#mastcell

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Do you ever just get overwhelmed by the fact you're still here at all...? Like...through all the pain, the trauma, the chronic illness...all the hospitalisations, emergencies, near deaths...all the accidents, the close calls, and even the times you yourself didn't want to be here. Somehow, the air going in and out of you lungs hasn't stopped doing so since you were in kindergarten or a newborn in your crib. There's been a steady stream of life that's carried you from that tiny body to this one. . Somehow this body, right here, is an accumulation of ALL that pain and heartbreak and fear. All the illness and suffering and the belief that you might not make it very long. To walk back through your life and be AMAZED that you're still here. You're still breathing in and out. Your heart is still beating. Your blood is still travelling through your veins. You're alive when probability says you shouldn't be. And damn, it's overwhelming. It's moving. Little you would be AMAZED. . 🌬💙💛☀️ . . . . . . #disability #chronicillness #chronicpain #ehlersdanlos #ehlersdanlossyndrome #hypermobile #hypermobility #dysautonomia #mastcell #erythromelalgia #manonfiresyndrome #EDS #hEDS #POTS #MCAS #wheelchair #wheelchairuser #trauma #raredisease #rareillness #geneticillness #spoonie #spoonielife #motivation #hope #inspiration #inspirational #yourestillhere #alive #zebrastrong
While I’m in my period of writer’s block, I thought I’d do a few posts to answer some questions that a lot of you have asked. And by far the most frequent is how Finley alerts/learned to alert to allergic reactions. The short answer is that I’m pretty dang lucky that he has a lot of natural instinct when it comes to alerting—not something I at all expected, but that became pretty apparent early on. He started alerting to reactions on his own at about five months old, but he would do so after they’d already gone pretty far...so more of a response. I started scent training him around that time to try and shape those natural instincts. ... But, scent training takes time...and samples. And quite honestly, my first priority during anaphylaxis usually isn’t collecting a sample of my spit (I know, shocking 😂). So, we still do a little scent training here and there, but more as a buffer to his natural alerts and other response-type tasks, like scratching response and alerting to changes in the sound of my breathing when I’m sleeping. ... This video shows Finley’s alert to me scratching. When he notices I’m itchy and scratching, he paws me wherever I’m scratching and nudges my hand away. I’ve become so used to hives and skin reactions that I often don’t notice them—which is pretty important because, for me, they’re usually the first sign of a severe reaction. So I use this as a fail-safe...in times when Finley isn’t picking up on scent beforehand and I’m not feeling a reaction, this alert can usually still happen early enough to be useful. ... So, there you have it. More to come 😊. . . #fancypantsfinley #servicedog #standardpoodle #standardpoodleservicedog #medicalalertdog #anaphylaxis
I need help, I’m trying to take Quercetin in powder, Im trying to mix with mango juice, and if you think that matcha is hard to mix, Quercetin is imposible, any suggestions? I have a few cracker with Nutella to help me a little bit #mastcellactivationdisorder #mastcellactivationsyndrome #mastcell #mastcelldisease #histamineintolerance
I’ve been thinking a lot about @claire.wineland who very sadly gained her wings recently. She was a passionate advocate who lived life to the absolute full despite living with Cystic Fibrosis. Her positive energy and determination to rise above her disease made her seem invisible. There are so many incredible advocates out there, battling though so much that is so often not seen. Thank you for all you did to change perspectives on disability worldwide, I hope you are flying high taking deep uninhibited gulps of beautiful air 💫
Does anyone else take this? I am starting it today. #quercetin #spoonie #mastcell #mastie #mastcellactivationsyndrome
Ahhh it's a @rawjuicery kind of a day 😀🍏🥒🍋just a quick 1 day reset and digestion break. If you're not familiar with the best Juicery around - try #therawjuicery I promise you won't be disappointed. Of course I have a referral code if you'd like. Delicious! #eateanfeelgood #activehealing #chroniclyme #msids #autoimmune #foodismedicine #antidiet #mastcell #grainfree #glutenfree #dairyfree #soyfree #cornfree #carbs #paleo #vegan #juice #organiccoldpressedjuices
My poor girl...the stitches itch like mad, so I put bandaids on them, but then they cause her skin to hurt, and cause a rash....and the earliest I can get them out is Monday. I called the doc and begged them to remove them early, but he was worried that they needed more time. Being itchy can send her into a tailspin, so this just sucks. She’s also started developing issues to her rescue inhaler, making her have the shakes. Last night she has some cold yogurt, and it triggered her, causing her to wheeze, so we used her inhaler, which triggered the shakes, and then about two hours later she had a night terror attack. I’ve found that getting her up and into bright lights helps, so at least we have a way to deal with it for now. I’m sitting here praying that we get some answers with the skin biopsy results. This is such a confusing and frustrating set of symptoms to treat. #skinbiopsy #stitches #mastcell #histaminereaction #dermatographia #ouch #hopefulforadiagnosis #frustrated #asthma
FLYING WITH A CHRONIC ILLNESS did you know that you can check an extra medical bag for free on all airlines?! Just be wary that like all checked baggage, it may be lost or delayed. ••• WHATS IN MY MED BAG? -a supply of needles that will last the five days i’ll be gone, plus a few more in case of emergency -my injectable meds -alcohol prep pads -migraine meds, tylenol, benadryl, otc meclizine, zofran, and cough drops -recently refilled daily meds -a portable locking sharps container -an off the shelf first aid kit -germ-x -an EMPTY pill organizer (must be empty! ••• TAKING SHARPS ON A PLANE -whether you are taking insulin, NSAIDs, migraine meds, DMARDs or any other injected medication, the process is the same. -as you walk through the line, tell the agents that this is a medical bag that contains prescribed needles. -you bag will most likely be emptied and searched. -medications may be swabbed and tested. -be sure that every medication is in its original bottle with the prescription. -there are airplane approved sharps containers available on amazon. that’s what i am using. again, your used sharps may be swabbed and tested. airlines are fairly used to diabetic patients bringing sharps, so the procedure should be fairly easy. ••• EMPTY PILL ORGANIZERS -filled pill organizers are not allowed on the plane. -however, you can take an empty one and fill it at your hotel once you arrive! ••• LIQUID EXCLUSION -as you are probably aware, you are allowed to take liquid medications of any size, regardless of the guideline. ••• what travel tips have you picked up since flying with a chronic illness?
