38,300 posts

YOUR BODY IS PERFECT!!! BECAUSE GOD MADE YOU EXACTLY THE WAY HE WANTED TO MAKE YOU!!! You may not feel that way right now, heck I don’t feel that way right now, but you look exactly like what you are supposed to be in this very moment. God doesn’t make mistakes. You are perfect in His eyes and mine! I love you all so much and I hope that what you see yourselves as are nothing compared to how the rest of the world sees you! Get out of your head, and open your eyes to the beautiful you that YOU are! With all my heart 💞 #Invisibleillness #singing #LowerCranioCervical /ThoracicInstability #ChronicVertigo #ChronicMigraines #GIdismotility #MCAD #smile #love #happiness #yourebeautiful #iloveyou #everyoneIsSpecial #sing #singing #music #edits #strength #POTS #Dysautonomia #EhlersDanlos3 #CervicalInstability #SpinalFusion #NervePain #MusclesSpasms #chronicIllness #Potsie #Zebras #Spoonies #Unicorns #WeAreNotOkay
NEW HEAT ALERT 🔥🚨: “STEEZ” - @supaflowa Produced by: @kal.the.guitarist Mixed by: @sabergenesis coming SOON! 📷: @blackninjaturtles
Today on zebrapit.com we're talking about the surprising connection spoonies may have to mast cell activation disorders and hereditary alpha tryptasemia. Is it possible all spoonies have a MCAD like MCAS ? Certainly seems to be the preliminary indication of several studies released recently. Find out more on the home page of zebrapit.com #spoonie #ME #Mecfs #CFS #fibromyalgia #hEDS #EDS #ehlersdanlossyndrome #ehlersdanlosawareness #IBS #interstitialcystitis #mcs #multiplechemicalsensitivity #POTS #POTSsyndrome #chargie #hereditaryalphatryptasemia #MCAD #MCAS
Did some training at Lowe’s to help us ease into training again! We kinda took a week off from PA training after a week of extreme PA training. Quincy was definitely off her game, but was generally well mannered. She mainly just got distracted by people cooing at her and she didn’t seem to have her listening ears on. So we took it slow and just worked on basics and focus work! We also took a peek at the Halloween decorations and Quincy couldn’t care less 👏🏻 I was also happy about how well our set up is working, @rugersropes traffic leashes are the perfect length for when I want more control. I also love how our @caninecradle cape can hold all the things, especially my keys which get lost if I put them in my bag.
Is it fall yet? 🎃
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
Back at my second home today🙄 Rheumatology appointment with Dr Kazkaz who’s been so supportive throughout my EDS journey. Nothing much has changed apart from waiting for a referral to a rehab, and although her clinic is usually diagnostic then discharge, I’m fortunately being kept on👍🏼
It’s finally getting to be fall(ish) again and I couldn’t wait soooo we are back to our full gear setup on days that we are inside most of the day. I have so many amazing patches and a patch cape from @patchwork_and_paws that I love, but since we got it in late May we haven’t been able to use it much at all! I have been thinking about either doing photos/a video/a live with all the gear we have and why we use what we use, so we will see if I have time or energy to do that here soon! #servicedogintraining #sdit #medicalalertdog #pots #mcad #hypermobility #gastroparisis #psychiatricservicedog #depression #anxiety #ocd #ptsdservicedog #ptsd #suicidesurvivor #tasktrained #dogtraining #dog #disabled #dogtraining #blacklab #labrador #labradorgermanshepard #workingdog #dog #puppy #cutedog #balencedtraining #servicedoggear #servicedogtask #assistancedog #ehlersdanlossyndrome
Earlier we had a preview for this thursday's(Sept 20) "The Extra Extra Ordinary" Curated by: Joselina Cruz and Ester Lu, this exhibition will include works by artists Tromarama, Chou Yu-Cheng and Gary Ross Pastrana #MCAD #TheExtraExtraOrdinary #ContemporatyArts #arts #artists #museum
