#mcad

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Reposting one of my old posts on another account that relates to both EDS and headaches! So many things can cause headaches in the general population, but EDSers seem even more susceptible to them. Studies have shown that migraines may show up earlier in people with hypermobility versus the general population. The frequency of migraines is suggested to be larger, and overall symptoms are likely to be more intense (Puledda F, et al. 2015).
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I LIVE for sweet potato fries. The crispiness and sweetness are so satisfying. These babies at @soupnburger rock!
Mosa always knows when I'm low on spoons. I woke up from a lay down to find this helpful Squish taking care of me. 😍🐱 . . #spoonie #spoonielife #chronicillness #EhlersDanlosSyndrome #mcas #mcad #eds #mastcellactivationdisorder #mastcellactivationsyndrome #zebrastrong #catsofig #catsofinstagram #catstagram #mosakitty #selfcare #metime
The reality of chronic illness: healing is not linear. • Reality of chronic illness: sometimes there are no answers. yesterday, I had an appointment with a new specialist. he was so kind, but unfortunately unable to provide any explanations or treatment options. referred me to three new specialists, but cautioned that we might never know the “how” or “what” or “why.” • Reality of chronic illness: needed maximum doses of pain medication to get through the day. started running a fever from exhaustion. small fiber neuropathy flare set my hands and feet on fire, burning, bright red, swollen, shiny. my dad had to carry me into the house because I was in so much pain. • Reality: headache specialist called to schedule appointment. my choices were THE NEXT DAY or wait until November. I’ve had a chronic migraine for 2 years and I’m desperate for relief. so even though my body is beyond exhausted, I chose the next day. • Reality: in order to make the 8:30 am appointment possible, I have to take medications at 3:30 am, start IV fluids at 5:30 am, and leave the house at 7:15 am. no time for sleep. • The reality of chronic illness: it’s an unpredictable journey. you never know what comes next. it sure is a wild ride.
Massages can be a mast cell nightmare, depending on the patient. Here are some tips to reduce reactivity: 1) call ahead and request an odor-free set-up (no candles, no air fresheners, no aromatherapy diffusers, no perfume/cologne, etc) 2) consider bringing your own “safe” lotion, towel, sheets, etc. 3) be up front about the pressure you can tolerate and don’t hesitate to voice adjustments needed as you go 4) prepare in advance with shorter time frame trials - start with 10-15 minutes of self-massage (or convince the significant other!) and work up from there 5) ask if you can start with a shorter session for a reduced rate to see how you do, or consider taking periodic breaks It may also help to investigate the building beforehand if you’re mold sensitive. (Nothing worse than showing up for some “spa” treatment in a water damaged building!) Avoid heating pads/hot stones if heat tends to be a mast cell trigger. Consider focusing on certain areas depending on your goals. Anecdotally, some Lyme doctors claim that a neck massage will facilitate release of bacterial toxins (useful for Lyme testing the following day. perhaps not so useful if your mast cells are already flared). Try to go with people who come recommended by someone you know. Check their reviews online. And when in doubt, don’t hesitate to pre-medicate! Consider lemon water and/or toxin binders and other liver and lymphatic support following the massage. Stay extra hydrated after! That was definitely more than 5 tips! 💆‍♀️ Do you have any suggestions for things that have helped you in the past? #mcas #mcad #mediatorfreemassage #massage #massagetips #chronicillness #chemicalsensitivity
| I do not have enough energy to fully express my gratitude and love for you, but please know it’s more than you would every think possible... Now can you carry me back to bed please 😬🤢🤢😉🤯💚 #butsrsly #nursedaine
=Collars=Student Work=
I totally reacted trying to re-pot these beauties, but it was well worth it to be in my happy place for a bit! I scored the pot on the right at Goodwill 😊💚🌿🌱🌵 . . . . #chronicillness #spoonie #mastcellactivation #mcas #mcad #mastcellactivationdisorder #mastcellactivationsyndrome #spoonieproblems #spoonielife #myhappyplace
I, like many with EDS and other chronic illnesses, deal with headaches. I suffer from migraines, and a constant pressure-like headache, coupled with constant tinnitus. There is not a single moment that I do not have a headache. As of right now, I am not getting any treatment. My doctor believes it has something to do with my Connective Tissue Disorder, but for now just said to avoid coffee, take vitamin B2, and... exercise. Ngl, I cried during that appointment, especially since I was tired of people telling me to exercise when it’s extremely difficult for me to do so. But anyway, headaches, and especially migraines, are no joke. As with a lot of chronic conditions, exercise and vitamins may help with some symptoms, but it’s often not enough, and definitely not a cure. For anyone suffering from headaches and/or migraines, I hope you’re getting the treatment you need, and if not, I pray that you will soon 🙏🏻💜