Vegan nachos at Cafe Gratitude 🌮 • Cafe Gratitude is an amazing vegan restaurant in Beverly Hills that became a favourite when I was here for treatment in May. These nachos had tortilla chips, avocado, black beans, cashew cheese, pico de gallo & pepitas. LA is the absolute best for food allergies & special diets, tastes so much like the real thing 🥑🍅🌶
Day 19: BOUNDARIES. Where do you draw the line? Using “No” as a complete sentence is a great place to start. Politeness of course matters but no explanation is required. No thank you. No, I’m not interested. No, I’m not available. No. 😊 Keep some time for yourself. Rest. Heal. Socialize or not. Enjoy! 👏 Tag us in your post! #teamdaf #selfcareseptember @dysautonomiasc to find you easier * * * #dysautonomia #dysautonomiaawareness #ehlersdanlossyndrome #mito #chronicillness #teamdaf #invisableillness #mastcell #mastcelldisease #gastroparesis #sickofbeingsick #sick #ehlersdanlos #potsie #potsies #potsy #pots #eds #tachycardia #lowbloodpressure #mitochondrialdisease #autonomicdysfunction #salty #highbloodpressure
My breakfast this morning. Apple and mango compot mixed with oats. Topped with roasted pumpkin seeds. I tend to eat this with a side of rice cakes and dates. Breakfast is my favourite meal of the day. I love my life. Always 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 #lowcarb
Winter is truely around the corner. Iv just ordered my Greek Mountain tea from Greece in bulk. A great low histamine tea used in Greece to cure viral infections. Colds and flu. Also tastes great with ginger. Always 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 #greek #greektea #mountaintea
Day Two of ACT Treatment at Infusio 💉 • Today was a day of IVs in preparation for the ACT treatment tomorrow. My veins were not looking too promising this morning, but of course Hollis was amazing as usual & got a good one on the first try. I received 5 IV bags in total, 2 for cell prep (DCA), glutathione, myers & a 2nd myers with added trace minerals. I was also given an injection in my arm which should work to make the cell membrane more accessible for the procedure tomorrow. The injection itself wasn’t bad but my arm did ache after & it’s still very painful & swollen this evening. I had some chest pain & shortness of breath during the IVs, but I felt pretty good after, just a little tired • I spent this afternoon resting & reading by the pool, & although I couldn’t actually swim because of my arm, I got in the water for the first time in 18 months which felt so relaxing. We finished the day with a lovely vegan dinner at Cafe Gratitude with my stem cell sister Ashley & her husband Justin • I’m actually feeling very nervous about the ACT treatment tomorrow, but I’m also optimistic at the potential to boost my immune system, which my scan yesterday shows is still struggling. Time for sleep now to give myself be best chance of a positive day tomorrow 🙂💚
Distracting myself from insaneee pain by showing another shining example of how chronic illness bodies 👏 MAKE 👏 NO 👏 SENSE 👏 . Currently, I cannot sit w/o my pelvic bone sliding out and pinching off the feeling to my feet; turning my head makes me almost faint, standing does for real. I'm having arrhythmias, chronic allergic reactions, ribs that pop out with force now. My digestion is a disaster (vomiting, nausea and extreme intestinal cramping), my feet are on fire, my weight and blood sugar are unstable. Yet..... my fingernails?? After a lifetime of being brittle, fragile, scaly, ripply, and just all-around gross..(see 4th photo)? They decided they can just cast out bayonets for fun now. I don't take care of them, file them, paint them. No supplements or encouragements to grow. I'm even a #wheelchairuser , which is a death sentence to fingernails (photo 2). . In short, my body makes no sense. None. I love that my nails are long and strong. My toenails even grow in wild and unruly directions (since they themselves are disfigured; photo 3) as if they were tree roots trying to break through a sidewalk. They're determined lil suckers and I gotta admire that. I just wish this body made more sense! . 🤔💅♿ . . . . . . #disability #disabled #chronicillness #chronicpain #ehlersdanlos #ehlersdanlossyndrome #hypermobile #hypermobility #dysautonomia #mastcell #mastcellactivation #erythromelalgia #manonfiresyndrome #EDS #hEDS #POTS #MCAS #EM #spoonie #spoonielife #wheelchair #nails #fingernails #toenails #health #wheelchair #chronicillnesswarrior #zebrastrong
•I feel like I am disappearing before my own eyes. I’m very anxious to get my gastric emptying study done and whatever else they have to do to figure out why I can’t eat food. The waiting game is the worst... especially while being incredibly unwell, not eating, and feeling so sick every day. Is anyone else going through this? ✨💛 . . . . . . . . . . . . . #chronicillness #chronicpain #raredisease #disabledandcute #cripplepunk #eds #heds #hypermobileeds #ehlersdanlos #ehlersdanlossyndrome #pots #IBD #IBS #dysautonomia #hypotension #syncope #fainting #mcas #mcad #mastcell #mastcellactivationdisorder #mastcellactivationsyndrome #spoonie #spooniewarrior #zebra #zebrastrong #bendyaf #darkcomedy
Sometimes you just have to give up on the day and go soak in the tub. 🛀 I don't do it nearly enough, and let me tell you this was so wonderful on my aching body that I will certainly be doing it more often! How do you self care? (and if you don't, may I recommend a bubble bath? 😉).