On tap this morning. Daily saline and @katefarms Core Essentials Peptide 1.5 rocket fuel. (Ft. @centrecollege in the background). Had to make sure I got both running early so I can get in the fluids I need, and as much of the rocket fuel as I can get before I have to unhook a couple of hours before my appointment for my GJ button exchange. We used to just wait until the appointment was over to start feeds for the day, but now that Rog is back working and we have to go after school lets out, that’s obviously not ideal or feasible if I want to stay coherent (hey there, hypoglycemia) while we’re at the hospital. – Last Tuesday I had the same appointment scheduled with interventional radiology, yet their time did not match the time we had written down, so I double checked everything for today by making calls yesterday, so prayerfully all will go well. I don’t fancy the idea of blacking out from sitting upright, and having to lie across several waiting area chairs again (looking at you, POTS). But I’m thankful for the access to lifesaving/life-sustaining medical care, even when things don’t go exactly according to the original schedule. – How is YOUR morning? What do YOU have planned for today? (And yes, staying in bed and resting counts as a plan because sometimes that’s what’s needed)😊💛
🗄 Pensar nos itens que irão compôr a recepção de um hospital, consultório médico, laboratórios e clinicas é extremamente importante. O ambiente deve trazer bem-estar e conforto para os pacientes, com o objetivo de tirar a tensão e o nervosismo que é comum nesse espaço. _ 🔵 Essa sensação de acolhimento é adquirida, em parte, com a escolha dos móveis que serão instalados na recepção. Além disso, a qualidade dos itens transmite a ideia de profissionalismo e passa uma boa impressão. _ 👉 Entre os materiais indispensáveis para o ambiente estão: • Balcão de atendimento; • Cadeira operacional; • Cadeira de diálogo; • Longarinas; • Poltronas; • Sofás; • Armários para recepção. _ 🛋 Também existem ideias que podem melhorar ainda mais o espaço, como sofá de recepção, longarina e gaveteiros. _ ✔ A MCAD é uma empresa especializada em mobiliário completo para escritório e tem ampla experiência em recepção na área da saúde. Se interessou pelo assunto? Entre em contato conosco. _ #MCad #MCadoffices #design #moveis #recepcao #saude #moveispararecepcao #moveisparaconsultoriomedico #moveisparahospital
My go to snack! I love @siggisdairy. Finding safe snacks with #mcas us like finding gold lol
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
Finally, finally back up to cardio tolerance of pre sickness levels. I walked away from the elliptical bright red and splotchy, like someone about to pass the eff out from heat stroke, but I did it. 6+ miles in 30 minutes. Followed it by a walk in the heat outside at the park, up and down the hill, only because a tolerable amount of wind was blowing and the sun was low in the sky. (I am heat intolerant. Makes my heart rate skyrocket.) I spent 98% of my day today just laying in bed with the cat and reading a book, but I'm just thrilled to get back to pre illness cardio tolerance for the most part. It was impossible until now, and I've tried hard. #POTS #EDS #MCAD #PosturalOrthostaticTachycardiaSyndrome #hyperPOTS #EhlersDanlosSyndrome #MastCellActivationDisorder #Arthritis #cardioconditioning #hyperadrenagenic #InvisibleIllness
•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
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.
Only 2 wks in and shes already killing it!! So proud of this multi-talented chica! Can't wait to see what this girl is really capable of! She has found her footing. This took about 17 frames to create movement. #MCAD #Animation #TimBurton #Pixar
What if you woke up still in your nightmare? ⛵️🦑🌊 Took advantage of the sunshine this morning to document a piece for class . . . . . . . . . #illustration #artistsoninstagram #mnartist #gouache #gouachepainting #illustrator #mcad #makemcad #illustrationartists #traditionalart #artistsofinstagram #artwork #watercolorpainting #watercolor
My new favorite thing in the universe — allergen free chocolate from @nowheychocolate ❤️👍👏🙌 #mcad #mcas #foodallergies #allergyfreefoods #gfdf #mastcelldisease
•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
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
Little health update I’ve hit another wall with insurance + doctors so treatments have been at sort of a standstill. The cardiologist/autonomic specialist I saw a few weeks ago is out of network, and although insurance authorized me to see him, they aren’t accepting his treatment plan and prescriptions. So I haven’t been able to start the two medications and infusions as he prescribes. I’m feeling frustrated because my insurance payed for me to see him, but won’t pay for the treatment he states are medically necessary? For now, I’m holding on and fighting insurance until everything gets approved or we find another treatment plan • • • • ID: a picture of an IV pole with two bags hanging on the top. There is a large vitals monitor on the top left and there is a brown/orange stripped curtain behind it.
