#mastcellactivationsyndrome

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@adventuresinfibroland inspired post! This is my MCAS emergency bag which I (somewhat) jokingly refer to as my "I don't wanna die bag". It's a cheapo pencil case purchased at a big box store for a few dollars. I wanted something as streamlined as possible to fit in my purse, but easy to grab and carry on its own. It houses my epipen, inhaler, emergency meds, and emergency info. I do carry many more meds in a different spot in my purse; this is just for acute reactions. After having a scary anaphylactic reaction while teaching (don't worry... there were like 5 nursing students in the room!), I had a savvy student point out that I needed a medical bracelet (yay, pretty @laurenshopeid ) and I needed to start every semester by informing my students of what the bag looks like and where its located. Vicky's going to make a great nurse one day! 😄
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
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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
#food is #poison with #mastcellactivationdisorder #mastcellactivationsyndrome #mastcelldisease #mastcellactivation causing frequent #anaphylaxis attacks. I had to get a #ged vs a #highschool #diploma because I was too #sick 😷 #sick at #school and then was too far behind to catch up with #onlineclasses #onlineschool #english #englishclass
I wanted to help people. I wanted to not be in pain all the time. I soon learned those 2 things together is what being a coach means. No. I'm not a health practitioner but I know what works for me. Exercise and clean eating. My Drs are impressed by my muscles as they support my joints and my weak ligaments. I'm never going to stop trying to fight for myself and others. Last week I met a beautiful group of coaches on a trip to Miami that I earned from my generous coach. These women all had different reasons why they wanted to be coaches - earn an income to support their family, be home with their kids, heal an injury and be role models for others, lose weight and be healthy, get out of unhappy situations...but overall the comments were about their teams - how proud we are to be a part of a great team and to support our own. I love this company and everything it allows me to be. We are all different - but we are all the same. So happy to be part of something so positive!
Managed to sit in the living room for a little while with my puppy today💛 Flushed and swollen from the usual MCAS flare. Post-op got rescheduled for tomorrow morning because of traffic but I’ll be sure to update and show you guys my x-ray tomorrow to see how well the hardware is positioned. 2 ankles fixed. No more constant ankle dislocations!:) Even leg lengths to help my arthritic si joints yay. The recovery is always slow and painful but I’m taking it easy. Haven’t mentioned it before but I’ve been a part-time wheelchair user for the last year because of multiple hip dislocations daily, badly displaced si joints, and POTS. I’m in the process of getting a custom wheelchair. #surgery #chronicillness #puppy #anklesurgery #eds #pots #mcas #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #mastcellactivationsyndrome #thoracicoutletsyndrome #bipolardisorder #bipolar1 #mentalillness #zebrastrong #puppy #maltipoo
I've gone back and forth about this in my head a lot... Do i wear shirts & tank tops that allow my line to be visibe.. Or do I keep it covered? I try to conceal my PICC and the fact that I am sick, not because I'm ashamed of scared, but because most days I want to be normal. And if I feel good enough to get out of the house I dont want to have the "conversation" with a complete stranger. There are days when you have no idea I'm connected to an IV pump 24/7. When I tell people that, they actually look for a physical IV pole. I worked with a bunch of medics for 4 months and only a handfull of them ever actually saw my picc, or knew i had one, because I always kept it covered with a t shirt. I found this blouse at Kohls yesterday. It shows off my shoulders because I'm still over here trying to look cute, but it also concealed my line really really well. How visible you make a line or how much you try to hide it is 100% a personal preference. But sometimes, we all need a reminder that there is still a way to look a-mazing when you have iv lines, or scars, or feeding tubes. You are beautiful illness and all. Don't ever forget that.