Since my #modelmeals lunch (see story or highlights) made me crave more curry I just whipped up my fav - #greenthaicurry w/ cauliflower, chickpeas, red onion, mixed greens, mushroom & cilantro. #basmati is cooking in the #instapot for the fella & we will have this for dinner (I really prefer to let flavors soak in) 🍲#vegan #paleo #eateanfeelgood #activehealing #chroniclyme #msids #autoimmune #foodismedicine #antidiet #mastcell #grainfree #glutenfree #dairyfree #soyfree #cornfree #fats
So today was a day that I realized that Dolly is my hero ❤️ she’s been acting weird all morning and had super bad zombies this morning but she knew something was wrong all morning only to land my ass in the ER with what seems like spontaneous anaphylaxis. She was a rockstar with heeling in the wheelchair (never done before) and going to get help (also never done before), and was an angel at the ER. #servicedogintraining #servicedog #servicedogsofinstagram #spoonie #mastcell #mastie #anaphylaxis
5 months old and he's already a college student. We're doing pretty well so far. A good looking man my age sat next to me and I talked in coherent sentences. That's new for me! #college #standardpoodle #servicedogintraining #respectthevest #raredisease #ehlersdanlossyndrome #mastcell #gastroparesis #zebrastrong
Sweet bed head, amiright? • All I have to do today is rest, all I have to do today is rest, all I have to do today is rest. Why is it so hard to accept this and just let myself rest? My body is telling me that’s what it needs, but that darn go-getter part of my brain keeps trying to make me feel guilty for not being more “productive.” • My thought process: “This isn’t the worst flare you’ve ever had; get up and do something!” And “People walk around in pain all the time; why do you get to lay about?” And “Maybe you’re just lazy!” • But here’s the thing: I KNOW I’m not lazy because whenever I start feeling better I start doing all the things. And even though I’ve been in way worse pain, that doesn’t mean that I shouldn’t care for my body right now. And those angry joints and spasming muscles and deep fatigue? They’re trying to tell me something: REST. • This is the soundtrack of my thoughts each time I prioritize rest. I’m constantly having to combat the “should’s” I (and society) place on myself. They probably won’t ever go away completely, but each time I get a teensy bit better at shutting down those voices in my head. • Back to bed! • • • [image description: Eliza smiles at the camera. Her head is on a pillow and her hair is tousled. A blue eye mask is pushed up onto her forehead.] • #ehlersdanlossyndrome #ehlersdanlos #chronicillness #chronicpain #dysautonomia #raredisease #mastcellactivationsyndrome #mastcellactivationdisorder #mastcell #mcas #mcad #posturalorthostatictachycardiasyndrome #pots #potsie #selfcare #chronicbabe #butyoudontlooksick
I had problems again tonight, I wanted to ask who knows that. I wake up in the middle of the night, trembling with cold, cold sweat and convulsions spasmodic. I am conscious, but I can't speak. This condition is very exhausting and only heat makes me feel better. If it goes by, then I'm totally exhausted and everything hurts from shaking, tensing the muscles and the spasmodic cramping. Does anybody know this? If so, what do you do against it? Is that related to EDS? I was extremely dizzy with cold hands and feet before going to sleep. I was in bed and suddenly it was like I was in a carousel. What do you all mean? Can you help me? . . @ehlers.danlos @ehlersdanlosuk . . . #chronicillness #chronicfatigue #chronicpain #invisibleillness #invisibledisability #spoonie #spoonielife #spooniefamily #spooniestrong #POTS #TMJ #HSD #eds #heds #MCAS #mastcell #HIT #dysautonomia #hypermobility #ehlersdanlos   #zebrastrong #chroniczebra #ehlersdanlossyndrome #dontjudgeaperson #dontjudge #alwaysfighting #mylife #histamin #butyoudontlooksick #fightlikeawarrior
“An apple a day keeps the doctor away” was an aphorism coined in 1913 based on the original form with a different rhyme, 149 plus years ago in Wales: "Eat an apple on going to bed and you'll keep the doctor from earning his bread". Think about that saying. Think about how long ago this was and the people were saying that!!! Apples have immune boosting and disease preventing properties and are a highly alkaline fruit that have the ability to quench thirst immediately and at cellular-level. Apples are also super detoxifying because they contain both malic and tartaric acids will help remove impurities from the liver and gallbladder. So what happens when you eat THREE apples (skin included)? You’re helping your body prevent colon, liver, breast, prostate, and lung cancer as well dramatically decreasing the risk of a stroke. If you’re suffering from an autoimmune disease, apples will significantly reduce inflammation. Apples, which are high in Quercetin helps people like myself with high histamine issues like mast cell or if you’re mysteriously histamine intolerant, get your apple’n on!!! My life has been taken over by idiopathic hives from histamine issues so Quercetin is a big part of a medicine free lifestyle for myself. The National Health and Nutrition Examination conducted a survey and concluded that apple eaters "were somewhat more likely to avoid prescription medication use than non-apple eaters." My findings: An apple a day keeps the pharmacist away & you need to pre-ordering your copy Liver Rescue. Now to sip my fresh pressed organic Gala apple juice. Be Well + Eat/Drink your 🍎🍎🍎 . . #medicalmedium #applechallenge #liverrescue #apples #juice #healing #histamineintolerance #hives #mastcellactivationdisorder #mastcell #holistic #healthiswealth #gallbladder #liversupport #quercetin #guthealing #wholebodyhealth #certifiedcoach #hydration #internalhealth #beginwithin #sibo #guthealth #leakygut #migraines #headaches #toxic #fruitislife #plantbased #cleveland