Mesas Rebatíveis O produto mais moderno em mecanismos de rebatimento. Acionamento único,leve e prático. Ideal para ambientes que precisam de espaço e versatilidade. Diversas aplicações. Conheça: www.mcadoffices.com.br #mcad #mcadoffices #mesas #mesasrebativeis #reunião #moveis #coworking
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 !
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
Tá chegando o nosso segundo Encontrão de Adolescentes de 2019, e convidamos todos que moram na Cremação, Condor, Guamá, Jurunas e Terra Firme a estar conosco neste sábado (22/09) a partir das 16 hrs na Praça Dalcidio Jurandir. Teremos varios convidados e uma programação muito especial pra você adolescente, venha e traga seu amigo! Aguardamos vocês 👑💕 . O "Encontrão de Adolescentes" é um projeto idealizado pela Missão com Adolescentes, com o intuito de reunir membros de outras igrejas para promover comunhão e levar o evangelho aqueles que ainda não conhecem à Cristo. . #deus #jesus #evangelismo #ide #dança #teatro #louvores #pregadores #mcad #adolescentes #belemdopara #assembleiadedeus #adbelem #cremação #terrafirme #guamá #jurunas #condor #encontrão
Made a poster for my school. #madeatmcad #mcad #digital
Details from the second iteration of studies for DAS PROBLEM KV, continuing our charrette started in week one. GRD 5010 01 SP18 @mcadedu typonauten once again impress with their thoughtful hand-rendered reflections. #typografika #geotypografika #klassebrandt #mcad #mcadgraphicdesign #politikverdrossenheit @mcadgraphicdesign
[continued from last post] 2) So this one is more really crazy. So since everything got bad for me, one thing that has been good is that God has put so many amazing people in my life. I never had a lot of friends or anything, for years basically the only person I had was my best friend. But since everything got bad, God has been throwing so many beautiful souls into my life just when I need them. On Friday night, at the football game I was talking to someone who is probably one of these people. It was my best friend's other main friend who I have been talking to recently. She's one of the few people that I know in real life who knows a lot about what's been going on in my life. One day at a church group party I just stood there and randomly tools her everything that's happened recently, which is really odd for me to do. Since then we'll talk about all my health issues and she'll ask me questions about it. She's really easy to talk to about it for some reason. She's also the only one that my best friend initially told when I got so bad that I had to have school last year. She also has a best friends with chronic illnesses, so she gets it. So on Friday she asked me if that's was a specific day that I got sick on. I thought this was a really weird question to ask, but told her that yes, it was January 17, 2017. All the sudden she freaked out and texted her friend with chronic illnesses to confirm the day she got sick, as it had been all of the sudden for her as well. She showed me her phone and it was the same exact day! Actually right around the same time time too. I mean what are the chances? We all started freaking out. So I started talking to her on Saturday after she messaged me because she couldn't believe it either and wanted to hear what happened to me. So we've been talking and it's really nice. There God goes blessing me with more beautiful souls.
Happy Monday (lol) everyone! Within this crazy, messy, scary life there are some really beautiful, perfect moments too. There are moments where for a second everything makes sense, where for a second you feel like this luckiest person in the world, where for a second you can breathe again, where for a second everything feels like it will be okay. It's like all of the sudden God comes down from the heavens and is like 'Hi, I'm still here. Don't worry, I'm still here.' We still may not understand God's plan, but we can see that he has one and find a bit of peace in that. I wanted to share two of these moments that have happened in the last week or so. [It will be in two separate posts so I have enough room.] 1) So the first one happened last Saturday (a little over a week ago). As I mentioned before, I took the ACT for the first official time that day. I didn't think I'd be about to do it because last time I tried to take the SAT I didn't even make it to the testing center. But I did. This time I made it there and through the whole test. That was amazing enough, but later, on my way home from the test with my mom she told me about something amazing. She was driving home from dropping me off at the test and was praying and praying that I would make it through the test, as she had been doing for weeks. She was thinking about how peaceful I had been the night before and thought that my aunt (who was my favorite in the world but who passed away a few years ago) just have been laying with me and that's why I was so okay. All of the sudden this car whipped in of her and the license plate caught her eye. The first two letters on the license plate were "AT" the initials of my aunt. Guys, God is so amazing.