On our evening walk through the park (no rain this time!), we passed by a baseball team holding a practice. One of the guys yelled, "Your dog is cute!!" and I swear Nellie pranced a little at that. We kept going and then suddenly heard someone yelling "HEADS UP!!" behind us and then a baseball hit the ground only a few yards from us. 😲 Nellie paused when the ball hit the ground, and then tried to go get it. 🙄 Because obviously every ball is for her, and anything that lands near her was obviously dropped accidentally and must be fetched. The baseball coach thought it was hilarious how excited she was about the ball; I was just glad she didn't get spooked by it, and seems to be finally getting over the skittishness from the dog attack the other week. #gimmealltheballs We also made the exciting discovery that there are large accessible gender neutral bathrooms at that park right by the playground, which was very convenient. If only I had thought to check that out yesterday before the storm hit... #goldendoodle #servicedog #trainingneverstops #wheelchairlife #ehlersdanlos #mastcellactivationsyndrome #dysautonomia #mobilitydog #medicalalertdog #accessibility #accessiblebathroom #genderneutralbathrooms
Work Shannon vs At Home Shannon I love sweatpants. Like I really love them. The first thing I do when I get home is change into them. Clearly wearing sweatpants to work isn’t an option so I settle for jeans and usually a cute top&sweater. As long as I’m not at work you can find me dressed like a bum because it’s the most comfortable for me. Although I love my relaxing clothes it is nice to have a reason to wear nicer clothes throughout the week (and a reason to wear a bra) 😉 Also, to piggy back off my second to last post about saying no: I have not been doing well guys. I am so overbooked and overwhelmed and stressed lately and it is so so not good for me. This week is going to suck with the amount of commitments I have but next week I’m traveling to Colorado and am very much looking forward to having good times with my family :) Will I ever learn to say no? Or will my health just gradually decline until I have no other choice. Stay tuned y’all ✌🏻😬 #Spoonie #ChronicIllness #InvisibleIllness #AutoImmune #Warrior #AntiPhospholipidSyndrome #UndifferentiatedConnectiveTissueDisease #GERD #POTS #OrthostaticHypotension #IST #MastCellActivationSyndrome #Sjorgens #Raynauds #Potsie #Dysautonomia #Sick #DisabilityAwareness #StayStrong #SpoonieWarrior #SpoonieCommunity #SpooniesUnite #ButYouDontLookSick #Awareness #RareDisease #Advocate #LifeWithChronicIllness
My specialist lives 4 hours out of town, we have recently discovered ridesource and can have a taxi take us for free! It's been so amazing since both my mom and I are always so fatigued and exhausted, we always have to nap after our appointment before driving home. It has been such a blessing to have someone else drive us! My favorite part about this far trip is this waterfall, it's less than a two-minute walk from the parking lot so we can always get to it even when we're hurting!!! It. Was. SO. Beautiful today. Took my breath away like always 💫💜 . . . #mastcellactivationdisorder #mastcellactivationsyndrome   #mcad #mcas #ehlersdanlossyndrome #eds #heds #hypermobility #stretchyjoints #swelling #inflammation #collagendefect #gastroparesis #tachycardia #posturalorthostatictachycardiasyndrome #pots #syncope #pain #chronicpain #chronicfatigue #zebrastrong #edssurvivor #hydrationhelps !
“When it rains, looks for rainbows; when it’s dark, look for stars ✨” . . . I’ve just been chilling in bed as much as possible, recovering from my concussion. I had to go back to the ER because my doctor was concerned with my headaches spreading and the potential for a slow bleed, but my scans were all clear- yay! So it’s just letting things heal for now. Tomorrow I’ve got an MRI for my knee that I injured during the move because it’s not healing well. There’s not much to do for it, but we just gotta make sure we know what’s going on. And then I see an orthopedist that specializes in feet/ankles. I’ve been having lots of ankle issues, so we’re gonna see if there’s anything to be done for my pain- it’s like my ankles are constantly sprained right now. But chances are there won’t be any options with my EDS. But we can always try! And if not, I’ll find a way to keep going. 😊 . . . #sooonielife #spooniestrong #ehlersdanlossyndrome #mastcellactivationsyndrome #mcas #fibromyalgia #gastroparesis #photography #astronomyphotography #bloodmoon
•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
I had my 3 month checkup earlier and this cute little shadow box is my favorite part of my oncologist’s office! I have been a bundle of anxiety over the last week. All manufactures have stopped the production of IV Benadryl nationwide. For a gal dependent on the continuous Benadryl pump, news of the shortage is not just SCARY but downright petrifying. I am sure you can imagine the mental anguish of hearing, “you’ve got x number of days left before we are out of Benadryl,” and knowing there isn’t another way to obtain more. If that stress is not enough, there is also an EpiPen shortage. So, obviously MCAD patients feel defeated with limited accessibility to the main medication that keeps symptoms managed. Now when reactions get out of control and our throats swell shut, there is no EpiPen to stab ourselves with as a recourse either. I recognize this predicament is bigger than me and that I should give it to God. He has always come through before. Yet, it’s easy to forget in the midst of a crisis. I have what I need for the moment and thats what matters.