https://www.gofundme.com/help-me-with-c1c2-surgical-deposit I know it’s still barely the time or the place for this in the midst of Hurricanes Florence’s destruction and I apologize, but I still sadly need a ton of help. I didn’t think I could mentally or physically go through with this surgery after the unexpected trauma and horrors I suffered at Caromont and in their ICU 2 weeks ago. I am absolutely terrified to wake up intubated again and be confused and abused for days. I know this will be different, but still. It’s exactly a month away and still going to be a 10k out of pocket endeavor but I’m at the end up my rope. If we don’t get my brainstem compression under control and stabilize my neck to avoid vertebral artery kinking, I will just stay high risk. This has to happen and I appreciate any and all help and even the ton of love of support I’ve received lately. I could never fight this battle alone!❤️💪🏼🦓 #spinalfusion #eds #ehlersdanlos #ehlersdanlossyndrome #hypermobility #atlantoaxialinstability #craniocervicalinstability #cervicalcollar #dysautonomia #pots #mcad #mastcell #anaphylaxis #gofundme #helpplease #thanksinadvance #blessed
So frustrated! Now my hands are starting to break out with Dyshidrosis again. Screw you, MCAD! They itch so bad, I’m gonna lose my damn mind! Come on, Benadryl! • What the hell is Dyshidrosis, you ask? In me, it is triggered by the Mast Cell issue, but generally Dyshidrosis, also known as dyshidrotic eczema or pompholyx, is a skin condition in which very small, fluid-filled blisters appear on the palms of your hands and the sides of your fingers. The soles of your feet also can be affected. • Also known as PURE HELL! . . #chronicillness #dyshydrosis #mastcellactivationdisorder #mcad #mcas #mastcell #rash #flaring #breakout #pompholyx #itching #miserable #dyshidroticezcema #spoonie #spoonieproblems #chronicallyraven
STAPPP! @modelmeals shrimp "pad Thai" was A DAY SAVER & tasted amazing. Without these pre made, ready to quick heat up meals I would have stared at the fridge & then found a "snack" versus FOOD or called it a day. Portion size is so perfect. STUFFED. I hope to see this offered again bc 🍤🍜🙋🏻‍♀️ try #modelmeals link in bio for $25 off $40, all first timers get this offer! BUT if you use me link I get $25 too! If you know any part of my non insurance covered medical situation you know that 25 off 40 is HUGE to me! Try it out - save yourself time and sanity 😊🌟💛 #eateanfeelgood #activehealing #chroniclyme #msids #autoimmune #foodismedicine #antidiet #mastcell #grainfree #glutenfree #dairyfree #soyfree #cornfree #fats #carbs #paleo #whole30
Weekend well spent celebrating one of our girls! • Sometimes the best way to recharge is to spend time with the people you care about - especially if that means playing in the water in 80 degree heat. Who said summer is over?! • While they sipped on rose, I stuck to my @drinkdripdrop. My body is still in recovery mode so the perfect combination of sodium, chloride, potassium and magnesium aided in my recovery. Remember thirst is just a symptom of dehydration, dehydration is not thirst. Be aware of these other symptoms: dizziness, headache, dry mouth, muscle cramps, dry skin, & fatigue 💦
•this is always a good reminder. Much easier said than done, but still. Oh! I also made some ✨highlight✨ albums up on my page.. it’s all stuff that makes me happy 😊 Check them out if you want! 💚 #begentlewithyourself 💙💚💙💚💙💚 . . . . . . . . . . . #chronicillness #chronicpain #raredisease #disabledandcute #cripplepunk #eds #heds #hypermobileeds #ehlersdanlos #ehlersdanlossyndrome #pots #IBD #IBS #dysautonomia #hypotension #syncope #fainting #mcas #mcad #mastcell #mastcellactivationdisorder #mastcellactivationsyndrome #spoonie #spooniewarrior #zebra #zebrastrong #bendyaf #darkcomedy
I'm spending quality time with Hank. He's such a good boy. #dogmomproblems #dogmomlife #mastcell #hankthetank
Oven roasted cooked salmon from frozen with red bell peppers and parsley on top served with steamed broccoli and fried leeks. My dinner tonight with my partner as we watch the weather forcast anticipating the storm. Always low histamine #lowhistaminediet #histamineintolerance #histamine #lowhistamine #diet #wheatfree #dairyfree #freeform #glutenfree #brunch #winterdish #vegetarian #vegtables #vegan #veg #veg #mastcellactivationsyndrome #mastcell #ibs #plantbaseddiet #beetroot #picoftheday #instafood #instagood #Tesco #sanisburys #aldi #almond #salad