My darling @ponyothedogo looks a little broken here. Maybe she has #eds too 😂 oh no wait... that would be terrible for her! *runs off to call vet in a panic! #chronicpainwarrior #ishallrise #wheelchairlife#ehlersdanlossyndrome #mcad #bordercollie #ponyothedogo #dogsofinstagram
Today was my deaccess day for my port, but I wasn't planning on this 😂 so we've been working on this noob's jumping. He's done it since day one and we've been working on it ever since. I do not allow my dog's to jump because not only is it annoying, but it isn't safe for me! I constantly have tubing hanging from my chest and have balance issues. I could be knocked over or he could get caught in my tubing. Well, today it finally happened, we were playing fetch and he got excited over a command, jumped, caught my tubing and ripped the needle out of my chest 😭😂 I have a small tear from it and am sore, but thankfully it wasn't too bad. I had to access, flush and lock the port, deaccess, access the other side, and then restart my infusions. Gnar seems quite proud of himself 😂So moral of the story is, don't teach or allow your dog's to jump on you whenever they want! It might be cute for them to get excited to see you, but others may not like it, or it could result in an injury for someone. ••• Check out @cypressavenueworks for awesome paracord and sensory friendly gear! 15% off: CAWFRIENDSANDFAMILY ••• #medicalalertservicedog #servicedog #spoonie #chronicillness #ptsdservicedog #servicedog #servicedogintraining #spoonie #ptsd #invisibleillness #chronicillness #tasktrained #ptsd #ehlersdanlossyndrome #multiplesystematrophy #posturalorthostatictachycardiasyndrome #pots #EDS #pnes #mcad #psoriaticarthropathy #multiplesystematrophy #autismservicedog #neurodivergent #mobilityservicedog #chewyinfluencer #banetheservicedane #cypressavenueworks #cawambassadors #cawsensoryfriendlyteam
my mom dragged me across the state of wisconsin for a week, and this is what i saw
north woods (2/3)
north woods (3/3)
I haven't posted much over the past couple days, because I've been OBSESSED with writing lately. I've been working on my #GhostWriter18 story nonstop, and it's been so much fun! The last few days have also really demonstrated how much progress I've made with my MCAS treatment. I would never have neen able to do this with the amount of fatigue and brain fog I had just a couple months ago. 😀😎✍👻🐱💪 . . #writing #writersofig #writersofinstagram #ghoststory #spoonie #spoonielife #chronicillness #EhlersDanlosSyndrome #mcas #mcad #mastcellactivationsyndrome #eds #zebrastrong #ehlersdanlos #goodvibes #instagood #happiness #positivity #catsofig #catsofinstagram #catstagram
Choosing to be thankful in the midst of another flare. Despite the pain, the mast cell reactions, the nausea, and the vertigo, I’m thankful for all my body allows. I’m thankful my body has been tolerating more foods lately. I’m thankful for treatments that have finally begun my migraines. I am thankful my body allows me to love and celebrate my friends and loved ones. I’m thankful for @_vickrs_ for supporting me when my body allows me to take on Disneyland, but even more thankful for supporting me while I’m stuck in bed flaring. Sometimes it’s hard to be thankful when it feels like your body is fighting against you every step of the way. What are you thankful for today? 🙏🏻 • • • • • #spoonie #spooniestrong #invisableillness #butyoudontlikesick #disabled #disabledandcute #chronicillness #chronicillnesswarrior #mcad #mcas #mastcellactivationdisorder #cfs #fibromyalgia #eds #cleds #ehlersdanlossyndrome #pots #poedssturalorthostatictachycardiasyndrome #disneyland #pixarfest
Today, I received my #beadsofstrength Each one of these beads represents a part of myself, and a great portion of which I keep to myself, namely my chronic illnesses and the struggles that comes with it. Numerous tests, surgery, chronic pain, depression, and so much more. Each bead also represents a victory. It shows that even with all the struggles that comes with a chronic illness, I still pushed through, and I’m still here today, going on #zebrastrong Even if nobody can see what I’m going through, I have these beads as my own visual, to remind me that I am valid, it’s not all in my head, and that I can get through all of this. Thank you, @beadsofstrength for doing this amazing project, helping out tons of spoonies like me 💕
✨I tried using KT tape to keep my left shoulder in place. Damn skin won’t let it stick to me (thanks EDS) I guess I need a new shoulder brace.. but what does that look like? Hmmm, anyone here have a chronically dislocating shoulder? Or maybe know a wizard who could make my body produce collagen the right way?! No?? Okay, I’ll settle for some coffee. Good morning ☕️ • #chronicillness #chronicpain #fibromyalgia #fibro #eds #heds #ehlersdanlossyndrome #ehlersdanlos #hypermobileeds #pots #hypotension #dysautonomia #mcad #mcas #mastcell #mastcellactivationdisorder #spoonie #zebra #zebrastrong
Tailored jacket prototype made by a student in my Advanced Sewing Techniques course.