Y'all. I made some BOMB soup with my new crock pot!! It can be so frustrating when our diet is so limited, my friend just gave me this crock pot so I chopped up all the foods I can eat and threw them in there!!! #potatoes #carrots #broccoli #onion #garlic #saltandpepper #chickenbroth 😍😍😍😍😍😍😍 I think I'm going to be eating soup ALL. WINTER. 😍😁🤘🤘 . . . #mastcellactivationdisorder #mastcellactivationsyndrome   #mcad #mcas #ehlersdanlossyndrome #eds #heds #hypermobility #stretchyjoints #swelling #inflammation #collagendefect #gastroparesis #tachycardia #posturalorthostatictachycardiasyndrome #pots #syncope #pain #chronicpain #chronicfatigue #zebrastrong #edssurvivor #hydrationhelps !
Oh allergy meds, how I’ve missed thee✨💕 . So glad to be done with testing for a while🙏🏻 . . Anyone else keep an emergency med bag? . Mine also has an Auvi Q injector, inhaler, ZENBand, CCell, a canna-infused essential oil roller, Kleenex, and homemade lip balm. (Thank goodness for pockets!)
“Hope is quite different from optimism, which is more superficial and liable to become pessimism when the circumstances change. Hope is something much deeper...” ✨ wise words from Desmond Tutu #archbishopdesmondtutu #hope #thebookofjoy
“Stop freaking out about going to the neurologist. You’ll be fine.” —🐶🦁 . . More testing today, and I wish I had a better attitude. I just can’t get past the exam he gave me last time- I’ve been having flashbacks and I know it sounds strange, but I can still feel him on my feet🙈🤦🏻‍♀️ . So it’s been all about fighting anxiety, which hasn’t been helping my pain or cold symptoms. . . On the bright side, I can start taking my meds again once these tests are over, and that will help drastically. I also shouldn’t have to see him today- nurses only. (Not that they were much better🙄) . . I need to force myself up to wash the pain salve off my skin, and then Mom will be home and ready to go. I’m so grateful she’s coming with me (and driving) but I feel awful that she had to take a half day off. She uses almost all of her PTO for appointments. . . . Because today will be intense and probably too much for me, we want to do another #MomPost tonight. . . She’s really loving guest posting🦋 I don’t think she’s ever had an outlet for this stuff either. . . . Hope you’re having a good day!💖💜
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 feel utterly terrible today, but there is no place more peaceful and beautiful to recover than my parents in law’s exceptional home. For my followers who aren’t family, Cam and I bought a house! We are beyond ecstatic, but because of the dust and allergens in our rental, and moving boxes (plus dozens of people touring) we decided to spend our last 12 days as renters in a safe environment. Luckily have my amazing in laws have so graciously given up a room for us, and I get to work from this amazing picnic table today, as I recover from a crazy weekend of packing! Moving with chronic illnesses is no joke! . . . . . . . . . . #spoonielife #spoonieproblems #mcas #mastcellactivationsyndrome #spoonie #spoonies #spooniesisterhood #spooniewarrior #fibromyalgia #fibrowarrior #potssyndrome #potswarrior #mastcellwarrior #arthritissucks #arthritiswarrior #menieresdisease #menieresdiseasesucks #staysalty
⚠️acupunture⚠️ yesterday was round two of acupuncture treatment and after the first treatment wasn’t sure if I noticed a difference but after round two I am making a point to take note of any changes day after day till treatment 3 and see if this is working at all. . . #chronicillness #invisibledisability #disability #disabled #pots #awareness #raredisease #chronicfatigue #zebrastrong #chronicpain #disabilityawareness #mayoclinic #panicattacks #superventriculartachycardia #svt #Neurocardiogenicsyncope #ncs #narcolepsy #cysticfibrosis #cf #lymesdisease #chronicillnesswarrior #spoonie #eds #servicedog #servicedoghandler #mastcellactivationsyndrome #mcas #disorders #rarediseases
My go to snack! I love @siggisdairy. Finding safe snacks with #mcas is like finding gold lol
I recently had my 365th doctors appointment on this journey. From the time I received my first diagnosis to now, I have spent an entire year of my life being shuffled in and out of exam rooms— rooms that have been privy to some of my darkest days, but have also been a place of great light. In these rooms I have built relationships with the heroes in lab coats who have not only saved my physical life, but have taught me to live resiliently and be brave in the face of the big, scary unknown. In these rooms I have learned that my strength and my will to live knows no limits. I have learned that chronic illness is a burden too big for one person to carry, and it’s okay to ask for help. In these rooms I have learned to allow myself to be vulnerable and honest about my ever changing reality. The girl who walked into that exam room, just a couple floors below this one, and cried as she first heard the words ‘chronic’ and ‘no cure,’ she knew life would never be the same again. She knew this would be hard. What she didn’t know? She didn’t know it was the very beginning of a beautiful journey that would put her directly on the path for some of the most amazing things a person could ever experience. ✨ I’ll leave you with this, because sometimes music can speak our minds better than we can... “All the fights and the tears and the heartache I thought I'd never get through And the moment I almost gave up All lead me here to you. I didn't understand it way back when But sitting here right now it all makes perfect sense, Cause it lead me here to this” -This, Darius Rucker
Still shocked at the loss of one of our community members who has provided dietary healing tools for so many MCAS patients. ❤️ R.I.P. Yasmina Ykelenstam—& sending condolences to those who knew her personally 😢 If you haven’t checked out her site and recipes, you can find them at healinghistamine.com 🌿#shewillbemissed #pioneerofhealingmcasthenaturalway #yasminaykelenstam #healinghistamine #mastcellactivationsyndrome #mcas #histamineintolerance #hero
•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 love being a skincare chef✨🦋 finding this lifestyle is one good thing that’s come from my mast cell issues. . . That orange, ginger, clove combo in last night’s bath was a game changer- I even woke up with looser muscles.🤯 So I decided to whip up a pain salve with the same essential oils👌🏻 . . Hopefully it helps with this cold too. . It’s a first try, so the strength is a guess, but I think the texture turned out perfectly. . . My skin hasn’t been absorbing well lately, but I’ve found a few staples that it tolerates most days🎉 . This is a mix of coconut oil, sunflower oil, and candelilla wax. Plus essential oils and vitamins for targeted goodness🌿 . . What’s your fav pain-fighting oil?