•this machine right here... is my new best friend. We have a date every Friday night at the hospital until my new cardiologist changes it back to homecare. But for now, I’m okay with this. It gets me out of the house.. it gave me a reason to do my makeup and I wore my lucky Black Sabbath tee 🤷🏻‍♀️ #salineinfusion 💉 . . . . . . . . . . #chronicillness #chronicpain #raredisease #disabledandcute #cripplepunk #eds #heds #hypermobileeds #ehlersdanlos #ehlersdanlossyndrome #pots #IBD #IBS #dysautonomia #hypotension #syncope #fainting #mcas #mcad #mastcell #mastcellactivationdisorder #mastcellactivationsyndrome #spoonie #spooniewarrior #zebra #zebrastrong #bendyaf #darkcomedy
No makeup, post-therapy selfie from this morning brought to you by these eye wrinkles 👀 Weekly therapy from an amazingly helpful and empathetic therapist (who takes my insurance!) has been key to maintaining my mental health while dealing with chronic illness. Having an unpredictable, disabling condition does a number on your mental and emotional health. I’ve struggled with chronic illness for years, but my #ehlersdanlossyndrome diagnosis in May 2017 sent me into a bit of a tailspin. That whole “incurable, progressively disabling” thing; you know, that old chestnut. • Thanks to a great therapist and a committed wellness practice, I am in a much better place emotionally now. I’m working on practicing radical acceptance of my circumstances, my health, and my life (shout to @tarabrach for that one!), and building joy into my days, even the ones with pain. • Has therapy helped you? • • • [image description: Eliza leans against her car and squints and smiles into the sun.] • #ehlersdanlossyndrome #ehlersdanlos #chronicillness #chronicpain #dysautonomia #raredisease #mastcellactivationsyndrome #mastcellactivationdisorder #mastcell #mcas #mcad #posturalorthostatictachycardiasyndrome #pots #potsie #selfcare #chronicbabe #butyoudontlooksick
Thank you @nathaliescuisine for the tip. I order some Items from @koro_de Bio cococnut juice cuttings "geile schnitte ", cashew puree (not for me), cranbeeries without suger, bio goji berries. The cococnut cuttings are very delicious. Yummy😀 . . . #chronicillness #chronicfatigue #chronicpain #invisibleillness #invisibledisability #spoonie #spoonielife #spooniefamily #spooniestrong #POTS #TMJ #eds #heds #MCAS #mastcell #HIT #dysautonomia #hypermobility #histaminintoleranz #ehlersdanlos   #zebrastrong #koro #mylife #ehlersdanlossyndrome #dontjudgeaperson #dontjudge #alwaysfighting #chroniczebra #butyoudontlooksick #fightlikeawarrior
Day 17: SELFIE. Wow, we’re chugging along! We took our trip into the mountains last week... for much needed self-care. One stop was an alpaca farm. So fun! -Kara, DAF Creative Director 💙 Tag us in you post! #teamdaf #selfcareseptember @dysautonomiasc to find you easier * * * #dysautonomia #dysautonomiaawareness #ehlersdanlossyndrome #mito #chronicillness #teamdaf #invisableillness #mastcell #mastcelldisease #gastroparesis #sickofbeingsick #sick #ehlersdanlos #potsie #potsies #potsy #pots #eds #tachycardia #lowbloodpressure #mitochondrialdisease #autonomicdysfunction #salty #highbloodpressure
This is where my diagnosis is at as of now- poly allergy. I was honored to be part of Harvard’s Undiagnosed Disease Network in May (I guess it has been that long since my last post) where I met with five different physicians who were experts in Rheumatology, Allergy, Dermatology and Environmental/Occupational Exposures. It was a whirlwind of a week filled with patch testing (215...again...4th times a charm right?) and more allergy testing which revealed more things I’m allergic to- almonds, cats & dog dander (and no, I will not be parting with any of my animals- I’ve just been told not to rescue anymore 🐕 🐱) oak trees and hazelnuts on this round along with blue dye, oils and tyramines (it’s ok, I had no idea what they were either!) So I think I’m at about 30 new allergies since 2015. And the verdict on whether I have Mast Cell Activation Disorder is out there as well. Harvard will be releasing a follow up conclusion but I haven’t received yet. (It’s hard to be anxious about the lengthy time for review after they paid for my trip, lodging and to see so many incredible physicians!) So patient I remain. And the amazing news is that my skin and joint pain are looking pretty damn awesome! I think that the combination of the 8 months on the bi-weekly Dupixent injection, finally testing that I am in the normal range for Vitamin D (after being deficient for almost 3 years) and being pretty diligent about what I consume has paid off. So me and my trusty “In case of Emergency” bracelet are just going to try and enjoy our journey for a while. A huge Thank You to all of you that have asked how I’ve been doing and sent prayers and positive thoughts my way- your support has gotten me through this crazy twist more than you’ll ever know! #dupixent #inflammatorydisease #mastcellactivationdisorder #allergiesgotmelike #enjoythejourney #undiagnosed #mastcell #vitaminddeficiency #skinrashes #cromolynsodium #inflammation #gallates #sodiumbenzoate #formaldyhydefree #patchtest #harvard #UDN #medalert #ivegotthis #chronicillness #keepmovingforward
