#eds

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My first go at hand dying wool. Grey Skies and minty fresh. I can't wait to make these up. #chronicillnesswarrior #tofts #eds #toftstudio #toftstagram
🤔Yesterday's visit to a new physical therapist in Billings put a lot of things into perspective for me. I had originally planned to post a piece on sex and chronic pain today. But I have some things I need to get off my chest.😎 . ❤️Although the beginning of my blog is a humble one, I'm unbelievably appreciative of anyone and everyone who has read it or shared it. My voice may be small, but it is passionate.♥️ . 🎉I think it's important to address how we support one another within and outside of our community. It seems as though those who are open about their struggles are often labeled as whiners, while those who remain silent seem to solidify their place as the strong friend.😭 . 🎈I'm hopeful that this piece I'm working on will come out as its intended - with love and compassion.💋 . #chronicpain #raredisease #aspiegirl #autism #zebrastrong #raretogether #dystonia #chronicfatigue #tendonitis #EDS #mcad #anxiety #aspiepride #mmj #montanalife #mantana #bigsky #billings #bloggerlife #blogger #holistichealth #cannabiscomunity #integrativemedicine #relax #mindfulness #meditation #tarotreaders #supporteachother #spoonies
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This dog never ceases to amaze me. We went to a retreat at our church this weekend, and I couldn't be more proud. I was worried about him having to be working for so long, sleeping with a large group of people, and not knowing the schedule. But he (and the people on the retreat) surprised me exponentially. They read and abided by the note I wrote a few posts back about service dog etiquette. SJ was so well-behaved, did not have a single slip-up (not even exaggerating), alerted and tasked, and everyone loved him. We even had a foot-washing ceremony (which is something I've never thought I would ever have to train for!) and he just watched. Because of how well-behaved and alert he was, I was able to truly enjoy my retreat and the wonderful women I met over the weekend! #sheltie #servicedog #crohns #eds #pots #migraine #retreat #church #crhp #churchoftheascension
Hemma och landat i sängen efter ett roligt rullstolsteknikpass med rullegruppen och eds lokalförening♿🦓 Två föreningar med underbara människor som ger mig så mycket! 🤗 Tack för att ni finns! #rullstol #panthera #u3ligth #rullstolsteknik #eds #edsriksförbund #fuckeds
So as much as I love my family’s dog Foxy (who we for now steal every month for one week) I am happy to report that we have been given an official application for a service dog! We submitted earlier this weekend (and had no expectation of hearing back from CCI anytime soon) but got the news that we are moving to the second phase! We will be filling out our official applications this week and sending them back! God is so good and @jcnolin11 and are so excited to start this journey. As much as I love and adore foxy, this is definitely the right step for Jared and I. Just knowing within 1-2 years I will (hopefully) have a service dog and be able to be more independent is so exciting 🙌🏻 🐾 also swipe right to see one of the outtakes when taking this picture of foxy and I 😂 #caninecompanionsforindependence #servicedog #application #soexcited 📸: @nursecoachdeb #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
I burned my face recently. Tried waxing and I don't actually think it's a burn. The skin just failed and delaminated, a side effect of my connective tissue disorder. I have to work twice as hard now to do my foundation, but the practice is nice. Also, the temp was 120 to 110 so there's no way it was a -burn-. Lol #healing #skin #burn #waxing #beauty #is #pain #sometimes #eds #ehlersdanlossyndrome #zebra #trans #former