Quiet. Stand Offish. Snobby. Unapproachable. Misunderstood— All things i’ve heard to describe me the last few years as i’ve navigated the crazy journey of chronic illness and trying to figure out where my life and career are going to go. What you don’t see behind my fake smile is the brain fog i’m fighting due to Dysautonomia/POTS and the 16 medications i’m taking a day. The constant nausea/dizziness/vertigo/tachycardia/fatigue i’m fighting. The fear of never knowing when you’ll pass out/have partial seizures. It’s a struggle to fit in or find yourself again after losing yourself in the chaos of being chronically ill. But one thing I have learned- To walk humbly, seek mercy, and love fully EVERY single day- because i’m immensely blessed💕 I never want anyone to know the battles i’m fighting, especially the patients i’m helping everyday! But stop and think- that you have know idea what people may be going through as to why they may be “quiet”😉 #dysautonomia #mastcellactivationsyndrome #posturalorthostatictachycardiasyndrome #epilepsy #anaphylaxis #ehlersdanlossyndrome #servicedog #gastroparesis #gjtube #tubie
You don't typically hear nice things about "big pharma", but @genentech / @novartis are rocking their patient support for #xolair I really feel "seen", thank you. I haven't had my first round of injections yet (waiting to complete my last test for #PoTS this week), but I'm so excited about their potential impact.
Welp, I made #glutenfree stir-fry and wound up having an #MCAS attack... and it’s probably partially because I skipped my mid-day med dose today. . What I thought was my #SJIA rash is (mostly) a mix-up with my mast cells. While I have these reactions more under control, it is still hard to carry meds with me all the time just in case this shit happens. . Being too hot, stressed, or being exposed to allergens bring up this flushing/rash. It’s hot. It itches. And, funnest of all, it brings along a very mild form of #anaphylaxis (see @hedonish for more on that). . #mastcellactivationsyndrome #myskinissohot #chronicillness #chronicpain #disability #FML #nofilter
Day 7 // 30 day challenge • Q: What was the biggest realisation you have had? A: That i will never have a 'normal' life but that isnt necessarily a bad thing. If i can help make just 1 person feel less alone on their journey, everything that i have gone through and will continue to go through will be worth it. 💕 • • • #eds #ehlersdanlossyndrome #pots #posturalorthostatictachycardiasyndrome   #zebrastrong #sicktofit #spoonie #mcas #mastcellactivationsyndrome #spinalinjury #invisibleillness #chronicillness #mentalillness #mentalhealth #mentalhealthawareness #ptsd #depression #anxiety #support #journey #recovery #advice #influencer
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
After two weeks of stem cell treatment here’s what areas I’ve noticed improvement in: 1. I’ve been sleeping much better. I’ve had multiple nights where I’ve slept over 12 hours! Now don’t get me wrong I did still have to get up to pee in the middle of the night but I was able to go right back to sleep no problem! 🙌🏻 Last night I was able to sleep through the night without even getting up to pee, and if you have Interstitial Cystitis you know what big deal this is!! Seriously that never happens! 😂 2. My skin has been healing faster than it has in years! Normally it takes me weeks to heal even a small cut and lately it’s been healing in just a few days! 3. For close to a year I’ve been doing what I call the Anna shuffle. When I sit or lay too long my knees, hips, ankles, and feet stop working. So when I get up to walk I look like a robot. I’ve only done this once or twice since we’ve been here, and those were during my first two days at the clinic. I have had 12 days straight with no painful joints and shuffling!!!🙌🏻 That’s huge for someone who always has joint pain. 4. My brain fog is lifting. For years now I’ve been living in a world where I have to write everything down or I’ll forget, and lately I’ve noticed my memory greatly improving! On the flip side I’ve been having bad headaches on and off, and somehow developed double ear infections. 🤷🏻‍♀️ My back pain and SI joint pain have increased and some of my Babesia symptoms have returned. Meaning I’ve had a few nights of drenching night sweats and chills again. Which I haven’t had in months. I’ve been told that all of that is perfectly normal and that the stem cells migrate to the places that need the most healing. All in all I’m still incredibly hopeful and optimistic that the stem cells are doing exactly what there supposed to! #stemaid #stemcell #stemcelltherapy #lymedisease #coinfections #babesia #mycoplasma #ebv #parasites #heavymetalpoisoning #leadposioning #chelation #vitaminb17 #interstitialcystitis #mastcellactivationsyndrome #mastcelldisease #ehlersdanlossyndrome #dysautonomia #heartwarrior #pacemakergirl #pacemakerclub #spoonie #chronicillnesswarrior #healingjourney #illuminatingillness