Having a chronically ill child makes you go through so many emotions...one day you are strong and optimistic and the next day you are exhausted and weepy. Tonight I am feeling broken and so sad...I can not take my daughters pain away and it is heartbreaking. I am feeling alone and weak and helpless. I want to sleep and rest...and dream of my daughters pain going away...and wake up in the morning and have it come true! * * * * #mcas #mastcell #pots #eds #dysautonomia #chronicillness #dysautonomiaawareness #potsawareness #potsie #tachycardia #invisibleillness #chronicpain #chronicfatigue #fibromyalgia #syncope #invisibleillness #immunedifficiency #immunedisorder #nevergiveup #rnycommunity #rnyfamily #rny
Goodness gracious you guys, things have been so hectic these past few weeks that I haven’t had the change to really celebrate and thank all of you for helping me to become a finalist in the #WEGOhealthawards for my advocacy work through my YouTube channel. I am SO excited! If I am chosen as one of the winners I will be receiving my award at the WEGO Health Award Ceremony in, get this, BOSTON!That is right, the awards will be held right at home for me! I can’t wait! . I still can’t believe that I ever made it this far, the honor and sense of responsibility I feel is immense. Hopefully even if I don’t win I am still able to attend and finally meet some of the other wonder friends and finalists attending! It feels surreal seeing my name amongst some of the biggest inspirations in my life and I can not thank you guys enough for this opportunity! Not only did you nominate and endorse me, but I am only in this position because of your support of my videos . YOU are the reason I do what I do. You are my friends, my family, my purpose. . . When I was first diagnosed I was totally lost. I was looking for the kind of hope that could only come with forming a connection with another person who was actually LIVING a life like I was, not just surviving. When I couldn’t find that person, I realized that I was going go have to become that person. So I, the most camera shy person you have ever known, picked up my camera and filmed my very first video... and just never stopped (and I’m not planning on it any time soon 😉). . . But guys, WE did this! We got here! And guess what?! I’m not even the only EDSer nominated in my category! Now THAT is raising awareness! Congratulations to Mickey @life.with.stripes for also being a finalist. I am so blown away at this opportunity for our voices, as a community to be heard. I can only hope that, through this platform, I (we) are able to lift up the voices of those who feel so far unheard. That is what truly matters. 💜 . . I know that EDS/HSD is a huge spectrum and I want everyone to feel equally represented. What is something that you feel is often overlooked about our/your condition that you would like to be talked more about
Gah 😍 my standard 🥩🌱 #grassfedgrassfinished sirloins topped w horseradish - roasted #brusselsprouts w/ red potato, garlic, evoo & of course #rawpumpkinseeds 💛 I finished it 2 min ago and am all ready to hit up that pie 🍓🥧 👉🏻 #eateanfeelgood #activehealing #chroniclyme #msids #autoimmune #foodismedicine #antidiet #mastcell #grainfree #glutenfree #dairyfree #soyfree #cornfree #fats #carbs #paleo #whole30
‘at the end of the day, we can endure much more than we think we can’ • • • this weekend was a freaky one. Friday night I started feeling like I was having a gallstone attack ** my gallbladder was removed ** and my blood pressure was dangerously high at 154/122 ... like why? Mind you, my ‘normal’ BP is 90/60 🤦🏽‍♀️ • • • I’ve had an ‘episode’ like that before but had other stroke like symptoms as well with it. This one just came with INTENSE pain. Of course, I avoided the ER like the plague and sat at home infusing saline praying I’d make it through that tough time ** Spoiler : yah girl made it through ** • • • This week will include phone calls with my surgeon, Lyme dr, and team of cardiologists ,,🤞🏽🤞🏽we can keep the BP down in the meantime.
🍓🥧mixed berry #paleo #pie - I created a new crust today, I have high hopes for it. Fresh blueberries, blackberries & #highhistamine strawberries (first time I've tasted a strawberry in 5 years - they're good) The pie is meant to be served cold. • crust: 1.5 c blanched almond flour - .5c ground flax meal - 1/2c. melted coconut oil - 2 tbls. local honey - 2 tbls. @greatlakesgelatin gelatin (red can, not collagen)- baked at 350 for 30m. cool completely, add your fresh berries. That's it! #eateanfeelgood #activehealing #chroniclyme #msids #autoimmune #foodismedicine #antidiet #mastcell #grainfree #glutenfree #dairyfree #soyfree #cornfree #fats #carbs #paleo
DATING WITH A CHRONIC ILLNESS I’ve ben hesitant to make this post, because honestly, our relationship isn’t any different than a “healthy” persons. ••• All people come into partnerships with differences, needs, and pasts. Having EDS is just one piece of what I bring into our relationship. ••• If you find someone who doesn’t respect your needs, that’s not the relationship for you. Simple as that. If you are bearing the burdens of your boyfriend but he isn’t empathetic towards you, that isn’t a healthy relationship. ••• A good parter will love you for you, the good and the bad. Yes, you may need to have even more open lines of communication around your health, but every relationship has these things. ••• Do you have any questions about dating while chronically ill?
