to walk home or stuck at school doing nothing until the Big kids finished at 5pm. I stepped up and began a kinder through 2nd grade Art Club on Science Club Days to give the younger siblings a safe place to stay with fun activities and also took stress away from parent's trying to find sitters or leave work early to pick up only half their family then get the other half after 5. Then a second Science Club for younger students was made and as a result I created a Big Kid Art Club. I held art clubs after school twice a week and never asked for additional pay for hours I worked off the clock. In addition to providing an art outlet to students, I also created motivational posters with catchy rhymes or inspiring words to encourage students to be excited about all the other subjects in school and be accepting of others different from you. One of my favorite posters says "Learning Cultures Opens Eyes" and I drew the pupil of the eye as the Earth. I truely miss all my students and their parents with all my Heart. #showmerealchallenge2018 #PhysicalTherapy #Therapy #Patient #MastCell #MastCellActivationSyndrome #MCAS #MastCellActivationDisorder #EhlersDanlos #EhlersDanlosSyndrome #EDS #hypermobility #SpoonTheory #Spoonie #Spoons #spoonielife #ProfessionalPatient   #InvisibleIllness   #Migraine #ClusterHeadache #ChronicPain #ChronicFatigue #Chronicillness #ZebrasUnite #ZebraStrong #ZebraStripes #zebra #spineissues #Spine #POTS
Fighting fighting fighting. Fighting to breathe. Fighting pain. Fighting to cope. Fighting to hold onto hope in moments when my body is doing everything it can to make me lose sight of it. It’s day 4 of being here. Last night my throat began swelling closed, and let me tell you it’s a feeling I wouldn’t wish upon anyone. My temperature was out of control too and I was burning up from head to toe. I got put in a trauma room, while they packed me with ice, ran cold IV fluids & meds, and had me on breathing nebs to bring up my oxygen. My body is going downhill fast. One of the scariest things is that the usual meds that take down these reactions, like everything else, are beginning to no longer work. They found some other upsetting news, but I don’t want to talk about it quite yet. The doctor I’ve had here said I need to get back to Boston ASAP, because this cannot continue. So, we’ve changed these vacation plans, and instead of flying home we are going back to Brigham And Women’s Hospital in two days. My specialist is seeing me super fast, and I am grateful. For now, I’m still fighting. And it doesn’t always look like a smile and head held high. More times than not, it’s a head bowed low. It’s tearful eyes looking up for hope in a God who I know will never ever leave, no matter how tough the fight gets. #anaphylaxis #mastcellactivationsyndrome #spoonie #chronicillness
Happy #stackdogsaturday ❤️ This amazing photo was taken by @watsonsupersleuth ! We got the opportunity to meet up with them yesterday, and head to #redrivergorge after a particularly long week for us both. It was an awesome adventure, and we found so many great spots for photos, we didn’t have enough time to take all the ones we wanted!! What an adventure! What are your guys’ weekend plans? ⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ 🐾Follow our pawtners:🐾 @adventures_of_magnolia @mifoley @the_explorabulls @thegolden_and_thepyr @savageservicedog @riahfaye @gunnerthesd @desert_k9s @fattymcrunnerpants #servicedog #lupus #epilepsy #ehlersdanlossyndrome #mastcellactivationsyndrome #dysautonomia #POTS #autoimmunedisease #gsdsofinstagram #germanshepherdsofinstagram #workingdog #dragonthegsd #universityofkentucky #germanshepherddog #dogsonadventures #thegermanshepherdworld #fitdogsofinsta #GSD_feature #gsdloverss #workinglinegsd #forevergermansheps #dogphotography #instagsd #gsdlife #dogstagram #gsdlove #gsdstagram #gsdunited
Just over here doing some work from my home office. Thankful for the flexibility to do this. I LOVE my career and enjoy what I do. I far too young to have to bow out due to my #chronicillnesses . So I will continue to do the best I can, hit my billables (even while being sick), and enjoy my work. I am thankful that on more days than not, I am able to kill it at my job. And on days when my illness keeps me down, I rest and come back swinging. #careerwithchronicillness #chronicallyill #chronicillness #chronicinflammation #sjogrens #sjogrenssyndrome #autoimmunedisease #POTS #dysautonomia #posturalorthostatictachycardiasyndrome #GP #MCAS #mastcellactivationsyndrome #severeallergicreaction #anaphylacticshock #spoons #spoonie