🌻 Should i start a vlog? Dm me if there is anything you would like me to do a video about 🌻 • All of us with chronic illness, invisible illness, disabilities, etc are all on the same journey. We maybe traveling at different rates and have different destinations but ultimately, we all just want to have a happy and fulfilling life. If youre looking at someone else wishing you had it together as well as them, i promise you, once upon a time they were in your position thinking the same thing about someone else. Youre not alone on this path 💕 • • • #eds #ehlersdanlossyndrome #pots #posturalorthostatictachycardiasyndrome   #zebrastrong #sicktofit #spoonie #mcas #mastcellactivationsyndrome #spinalinjury #invisibleillness #chronicillness #mentalillness #mentalhealth #mentalhealthawareness #ptsd #depression #anxiety #vlog #youtube #influencer #quote #quotestoliveby #journey #happiness #growth #recovery
•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
What I go through everyday is so hard. I cry almost everyday and people don’t see this side of me. I try to be as positive as possible all the time, especially at work. Chronic illness sufferers learn to kind of hide the shit they go through. Dermatologist is on the 25th guys and I’m praying someone can help me. I’m so desperate and my POTS is getting worse without drinking water. I’m running on 1% energy and I am using all my will power to stay at work. Going through this every single day is so tough. People that have a few rashes here and there that try to claim they have this condition have no idea. It’s not just the simple case of a few rashes, it’s my body swelling, my lungs closing up, losing the ability to stand. I wish people would stop claiming they have aquagenic Urticaria when they don’t. It’s not a condition to mess around with and it’s upsets me when people claim to have it and try to relate when they have no idea what they are talking about. On a real level though if you are concerned that you might have it, ask me or a doctor. I am willing to talk. But please don’t claim you have it if you haven’t have a diagnosis. What I go through is tough and is just getting tougher for me. Rant over. Just feeling a little bummed out and not good. #pots #potsie #posturalorthostatictachycardiasyndrome #ehlersdanlossyndrome #eds #chronicillness #fighter #reflexsyncope #aquagenicurticaria #waterallergy #gastroparesis #lowbloodsugar #tachycardia #potsiestrong #keepfighting #hypoglycemia #hypos #diabetes #mcas #mastcellactivationsyndrome
I'm sick. I'm tired. I'm frustrated. I'm overwhelmed. I MISS MY OLD LIFE. And I don't know what the fUCK.. TO DO WITH MYSELF... . plshelp . It's so hard to come to terms with accepting all that I have lost and knowing it won't ever come back or be the same. I miss hiking, vacations, dancing.. But even more I miss being able to get out of bed in the morning without 20+ symptoms and immediately feeling worried of what might come with the day. I miss knowing that my body will willingly accept food any time I'm hungry, instead of having to force down vanilla flavored feeding tube formula, and throwing it up more often than not. I miss eating more than baked carrots and potatoes, zucchini and basic soups. I'm so tired of yogurt and toast. I miss wearing regular jeans without pain and bruising from the buttons and seams. Wearing more than leggings, sweatpants and a sweatshirt. . I miss being able to count on my body. . But now I know, I am strong, regardless of my body. Not the kind of strong that helps you rock climb to the top of the upside down wall like I used to,, I used to feel so proud and accomplished of myself and my body.. But the kind of strong who can do her own IVs at home twice a week. The kind of strong who gets up and cooks even though my entire body is shaking. The kind of strong who showers, even though my skin burns and I have prefainting symptoms. The kind of strong who doesnt give up when the doctors have never heard of my conditions. The kind of strong who is ready this time, when the doctors want to check on and possibly diagnose new things. The kind of strong who eats potatoes and yogurt and toast even though I don't want to. The kind of strong who drinks feeding tube formula knowing even though I won't keep it down, it's what I have to do. The kind of strong who wants to live.. who will live.. regardless of my fucking chronically ill body. I am Chronically Healing. ( IG _chronicallyhealing ) . . . #mastcellactivationdisorder #mastcellactivationsyndrome   #mcad #mcas #ehlersdanlossyndrome #eds #heds #hypermobility #stretchyjoints #swelling #inflammation #collagendefect #gastroparesis #tachycardia #posturalorthostatictachycardiasyndrome #pots