The combination of rainy weather and PMS has me wanting to store food like a little chipmunk. 🐿 In the week or two before my period, my symptoms get way worse. Progesterone ⬆️ = joint laxity ⬆️⬆️⬆️. Having food ready to go when the pain hits is key. I’m ready now! We got soup, we got muffins, we got oatmeal, we got your weight in roasted veg, AND SO MUCH MORE (in the freezer). • I’m trying to get better at setting myself up for success during a flare by preparing as much as I can. Because pain is always going to be a big part of my life, my work is to accept it and learn how to make my pain as bearable as possible. A big part of that is having easy food on hand to keep me nourished (oh and a serious @netflix queue). • And ummm this is the fridge of one person 🙋🏻‍♀️ How on earth did I ever share one fridge with three roommates?! • • • [image description: a fridge packed with all kinds of deliciousness] • #ehlersdanlossyndrome #ehlersdanlos #chronicillness #chronicpain #dysautonomia #raredisease #mastcellactivationsyndrome #mastcellactivationdisorder #mastcell #mcas #mcad #posturalorthostatictachycardiasyndrome #pots #potsie #selfcare #chronicbabe #butyoudontlooksick
Struggling very much. Working so hard to try to keep myself stable with these mast cells. My energy level is zero. Just surviving. Taking it minute by minute. #mastcellactivationdisorder #mastcellactivationsyndrome #mcas #mastcell #dysautonomia #hypermobility Photo from: @itsapotsielifeforme
🚗We ran errands yesterday and by the second to last stop I nearly collapsed and Chris had to carry me out to the car while everyone stared... two people did offer to help but my husband is super buff so he can totally carry my tiny self. That sucked, f*** you POTS!! So I got to wait in the car while the hubs could pay for our purchase. Anywho, before my gracefulness at the store Chris got me this beautiful ocean jasper bracelet (swipe) and a couple new crystals. (Which alwaysssss make me happy) 💛 What made you happy yesterday? . . . . . . . . . #chronicillness #chronicpain #raredisease #disabledandcute #cripplepunk #eds #heds #hypermobileeds #ehlersdanlos #ehlersdanlossyndrome #pots #IBD #IBS #dysautonomia #hypotension #syncope #fainting #mcas #mcad #mastcell #mastcellactivationdisorder #mastcellactivationsyndrome #spoonie #spooniewarrior #zebra #zebrastrong #bendyaf #darkcomedy
Thank you @histaminfreigeniessen for the tip. I order from @tesanobio some items: bauckhof hot apple Cinnamon, byodo cider vinegar, lifefood crawnchies pumpkin curcuma, bauckhof wonderbread oat bread baking mixture, laselva Bio arrabbiata di peperoncini, simply raw creme sweet coconut, bauckhof apple pieplant puree, rabenhost vitamine Smoothie, eden blueberry mother juice, morgenland cococnut milk Mango, rabenhorst antioxidantien bio mini. All are glutenfree, lactosefree, histaminfree. . . . #chronicillness #chronicfatigue #chronicpain #invisibleillness #invisibledisability #spoonie #spoonielife #spooniefamily #spooniestrong #POTS #TMJ #HSD #eds #heds #MCAS #mastcell #HIT #dysautonomia #hypermobility #histaminintoleranz #ehlersdanlos  #zebrastrong #chroniczebra #ehlersdanlossyndrome #dontjudgeaperson #alwaysfighting #mylife #tesanobio #butyoudontlooksick #fightlikeawarrior
Day 16: AFFIRMATION. Team DAF is a fan of #keepgoing It’s all about quality of life. It may not be easy but it is worth it! ...side note. We hope all have stayed safe... I really, really need the rain to stop. All I can do is keep going and wait it out! 💙 Tag us in you post! #teamdaf #selfcareseptember @dysautonomiasc to find you easier * * * #dysautonomia #dysautonomiaawareness #ehlersdanlossyndrome #mito #chronicillness #teamdaf #invisableillness #mastcell #mastcelldisease #gastroparesis #sickofbeingsick #sick #ehlersdanlos #potsie #potsies #potsy #pots #eds #tachycardia #lowbloodpressure #mitochondrialdisease #autonomicdysfunction #salty #highbloodpressure
I also missed #NationalGymnasticsDay by a just a bit, so I figured I would share my miraculous feat from Party in the Park this summer. (You can catch the full video on Twitter!) Every so often my body pulls off miraculous things that even I don't understand. But I'm eternally grateful with everything it can still eke out. This goes strangely well in contrast to my last post. The juxtaposition speaks to the confusion I wrestle with. . Gymnastics was my life. It saved me from things I can't even explain. It also caused me a lot of pain and trouble, but in comparison to what it offered, I'll never be able to put words to it. Ever. Even today, it's where I put so much of my time and attention. It's everything to me. My body breaking down was most devastating for this reason. I felt like I lost another massive part of my identity -- the last remaining strand of it since I had to leave gym before I was ready. . But then I get small moments like this, and feel a little closer to home ;) . 🤸🏻‍♀️♿💪🏻 . . . . . . . #disability #chronicillness #chronicpain #ehlersdanlos #ehlersdanlossyndrome #hypermobile #hypermobility #dysautonomia #mastcell #mastcellactivation #erythromelalgia #manonfiresyndrome #EDS #HSV #POTS #MCAS #spoonie #spoonielife #gymnastics #gymnast #dance #dancer #handstand #yoga #headstand #mentalhealth #trauma #wheelchair #wheelchairuser
I had a panic attack last night that triggered the Hemiplegic Migraines that I get. For those who aren’t familiar with HM, I decided to post this info graphic. I wouldn’t wish these episodes on anyone! . . #hemiplegicmigraine #HM #migraines #migrainewithaura #migrainewarrior #chronicillness #raredisease #seizures #temporaryparalysis #pain #chronicpain #spoonie #spooniezebra #fightlikeawarrior #mastcell #mastcellactivationdisorder #triggers #migrainetriggers #chronicallyraven
This amazing inspirational piece! 😍😍. $34!! Wear long or short! Dysautonomia jewelry for a cause https://m.facebook.com/Dysautonomia-jewelry-for-a-cause-1907029659627578/ https://m.facebook.com/Dysautonomia-jewelry-for-a-cause-1907029659627578/ 15% of sale will go to Dysautonomia Advocacy Foundation, DAF! Help the cause! #TeamDAF   #jewelry #jewelry4acause #jewelryforacause #dysautonomia #dysautonomiaawareness #ehlersdanlossyndrome #mito #chronicillness #teamdaf #invisableillness #mastcell #mastcelldisease #gastroparesis   #sickofbeingsick   #sick #ehlersdanlos #potsie #potsies #potsy #pots #eds #tachycardia #lowbloodpressure #mitochondrialdisease #autonomicdysfunction #salty #suicideawareness
Australia has such good Asian food & this meal was at a beautiful Vietnamese restaurant in Sydney 🍚 • This was fried kumera dumplings filled with mushrooms, and with a lime, tamari & chilli sauce. They were slightly sweet & slightly savoury, made from scratch, gluten-free & vegan 🥟
Some B cell x mast cell 😤😤👌👌👌 #hatarakusaibou #cellsatwork #mastcell #Bcell
Sometimes I know it's going to be too much, but I do it anyway. Last year I would not have considered attempting a day like today, but I've improved enough for various reasons that I have more spoons in the bank, so my recovery time is better. I'm trying to not let my fear of calamity keep me from doing things, and I'm trying to take advantage of my improvements, just in case. My family and I went to Boston and Spectacle Island (I had never been there, it was really cool and fun to take a ferry through the harbor) to celebrate my mom's birthday. I'm wiped out now but I'm pleased I made it through the day and we all had a good time, and my mom had a nice birthday. I definitely overdid, but almost everything I do is right on the edge of my capacity, so if I didn't push myself I'd never do anything, right? We'll see how I feel tomorrow... 😬 Does fear of having an emergency limit your plans? It's definitely a struggle for me.