We started realizing over the past year how hard all of the hospitalizations and out of state doctors visits were on our other two boys and our youngest going through it all away from *his boys* as he calls them was extremely hard too. They kept asking us to not go away anymore. It was heartbreaking 😢. So we made the decision to start taking them with us and making an adventure out of each doctors visit and food clinic days. Obviously, they can’t go to hospitalizations but thankfully there has been a lot less of those as he is healing! 🙌🏼 These new adventures give us a shining light as we navigate through this medically complex life. I love that we get to spend these moments together even if I wish it wasn’t under these circumstances. #onedaybuddy #youwillbehealed #summertime #fpies #fpiesawareness #fpiessucks #careaboutrare #mastcellactivationsyndrome #mcas #foodallergies #foodallergymom #potssyndrome #warriormom #specialneedsmom #mummysontime #homeschool #homeschooling #boymom #lupuswarrior #onedayatatime #wevegotthis
Friday morning breakfast before going to hospital with my son due to testicular rotation. There was a study in rats that testicular rotation could be reversed by vaso intestinal peptide. Of course the mastcells released intermediates in the rat testicular mast cells. The intermediate measured in the article was heparin. Heparin is also used to make blood thinner in the body. It is involved in nose bleeds as well. Today we met a doctor specialised in urology. So my answered were not answered. If she thought the same could be the reason for my son. As always during these years investigation of my son someone else is always responsible. I am fed up on that someone else who doesn't exist. In these case we have a health system that should help on individual basis. However, after four years we are still outside the system. No quality school due to sickness. No diagnose due to a health care working with symptoms and not causes. In my sons case there must be a certain order things must be happening, however his body works different from that order. I suspect mastcell activation. The doctors see testicular rotation even if he has had a surgery, nose bleeds, stomach aches, sleeping disturbances, loss of appetite etc but never put these things together just because his tryptase isn't elevated. Tryptase is one of twohundred intermediates from mast cells. Todays visit ended with it looks ok! We can't do anything! #fruitbreakfast #hospitalvisit #eatclean #eathealthy #lowcarb #lowcarbdiet #healthyfood #healthychoices #healthylifestyle #healthy #health #brainhealth #brainfuel #brainfood #brainpower #brainsmart #paleo #primal #cleanfood #cleaneats #clearmind #cleaneating #clean #mcas #mastcellactivationsyndrome #testicularrotation #testiculartorsion
I love going on adventures, and I can't stand being forced to lay down or stay in bed...so when my POTS is flaring, (and I have to leave the house because I'm going stir crazy 😜) I like to take this super lightweight @rei trail stool with me. It definitely helps me get things accomplished (like waiting in line at the Post Office or at Target (Today it was the DMV🤦‍♀️)). It's durable, light enough to carry it on my pinky (and I have EDS) and it's from REI, so I ❤️ it. If y'all are looking for a super lightweight, easy to pack & carry option for helping you when your heart rate gets too high, I definitely recommend! . ALSO, I have heat intolerance (and break out in hives from the sun,) so I found this super awesome @columbia1938 pfg shirt that's spf 50 and helps me stay nice and cool in the summer heat. I like to get it damp before I go outside so that it stays cool for a little while. It definitely helps if you like to hang out outside & also comes in a bunch of colors! I got it off amazon for like $23!
when you make homemade pizza look like you bought it// can you guess which one's mine?? . thx @maureen6332 for all the yummy foods lately! you are the best! . . . . [image description: 1. an aerial view of three pizzas in cardboard boxes 2. me, smiling and holding a piece of pizza 3. me, holding a piece of pizza to my mouth, ready to eat it] . #foodsensitivities #cauliflowerpizzacrust #goatcheese #foodintolerances #homemade #homemadepizza #food #pizza #foodstagram #mastcellactivationsyndrome #mcas #chronicillness #chronicillnessawareness
Paralympics 2018? • I hadn’t been swimming in years, but tonight I went down to our pool and shocked myself! Did almost 20 laps while my mom happy cried. 😂 #hydrotherapy
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