Today, as a way to bring awareness to migraine disorders, there is a campaign by @shadesformigraine encouraging people to wear sunglasses 😎 all day. So here’s my photo. Full disclosure: I won’t be wearing my shades all day as it may bring on a migraine! The pressure of glasses on my nose and behind my ears can be a trigger, so I hope you will forgive me! But I’ll be wearing them in the sunshine ☀️ today. Hope you are having a migraine-free, low pain day. . #migraine #migraineawareness #migrainerelief #migraines #migrainewarrior #vestibularmigraine #headache #chronicmigraine #chronicheadache #shadesformigraine #fibromyalgia #eds #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #pots #vertigo #mastcellactivationdisorder #interstitialcystitis #mcas #mcad #raynauds #chronicpain #chronicfatigue #chronicillness #invisibleillness #migrainesolidarityday
WE 👏🏼DID 👏🏼IT!!! Through the hospitalizations, fainting spells, a long medical leave, late nights and break downs, Shayna and I GRADUATED! 🎓Managing chronic illness and schoolwork has been the most difficult challenge of my life, and I couldn’t have done it without this girl by my side. 💕Look forward to posts in the future about my college experience and illness, 👀 where I will provide some tips and tricks I’ve learned along the way! Time to spread thaaatt knowledge 🤓 #spreadawareness #pots #sjogrens #syncope #spoonie #dysautonomia #chronicillness #vegan #bekind #mcas #aps #cfs #posturalorthostatictachycardiasyndrome #sjogrenssyndrome #autoimmunedisease #autoimmunediseases #warrior #chronicillnessfighter #csf #cerebralspinalfluidleak #love #fighter #antiphospholipidsyndrome #chronicfatiguesyndrome #mcad #mastcellactivationdisorder #mastcellactivationsyndrome #chronicillnesswarrior
Got to hang out at my alma mater @mcadedu and get headshots taken. I will be in their upcoming viewbook. I remember in high school drooling over the MCAD viewbook and dreaming of the opportunity to attend! It was such a privilege to earn my BFA ten years ago at an incredibly dynamic institution. #mcad #minneapoliscollegeofartanddesign #art #design #classof2008 #retrospective
Made it to Ohio for my doctors appointment! Makki did amazing on the trip despite having to hold her bladder for a while 😬 ran into a few minor access issues when we first got here which sucked because the first one I just had to leave because I did not feel good enough to handle, but the rest I just handed them a law card and it was taken care of.