The #redtiechallenge has stolen the sparkle pager (this back anyone?!) from @greysabc in hopes that they will help us raise awareness for bleeding disorders like the one I face everyday! Don’t forget to catch the season 15 premier this Thursday! 🙋‍♀️ if you are going to watch the premier! - - - - - #vonwillebrandstype3 #vonwillebrands #hemophilia #bleedingdisorders #brave #bleederproblems #haemophilia #haemopiliaproblems #hemomomlife #bleeding #chronicillness #hemophiliaproblems #hemolife #chronicillnessproblems #infusions #ehlersdanlossyndrome #bruised #medical #chronicloveclub #bleeding #medicallife #hospital #eds #nurses #infuse #bleeding #bruisednotbroken #bruisedandbrave #medical #typethreegirl
Waiting for my train home. It’s a long day travelling with work. Can tell that pain is about to soar and blood sugar drop. 😢At least my make up has stayed put 😆And it’s another 4 hours till I get home. I wonder if I can manage some mindfulness on a rush hour train to help with the pain. #hypermobility #ehlersdanlossyndrome #chronicpain #chronicfatigue #chronicillness #invisibleillness #disability #eds #awareness #spoonie #zebra
Warm now or? Definitely 🏋️‍♀️🏋️‍♀️🏋️‍♀️#fightingspirit #fitness #eds #forlife #zebrapower #warrioratheart #hardtimes #zebrawarrior #zebrastrong
Hey friends, it seems like there is an awareness week for everything, and this week it’s POTS*. If someone asks how I’m doing re fainting, my fave answer is, ‘Well it’s a bit up and down’. 😬 POTS is the cause of my fainting as well as some other symptoms. ‘This is caused by a malfunction of the autonomic nervous system. POTS is a form of orthostatic intolerance that is associated with the presence of excessive tachycardia and many other symptoms upon standing.’ -(Link below) -I’ll put some links in the comments below if you would like some more info. Also, I understand many are not into ‘awareness’, and I would like to clarify that I realise neither POTS nor EDs nor PTSD nor any other diagnosis defines who I am. We all have our ‘stuff’. I don’t think more awareness or understanding for all of us can be a bad thing. (-: *Postural orthostatic tachycardia syndrome —(My POTS is connected to my other condition, Ehlers Danlos) (My hair isn’t orange but now I’ve seen it with this filter on, I’m tempted!)🍊
Freeedommmm! I’m at my parents house now, discharged from my hospital prison & recuperating at the parentials house. . 🤕 I am feeling quite poorly & sad & thinking about how long it’s gonna be before I’m back to myself AGAIN. But I’m kinda used to this now. Like I said in my previous post... I’ve had to be pretty patient in life. 🤷🏼‍♀️ Throwback photo to a little while ago. Sometimes I really wonder if I chose the wrong path in life. I got into fitness 8 years ago & it’s been really challenging with my ailments. But there’s actually no pressure, only that I give myself. I can dip in and out & try to enjoy the times I’m healthier. 💕
📸📸 ______________ #PZ #eds #rapfrancais #photography #shooting
Met up with some friends, more not pictured here, to train around some animatronic and spooky displays. Quincy couldn’t care less. We definitely want to go again to another Spirit store to train soon, since Quincy was having a really off day and could barely focus at all. I think both her and I were just too exhausted from yesterday’s concert and super hangry that we should have taken the day off from training. But, you have to make mistakes to realize what not to do while training.
But what are you going to do then? 🏋️‍♀️🏋️‍♀️🏋️‍♀️#fightingspirit #fitness #eds #forlife #zebrapower #warrioratheart #hardtimes #zebrawarrior #zebrastrong