SKIN CHARACTERISTICS OF EDS (caution: picture two is a little gnarly) Have you ever heard of collagen? Collagen is the most abundant protein in the skin. But, Ehlers Danlos causes a mutation in this collagen - meaning that there are visible differences in EDS skin vs normal skin. ••• ATROPIC SCARS also known as “cigarette paper” scars, are usually lightly colored and feature dented skin. A horizontal pattern is often visible through the mark. ••• HYPERTROPHIC SCARS are very raised, often red or pink, scars. These scars are often the result of minor trauma, but heal very poorly due to collagen defects. ••• STRIATIONS Striations, or stretch marks, are the first picture above. Patients with Ehlers Danlos have striae on the stomach, hips, and calves. ••• Please note, stretch marks, hypertrophic, and atrophic scarring can be present in the normal population. However, excessive amounts of these features may lend towards EDS. ••• Do you have any of these skin characteristics?
This upper respiratory infection is kicking my ass tbh, but I managed to get out to the store today (apparently food stuff is an important Personing Thing). While I was out I figured I may as well stop at my favorite natural food shop and re-up my herbal tea supplies 😍 Even took my own damn jars this time. FeelsEcoFriendlyMan. I swear, I will become as Minimal Waste as a chronically ill life will allow 😤
In the beginning I was scared. When my body first went through a tectonic shift I felt alone and silently wallowed in a fear so deep that my psyche floated vulnerably around nightmares of death and dying. In the beginning there were times I would go to bed wondering if I would wake up. It feels unreal to say this now but it's true. Something felt so profoundly wrong with me and not knowing became me. I started digging and digging and sifting and pivoting and found @healing.histamine and those heavy fears slid slowly off my back. Yasmina was the first source that eloquently blasted truth about this issue and made me feel safe, confident, in knowing. Knowing there was a dedicated workhorse funneling all her precious time into researching mast cell madness, constantly refining protocols and beautifully, tenaciously acknowledging and scraping at all the intersectionality of this web of chronic illnesses, made me feel at ease within my own body. Her work, mantra and philosophies completely transformed my early path here. I'm devastated to see her go. She inspires me on so many levels and I will fiercely honor that by living my tireless truth - continuing to dig deeper and deeper and deeper in this journey ❤️ #healinghistamine #histamineintolerance #yasminaykelenstam #mastcellactivationsyndrome #healingjourney #histaminecheats #histaminarm #histamine
Self-care September Prizes!! DAF Swag for cozy comfort and awareness. Samples from Banana Bag, doTerra Wellness Advocate donations of essential oils of your favorites! Top participants will be in drawing for prize packs! It’s not too late to start today and be in the running for prize packs! 💙 Tag us in your post! #teamdaf #selfcareseptember @dysautonomiasc to find you easier * 🌟PRIZE WINNERS ANNOUNCED IN EARLY OCTOBER FOR AWARENESS MONTH! This has no affiliation with IG or FB * #dysautonomia #dysautonomiaawareness #ehlersdanlossyndrome #mito #chronicillness #teamdaf #invisableillness #mastcell #mastcelldisease #gastroparesis #sickofbeingsick #sick #ehlersdanlos #potsie #potsies #potsy #pots #eds #tachycardia #lowbloodpressure #mitochondrialdisease #autonomicdysfunction #salty #highbloodpressure
Day 15: I AM... AN ARTIST “Dichotomy of Wind and Waves.” 🌊 I am many things. ...a dysautonomia patient is not one. I have a rare disease, acromegaly. (All these diseases need to join together to be heard...) Anyway, my life is changed forever because of it but I am more than my disease! -Kara, DAF Creative Director 👩🏻‍🎨 Tag us in you post! #teamdaf #selfcareseptember @dysautonomiasc to find you easier * * * #dysautonomia #dysautonomiaawareness #ehlersdanlossyndrome #mito #chronicillness #teamdaf #invisableillness #mastcell #mastcelldisease #gastroparesis #sickofbeingsick #sick #ehlersdanlos #potsie #potsies #potsy #pots #eds #tachycardia #lowbloodpressure #mitochondrialdisease #autonomicdysfunction #salty #highbloodpressure
You can’t have real flowers in hospital anymore & Dan knowing this still wanted to get me something to brighten up my bed space, so he went out & brought me some pretty fake ones. The best bit is I’ll be able to take them home & keep them too 💐 #flowers #hospital #happy #inlove #lovehim #lovethem #love #happy #sick #spoonie #sicklife #mcas #mastcell #mastocytosis #eds #ehlersdanlossyndrome #ed #edfam #recovery #myworld #boyfriend #bf #filter #fb #s4s #l4l #fff #cute #cutie #epilepsy #seizures
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