i.fucking.hate.shower.days. What do you do to making showering easier? It gives me needles in my feet and up my legs. My skin burns. Even after I've found a soap my skin likes, some weeks my face will react and burn during my shower and for hours after. I'm almost two years shampoo free (yay! Best decision I ever made for my hair) But I just don't know what to do anymore. I can't realistically avoid showering... . . . #mastcellactivationdisorder #mastcellactivationsyndrome   #mcad #mcas #ehlersdanlossyndrome #eds #heds #hypermobility #stretchyjoints #swelling #inflammation #collagendefect #gastroparesis #tachycardia #posturalorthostatictachycardiasyndrome #pots #syncope #pain #chronicpain #chronicfatigue #zebrastrong #edssurvivor #hydrationhelps !
Sometimes putting on your robe and letting the dogs out is a huge accomplishment💪🏻 . Moving is so miserable🤧 . . but it’s much more comfortable with my new Mom-made socks. She sat down on the couch and, without a pattern, made her first pair in many years.. it was so cool to watch! . The velvet is super soft and the knit’s a little larger, which feels great to walk on. That also lets a little more air through, so they won’t be hot or sweaty. . . I know it’s cheesy to say, ‘It’s the little things’ but it totally is. . . They aren’t flawless or identical, but they’re perfect. . . And it’s nice to be comforted when you’re not feeling well, even by sock proxy.💜💖
Perfect vision but still have a eye condition that they say is all in my head. Even though my family see me suffer through it- ERs have seen it’s real- my cars that I have crash know it’s the real deal. But ophthalmologist say it’s all in my head and there is nothing they can do. F U 🤬🖕🏼 . . #chronicillness #invisibledisability #disability #disabled #pots #awareness #raredisease #chronicfatigue #zebrastrong #chronicpain #disabilityawareness #mayoclinic #panicattacks #superventriculartachycardia #svt #Neurocardiogenicsyncope #ncs #narcolepsy #cysticfibrosis #cf #lymesdisease #chronicillnesswarrior #spoonie #eds #servicedog #servicedoghandler #mastcellactivationsyndrome #mcas #disorders #rarediseases
Head and Neck MRA (Angiogram) done. It will never get easier to go inside that tube. My anxiety was through the roof. I fidget a lot, so to be still there it means to tense my body. There is pain in my neck, and body now is in a bad flare-up. I can feel a migraine is in my horizon. But is done, thanks to God. Now we just have to wait for the results, praying for no complications. #dysautonomia #pots #autonomicdysfunction #posturalorthostatictachycardiasyndrome #EDS #ehlersdanlossyndrome #hEDS #hypermobility #mastcellactivationsyndrome #mcas #ibs #migraines #vestibularmigraines #intractablemigraine #chronicmigraine #chronicfatiguesyndrome #cfs #anxiety #spoonie #chronicillness #invisibleillness #chronicwarriors #mri #angiogram
I have been SO on another planet for the past month. Sorry for being so boring...but not sorry. Because I've been busy finding and making a new home. Let me tell you, I am useless without one. Without that anchor, that haven, that wellspring, I just drift. But after several attempts, I finally have a place where I have a real shot at good health. I hope to stay a very long time. Here's a sneak peek at the new digs. Now to build build build my life again - and maybe even get back to posting stuff. * #mastcellactivationdisorder #mastcellactivationsyndrome #mastcellactivation #mcas #mcad #chronicillness #freshstart #sograteful
Took this photo a few days ago. The colors are perfect. But my lense isn’t great for that far away and it’s not a great image. ..... BUT, I thought it was still beautiful. Most see this type of image as a sign from god or similar. That’s not me. But what I do think it makes me rethink my day and how beautiful the world is even if it surrounds some really bad things. The earth... the world amazes me. . . #chronicillness #invisibledisability #disability #disabled #pots #awareness #raredisease #chronicfatigue #zebrastrong #chronicpain #disabilityawareness #mayoclinic #panicattacks #superventriculartachycardia #svt #Neurocardiogenicsyncope #ncs #narcolepsy #cysticfibrosis #cf #lymesdisease #chronicillnesswarrior #spoonie #eds #servicedog #servicedoghandler #mastcellactivationsyndrome #mcas #disorders #rarediseases
Lets talk food 🍍🥑 This is todays food haul. I try to shop and prep on the same day to get it all done but prepping is the key to making sure we eat well all week. Now im not one that can cook one meal at the start of the week and eat it all week 🤢 but i also dont often have the energy/ability to cook dinner every night. So, after my grocery shop pretty much all fruit and veg gets soaked in cold water and vinegar. Once thats done i start cutting all the fruit and veg for dinner and lunches. Majority of my vegetables are cut ready to dump in the oven or pan at dinner time (this makes dinner husband proof). Vegie sticks and salad items are washed and cut ready to grab and go for lunch. Tomorrow i will make a sweet snack (probably caramel slice again because im obsessed). 🍫 • • • #eds #ehlersdanlossyndrome #pots #posturalorthostatictachycardiasyndrome   #zebrastrong #sicktofit #spoonie #mcas #mastcellactivationsyndrome #spinalinjury #invisibleillness #chronicillness #mentalillness #mentalhealth #mentalhealthawareness #ptsd #depression #anxiety #mealprep #fuel #vegan #foodhacks #healthyfood