🔥¡Vamos a celebrar los 15 años de uno de nuestros discos favoritos de todos los tiempos!🔥 ¡INYECTORES / ROMPE CAMINOS este 08 de DIC. Entradas en @joinnus 👉 bit.ly/rompecaminos15 . . . @inyectores @bbs.paranoicos @terrevientobanda @contracorrienteband @dementecomun @losoutsaiders @cecimonstervsdonka #reset @volcom @volcomlatam @barberbyamado @i2mpe #directoalsol #eds #estadodesitio #rompecaminos #15años #celebracion #rocknroll #peru #leyendas
It’s tonight! We can’t wait to meet @aestheticareuk and launch our brand new #eDS #GrowthFactor treatment 👩🏼‍⚕️ #aesthetics #skin #needling #skincare #aberdeen
I will love you every single day until forever son! #mysonismyworld #myson #edswarrior #eds #hesperfect #momlife #momof3
I never want to come home! We went on a trip to Havana yesterday and I could've stayed forever! 😍 Even my joints feel better here #vscocam #vsco #ehlersdanlos #ehlersdanlossyndrome #chronicillness #Spoonie #eds #havana #cuba #habana #streetphotography #streetart #art
Yesterday was a complete garbage fire, but this morning I made it to the wonderful underground urban therapy pool anyway. And when that one guy tried to guilt me out of my lane bc I was going so slow, I just kicked s l o w e r. #slowbutdoingitanyway #eds
Molly had surgery last week at Stamford Hospital by Dr Richard Hsu. Her mom saw The Resident (season 1 episode 6) where a patient had MALS and recognized her daughter’s symptoms. Excellent writing, directing, acting, mothering and surgical skill. #mals #nausea #stomachpain #burping #migraines #pots #eds #dysautonomia #sidepain #diarrhea #celiacarterycompression #cacs #dunbarsyndrome #malsawareness #visceralhypersensitivity #centralsensitization #medicalmystery #appendectomy #vascularsurgery #vascularcompression #vomit #IBS #strugglebus #arfid #misdiagnosis #cacs #dopplerultrasound #ultrasoundtech #radiologist #MRI #CTA
Hey :) I have one question. Do you think this is too stretchy skin? I think it's a little bit too stretchy. In one week I have my appointment for the EDS diagnostic at the university hospital Hey findet ihr meine Haut ist zu dehnbar? Ich finde sie ist etwas zu elastisch. Lasst mir gerne ein Kommentar dazu dar :) In einer Woche hab ich die Diagnostik zum Ehlers Danlos Syndrom und ich bin schon etwas aufgeregt 🙈 #chronicmigraine #spoonie #spoonielife   #recovery #depression #health #migräne #chronicillness #invisbleillness #migraine #spoonieproblems #staypositive #strong #illnesswarrior #chronischkrank #fighter  #mentalhealth #hypermobility   #mentalillness #pain #HSD maybe #EhlersDanlosSyndrome #EDS #chronicpain  #spooniefamily #Hypermobilitysyndrome #chronicfatigue #hypermobilitätssyndrom
You don’t always have to feel hopeful about the future. Sometimes it’s enough to just be curious about what is coming. 💕 #ridethewave
Часто слышу от людей - это же порошок 😲 зачем ты это пьешь и ещё ребёнку даёшь !🚫 ⠀ Да, #EnergyDiet выпускается в виде порошка. Но задумывались ли вы, почему? И только ли #ED в виде порошка ?🔴 ⠀ Например детские молочные смеси🍼, каши, супы. Они ведь тоже в виде порошка! С самого рождения дети получают питание в сублимированном виде. ⠀ Наукой доказано, что организм не может получить все микро- и макроэлементы с современных продуктов питания🍏🍌🥕. Раньше, к примеру, чтобы восполнить суточную норму витамина С, необходимо было съесть 2 апельсина🍊. Сейчас 14😨! Четырнадцать, Карл!🙀🙀🙀 . Так вот, для того, чтобы наш организм отлично работал, было создано функциональное питание. Это высушенные и измельчённые продукты (отсюда и вид порошка). ⠀ А главное, в одной порции: 12 витаминов, 11 минералов, ферменты и клетчатка для лучшей работы желудочно-кишечного тракта. ⠀ Также высокий обволакивающий эффект... 👉 у голода 2 основные причины: снижение концентрации в крови и влияние желудочного сока на стенки желудка. Если стенки желудка покрыты пюреобразным веществом, то голод наступит позднее... ⠀ К тому же это удобно - не надо заморачиваться с готовкой: развел с молоком, и вкусный питательный напиток готов🍹 ⠀ Достаточно заменить один прием пищи на ED, и ваш организм скажет вам "Спасибо!" ⠀. 