So somehow by the Grace of God we still have power. A transformer blew by the house Friday but our brave lineman were fixing it within 15 mins! Going stir crazy I finally started a few projects. Being in the hospital so much lately and with a major surgery planned in a month, I’m tired of wearing their janky gowns. However I know it’s best to have snaps on the arms and back for IVs and changing, so I basically made my own. I’d like to make 2 more before surgery, but I AM SO PROUD OF MYSELF for how far I come. I couldn’t breathe on my own just two short weeks ago, now here I am. Always remember, you are strong, and you are loved!👗🦓💪🏼 #sewing #snaps #hospitalgown #homemade #hospital #respiratoryfailure #anaphylaxis #spinalfusion #atlantoaxialinstability #craniocervicalinstability #mcad #mastcellactivationdisorder #eds #ehlersdanlossyndrome #pots #posturalorthostatictachycardiasyndrome #dysautonomia #brave #fighter #warrior #spoonie
As some of you know, I have a rare disease called Indolent Systemic Mastocytosis (I call it Masto for short). It's the tip (and most impactful part of a very long list of medical conditions I live with. Masto is a disease that essentially means my immune system thinks normal, everyday things are attacking me, resulting in multiple daily allergic reactions that take a big toll on my body. Most of you are familiar with anaphylactic shock, but there are actually different grades of anaphylaxis, and even with all the meds I take I still go into low grade anaphylaxis a few times a week...on a good week. . In the right around the beginning of summer I started feeling a tiny bit human for the first time since September 2017—I'd been having the worst flare up I'd ever experienced for 9 straight months. It was terrifying. It mainly presented as brain fog, and the first time in my life my intelligence, my ability to communicate, focus, or accomplish even simple goals, was completely inaccessible to me. I just existed, and I was really scared that's just how my life would look like from now on. . I did a really good job hiding just how sick I was from even people closest to me. My #anxiety constantly tells me that if I'm not happy and fun, no one will like me, and society makes me feel like I should look normal even when I feel anything but, and for years that's what I've done. I think that it's time to do something different—to let people see more of what having an invisible but life-altering chronic illness actually looks like, and to let other chronically ill folks know they're not alone. So you're going to see more of what it an invisible illness looks like. So here I am, at 6AM, and I've been up for an hour with heartburn... I think, possibly, from chugging water because I woke up thirsty about 2 hours ago. Can you actually get heartburn from water, who knows, but I seem to. . #Hedonish #invisibleillness #butyoudontlooksick #indolentsystemicmastocytosis #mastocytosis #mcas #mcad #raredisease #chronicillness #autoimmune #sick #illness . #Repost @browneyes.thickthighs (@get_repost ) (Via @janellesilver ! So talented)
My etsy.com shop has sold out for now! Stay tuned for more inventory (and let me know if you prefer circles, hearts, or frames ). I also wanted to let you know that I am donating $5 from each sale to the Lupus Foundation of America, Florida Chapter. I am sorry that was not posted on the original page, but it has been corrected! #spoonie #reikihealing #meditation #sle #mcad Www.bridgingthegaptoheal.com
“Forward” a short film by Dylan Chazin-Bowman (@dcb_dump ) available NOW on our YouTube! Link in bio!!!!!
Commission for @ash_stryker <3 Check out her page! she also makes stellar art!!! . . . . . #mcad #artists #commission #portrait #drawing #painting #artwork #copic #watercolor #guache #acrylic #illustration #doodles #art
"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...