For a fun new twist, now I'm reacting to TENS unit electrode pads. It's way more vivid in person, but I have red squares along my right shoulder blade. At least they aren't itchy...? #whatnext #tensunit #tensionheadache #chronicpain #ehlersdanlos #mastcellactivationsyndrome #allergictolife #mcas
"oh my darling, it's true, beautiful things have dents and scratches too" •• Health updates hurt my heart right now. They've hurt since I've gotten sick... Why? I've never, not once, been able to say I'm doing even a little better. And today is the same. •• Something that most people don't know is I'm bedridden at the moment, unless I have an appointment I'm in bed all the time. I can't walk, I rely on my wheelchair completely. This isn't new, but it's worse than before. The few steps I could occasionally take a month ago aren't very safe for me to take anymore. And the hardest part? We don't know why. I'm still undiagnosed in some areas. My illness has taken away my hobbies, many of my friends, my ability to perform or study, even my ability to walk. And my body continues to exhibit new symptoms without explanation. •• My hematologist is wonderful, but he's a hematologist. Not all the specialists in the world all rolled into one. And so we wait. We wait for the three big appointments I have scheduled, we wait for the other referrals to turn into dates on the calendar. We wait for the tests my doctors want to run, we wait for my body to respond to some treatment, any treatment. But nothing has been able to ease my symptoms, and that's so difficult. I never ever leave God's hands, even though I'm in so much pain, but that doesn't mean it stops hurting. I'm really discouraged. But I'll keep fighting. It's true, beautiful things have dents and scratches too...
Use the wheelchair. Use it so you can do more. So you can do a lil hike later. So you can save energy and avoid a crash. So you can go to work on Monday. So you can have a fun trip in the land of giants at 7,000ft. 🌲 . . . . [Image description: 1. A selfie of Melanie in a wheelchair and her sister pushing her. Trees are in the background. 2. Looking up at a grove of sequoias. 3. A selfie of Melanie's sister, her sister's boyfriend, her friend, and her in front of a fallen tree they walked through. 4. A view of the canyon with mountains in the background and shrubs and trees in the foreground.] . #chronicillness #mastcellactivationsyndrome #mcas #posturalorthostatictachycardiasyndrome #pots #chronicfatiguesyndrome #cfs #myalgicencephalomyelitis #me #mecfs #cfsme #dsyautonomia #invisibleillness #chronicinvisibleillness #invisiblechronicillness #compressionstockings #electrolytes #sickpeopledoingthings #ambulatorywheelchairusersexist #ambulatorywheelchairuser #parttimewheelchairuser
Do you have any *advice* for navigating romantic relationships while living with chronic MCAS? #patientpoll #relationshiptips #mcas #mastcellactivationsyndrome
“In a world where you can be anything, be kind.” ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ I think kindness is something this world needs much more of. It’s one of the things I have always valued in my dog. He is kind with children, other dogs, other animals, and of course, me ❤️ I can only hope to lead by the example my dog has set. Throwback to our trip with the amazing @a.grimm.fairytail ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ #servicedog #lupus #epilepsy #ehlersdanlossyndrome #mastcellactivationsyndrome #dysautonomia #POTS #connectivetissuedisease #gsdsofinstagram #germanshepherdsofinstagram #workingdog #dragonthegsd #germanshepherddog #dogsonadventures #thegermanshepherdworld #fitdogsofinsta #GSD_feature #gsdloverss #workinglinegsd #forevergermansheps #dogphotography #instagsd #gsdlife #dogstagram #gsdlove #gsdstagram #gsdunited
Muscle upkeep is important to keeping me healthy but as I get ready to start Round 2 of my new favorite program, I have to remember to not push too hard. I hurt myself in week 1 last time because I thought I should be able to do more. I thought I should be stronger - in reality, I live with #chronicpain and exercise needs to be part of my life. It helps decrease pain, it helps support my joints. Knowing how much and when to slow down is something that I'm still learning, something that I'm trying to share with others that live in pain. I will continue to share my wins and struggles with all who wish to follow along.