Last class of the Continuing Education program tonight (Advanced Sewing Techniques)... until next semester 😁
I love these lozenges! Currently I’m on an immunosuppressant drug and my throat is a bit sore so I picked these up today. . . . #zinc #elderberry #naturesway #vitaminc #sambucus #organic #naturalgrocers #immunosuppresant #budesonide #mastcell #mcad #mastcelldisease #mcas #autoimmunewarrior #autoimmunedisease
Wow...I stink at sleeping. 😴😴😬😬 Too much light sleep, not enough REM or Deep sleep. It’s nice having these readings from my FitBit. It’s funny I still would not call myself a “light sleeper”. I need two-three alarm clocks to wake me up, I sleep through loud thunderstorms, etc. Usually nothing wakes me up except I do get episodes of sleep paralysis sometimes. Now those are freaky! Does anyone else find this? #crohnsdisease #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #pots #mastcellactivationdisorder #mcad #sleepcycle #sleepdisorder #sleepparalysis #spoonielife #spoonie #spoonieproblems
✨“Hey momma, you okay?” Not really, but I’m trying. Recovering from this car accident has been a bitch, excuse my language, but fuuuuuuuu... I saw my doctor today who put me on some new meds, upped dosages of other’s, and it’s just like HOW MANY MEDS UNTIL I FEEL BETTER. In reality, I know that is probably unrealistic but hopefully this pain stops flaring and these dislocations of ribs and my left shoulder just make me want to lay in bed and disappear. Which I am. That’s why Miss Lulu is worried. I think she needs a nurses outfit, what do you think? Speaking of nurses, I will be getting in home nurses to check up on me as well as more caregiving hours... So those are positive things, right? • @littleladylulu #chronicillness #chronicpain #raredisease #eds #heds #ehlersdanlossyndrome #ehlersdanlos #hypermobileeds #poppinjoints #ouchmybody #pots #dysautonomia #hypotension #mcas #mcad #mastcell #mastcellactivationdisorder #fibro #fibromyalgia #spoonie #zebra #zebrastrong
Stopped by my alma mater, MCAD, and happy to get a spur of the moment tour from Cindy Theis. I’ve visited last few years but completely missed that they’ve added a mural and sculpture garden on south end of campus. Lots going on there! #mcad #minneapoliscollegeofartanddesign #mnarts #minneapolisarts
Its that time again! A new episode of #DirtyLaundry is up over on #linewebtoons Go check out the link in my profile. . . . #art #artwork #comic #comicart #webtoon #webcomic #digitalart #naga #clipstudiopaint #originalcharacter #mcad #mcadalum
❤ Love letter to @jilzcrackerz * I am currently in the process of procuring "clean" items (delicious or practical) to fill swag bags for the 2nd annual Stanford Symposium, sponsored by @openmedf You can check out the details here:  https://www.omf.ngo/community-symposium-2/ In the old days, as a board member for several big organizations, I sought donations for galas and fundraisers, beating down doors looking for support year after year. I have come to realize, it takes a certain kind of glutton for punishment to do that. I also know what it's like to be on the receiving end of those requests. As a business owner for many years, I gave as generously as I could, but it sometimes felt like an obligation when the requests would roll in non-stop. I wasn't always enthusiastic. And THAT is why @jilzcrackerz is such a standout company to me. Not only did they say yes to my request for 100 mini packs of their crackers, they did so with gusto and enthusiasm. They even sent me some free coupons for my own personal use (see my IG stories highlight). Jilz, THANK YOU for the scrumptious crackers you make for people like me who need to keep it clean! But even more - thanks for being such a class act, you are an example for the rest of us. That includes me. The ME/CFS patient community has a tough gig going, so we appreciate your support more than you could know!! 💕 Fellow IG peeps if you have connections to other "clean" food and product producers, I would love your help! 👊 If you're interested in learning more about ME/CFS, please watch Sundance Award winning film @unrestfilm , it's on Netflix! 👍 * * 📷 pretty pic by @themindfulchef
New podcast up!! Give it a listen at http://aschillingforyourthoughts.com or iTunes and all that. I am joined by two lovely LGBTQ+ teens to discuss being queer in high school! #casuallysuffering #chronicillness #dysautonomia #pots #posturalorthostatictachycardiasyndrome #ehlersdanlossyndrome #eds #mastcellactivationdisorder #mcad #blondegoth #witchesofinstagram #girlswithpiercings #podcast #aschillingforyourthoughts #podcaster #lgbtq #lgbtqyouth
It’s almost time! Will you help us move? With @amazonsmile You will be Supporting our New Center & Exhibition Space when you shop http://bit.ly/smileMCAD
Bummed that I failed this because it was delicious. Curried sweet potato and cashew soup with kale. 😖#cornallergy #mastcell #micromeals #vegan #soup #allergictoeverything #mcas #mcad #moonfacedmug #everythingfree
By The Riverbed - Continued from a good day, these paths down by the river are very underrated 💧☀️ . . . . .
Bowsprit - The end of this wall reminds me of old sailing ships ⛵️ . . . . . .
Between Paths - From a warm summers day full of adventures ☀️ . . . . .
On the Way Out - I found 10 film strips in my archives that I never finished editing, this was the day I got back from Los Angelos last summer . . . . .
Pillars - Trying to post the rest of my misc photos before I drop my new work . . . . . .
Learning to Ollie - I held two of Andy Warhol’s Brillo boxes on Wednesday, shit was incredible . . . . . .
Better Days - I’m about two months away from being 20 and I’m just hoping there’s no snow in June ☀️ . . . . . .
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