We are back home from Sedona now! We had a blast and enjoyed being out in the slightly cooler weather 👌🏻 we got many compliments on Quincy’s behavior and had tons of relaxation time. Ready for a fun filled and training filled week 💪🏻 This photo was taken on our hike using my DSLR camera instead of my iPhone, can you tell? 🤔 I think it definitely shows off our @rugersropes and @lcpetlooks gear!
Made chocolate chip cookies without the chocolate chips. (Chocolate is a mast cell trigger here.) Ingredients included flour, white and brown sugar, baking soda, coconut milk, salt and olive oil. #lowhistaminecookies #cookies #nochocolate #mcad #mcas
Because gas fumes knock me out #invisableillness #mcad #lymie #vogmask #rockon
Today starts off national wellness week! This holistic approach to health and wellness is one I practice in my own life. Every part of our lives is interconnected- what affects one part will inevitably affect another. 💛 One way I like to take authority back over my life is by focusing on all the areas of wellness I can control. • [Image description: the top half of the image is a seafoam green and the bottom half is white. In the centre of the image is a diagram. Above the diagram it says “September 16-22, 2018 is national wellness week!” in a small, all-capitalized, light brown font. On the top part of the diagram image it says “@strongerthanpots ” in small brown font. The diagram shows 8 different coloured circles that overlap. The top circle is red and says “EMOTIONAL” in a small, black capitalized font. In the same font, in a clockwise direction, the next circle is pink and says “SPIRITUAL”, the next circle is orange and says “INTELLECTUAL”, the next circle is yellow and says “PHYSICAL”, the next green saying “ENVIRONMENTAL”, the next light green saying “FINANCIAL”, the next dark blue saying “OCCUPATIONAL”, the next light blue saying “SOCIAL”, and that one connects with the first red circle that says “EMOTIONAL.” On the bottom right corner of the diagram it says “SAMHSA.GOV” in small brown font. Below the diagram, on the bottom white half of the image, it says “‘REMEMBER THAT WELLNESS IS NOT THE ABSENCE OF ILLNESS OR STRESS. YOU CAN STILL STRIVE FOR WELLNESS EVEN IF YOU ARE EXPERIENCING THESE CHALLENGES IN YOUR LIFE.’ -SAMHSA.GOV” in light brown font.]
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
Second iterations of counterforms from DAS PROBLEM KV. GRD 5010 01 SP18 typonauten came through with lovely new thoughts. #klassebrandt Advanced GD Seminar @mcadedu. More process details soon. #typografika #geotypografika #mcadgraphicdesign #mcad #politikverdrossenheit @mcadgraphicdesign
denial. a healthy coping mechanism... right? 😅 lately i’ve been doing better emotionally (which is awesome!) so i’ve been pretending my physical health is better as well, even though it’s really not. honestly, i’m not doing that great. i’ve been trying to ignore it, push it away, deny its very existence in order to maintain my “activity” level so i don’t get more deconditioned. and you know what? i’m exhausted. forcing myself out the door to improve my mental health & stamina has been taking a toll. the perfect balance between rest and pushing myself is nearly impossible to find. it’s getting to point where i can no longer deny it. i’m crashing harder & more often, which is definitely putting unnecessary physical stress on my body. i’m not sure what my next steps are, but slowing down is absolutely part of it 💕
Ash Higbee’s fantastic Adobe Illustrator self-portrait in Rowan Pope’s 2D Foundations class. #mcad #design #2dfoundations
🚗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
I’m grateful for the tribe I’ve built and the peace of mind that comes with knowing it’s ok to choose who I surround myself with #family #support #pots #ehlersdanlossyndrome #mcad #invisibleillness #type1diabetes #autism #toomanyhashtags #toomanyillnesses
✌🏽pc: @icyviker
Red Cup - The summers ending and I’m playing catch up. I’m trying to have 2-3 projects done in the next few weeks, experimental & not 👀🐉 . . . . .
Hey SABERFAM all 3 volumes of SABER MAG are available for download on ITunes! SABER VOL. ONE is available for free download NOW! Link in our bio!
NEW HEAT ALERT 🚨🔥: @supaflowa aka SABER3 ‘s cover story just dropped her debut project available on all streaming services now!!
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