Skin-saving, back-loosening bath mix🙏🏻😇 . ✨1/4 cup melted coconut oil . ✨1/4 cup sunflower oil . ✨1/4 cup oat powder . ✨10 drops ginger eo . . ✨10 drops clove eo . ✨15 drops orange eo . . I feel better already🧖🏻‍♀️
Day 6 // 30 day challenge • Q: If you could have told yourself something when you first remember these symptoms arising, what would you have said? A: "Believe in yourself, no matter what" Ask any person with an illness that's difficult to diagnose and they will all tell you that the self doubt you experience is worse than any amount of pain. We have all had at least one point in our lives where we began to believe that it was all in our head. If youre at that point now, i want you to know that what youre feeling is real! Keep fighting for that diagnosis. So many doctors told me that even if i had EDS, a diagnosis wont change anything because theres no treatment for the condition. Agreed, but at least now i know that im not crazy, and thats the best treatment i can ask for 🦓 • • • #eds #ehlersdanlossyndrome #pots #posturalorthostatictachycardiasyndrome   #zebrastrong #sicktofit #spoonie #mcas #mastcellactivationsyndrome #spinalinjury #invisibleillness #chronicillness #chronicpain #mentalillness #mentalhealth #mentalhealthawareness #ptsd #depression #anxiety #believe #advice #strength #30daychallenge #day6
Just wanted to take a second to give a shout out to my parents. I am extremely lucky to have parents that have supported me wholeheartedly in my journey with chronic illness. When I made the decision to move back home my parents dropped everything to move me and all my stuff back from Cal Poly. They’ve sat with me on the bathroom floor, taken me to doctor appointments, stayed with me in the hospital, gone out of their way to get me anything/everything I could need. They’ve advocated for me, paid my medical bills, and have stood by my side even when every doctor I saw questioned me. Life with chronic illness isn’t easy and my parents strive to make everyday easier, especially the bad days. I realize how incredibly fortunate I am to have lucked out with these 2 and realize so many people in this community don’t have the same situation as I do which breaks my heart. For anyone out there who doesn’t have the best family life and is trying to manage chronic illness: you are worthy and loved and deserving of support. #Spoonie #ChronicIllness #InvisibleIllness #AutoImmune #Warrior #AntiPhospholipidSyndrome #UndifferentiatedConnectiveTissueDisease #GERD #POTS #OrthostaticHypotension #IST #MastCellActivationSyndrome #Sjorgens #Raynauds #Potsie #Dysautonomia #Sick #DisabilityAwareness #StayStrong #SpoonieWarrior #SpoonieCommunity #SpooniesUnite #ButYouDontLookSick #Awareness #RareDisease #Advocate #LifeWithChronicIllness
Cooked some easy meals today to help conserve #spoons during the week. During the week, the majority of my energy is used to go to work and kill it at my job! So we like to make a few big meals on Sunday to help make the rest of the week easier. [saved to my highlights!] Check out my stories to see my instantpot butternut squash soup and pot roast (Matt's favorite!). Resting up for the week ahead! #careerwithchronicillness #chronicallyill #chronicillness #MCAS #mastcellactivationsyndrome #mastcellactivationdisorder #anaphylacticshock #POTS #posturalorthostatictachycardiasyndrome #dysautonomia #gp #delayedgastricemptying #sjogrenssyndrome #sjogrens #autoimmunedisease #chronicinflammation #cromolyn #mestinon #propranolol #midodrine #methotrexate #MTX #spoons #spoonie #chargies
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