🔥Для приготовления нужно: 200 мл молока 1,5% жирности + пакетик #EDs + шейкер и всего за 1 мин можно получить великолепный, наивкуснейший и малокалорийный коктейль 🍹🔥😍 ⠀ #EnergyDietSmart - любовь с первого глотка 🍹🍭🌟🔥 ⠀ Да и еще, такое разнообразие вкусов 😍 ⠀ Цена 1980 р.🔥 ⠀ Заказать можно самостоятельно, перейдя по ссылке в шапке моего профиля 🔺или назвать Мой 🆔-007-784786 в магазине NL Store⭐ Или просто пиши в ватсап 89029568481 «хочу микс из разных вкусов #енерджисмарт » #красноярск #завтрак #утро #пп #зож #вкусно #завтракпп #веган #яхудею #худейлегко #худеемвместе #эффективнаядиета #диета #надиете #краснодарлюбимыйгород #нетипичныйсетевик #девочкипоймут #девочки_такие_девочки #блондинкирулят #блонди_ксю #девчуликраснодара
Araç kullanırken siz ve sevdiklerinizin hayatını tehlikeye atmayın! Yeni trafik yönetmenliğine göre araç kullanırken telefon görüşmelerinizden dolayı Mobil EDS ve Sabit EDS' lerden ceza yemeyin! Ürünü Keşfet: http://store.linktech.com.tr/linktech-hc20-bluetooth-kulaklik #araç #trafik #trafikcezası #araççakmaklığı #bluetoothkulaklık #EDS #araçşarjı #şarj #LinkTech
#eds #trafikcezası #emniyetkemeri haydi takip edin yorum yapın likelayın beraber takipçilerimiz çoğalsın👍🏼++😊#takip #takipçi #takipet #gt #takipçikazan #takibetakip #beğeni #like #aztagram #az #follow #takipleşelim #tag #fail sayfamızı takip edin pişman olmazsınız👇👇👇👇👇👇👇 🔴türk filmlerinden muhteşem kesitler 🔴komik,eğlenceli,ilginç,videolar 🔴efsane paylaşımlar 🔴hepsi sayfamızda 📽️🎬🎞️ 😉 @efsane.sahne
Made red beans and rice the other day. It turned out amazing but still has a lot of work to go. You see this is my recipe and of course it is #GlutenFree #DairyFree and this version was #QuickAndEasy to make. Going to make this better and then I will share the recipe. This one needs some tweaks as it didn't match exactly the "normal" red beans and rice. However, I've been eating the leftovers, and in my book that means it was fantastic. The smoky broth was my favorite. #GoodForMyBelly #Yummy #FoodHelpsTheSoul #GFDF
Love my new picc line cover from @careandwear ! I went with black for work this time, but am hoping to be able to get some more fun colored ones soon! I will say if you have a longer access cord I would recommend sizing up, but I just stretched mine a bit to make it work! Thank you @careandwear for making such a comfortable and breathable cover! #pots #potssyndrome #potsie #potsawareness #posturalorthostatictachycardiasyndrome #dysautonomia #dysautonomiaawareness #dysautonomiasucks #eds #ehlersdanlossyndrome #edsawareness #behcets #behcetsdisease #chronicillness #chronicillnesswarrior #sharerthelove #piccline #picclinecover #spoonie #infusions #saline #naps #invisibleillness #hope
Araç kullanırken siz ve sevdiklerinizin hayatını tehlikeye atmayın! Yeni trafik yönetmenliğine göre araç kullanırken telefon görüşmelerinizden dolayı Mobil EDS  ve Sabit EDS' lerden ceza yemeyin! #araç #trafik #trafikcezası #araççakmaklığı #bluetoothkulaklık #EDS #araçşarjı #şarj #LinkTech
#Repost @eds_mybeautifulstripe ・・・ I've been trying not to complain through pregnancy as we have both done so well to come so far. I'm still sitting here awake at nights in shock that this is actually happening and I appreciate how much of a miracle it is and how lucky I am. But my god are the last few weeks the toughest on my broken body. Dislocating hips, spd, pots being a gowl and trapped nerve in my back The more baby moves down the more pain I'm in. It's all leading to the imminent arrival of our little one so I'm going to grin and bear it and enjoy last few weeks of pregnancy. I'm so lucky I've being doing well,over all, these last few months. Its crazy that I should have been in Spain now getting ready for my cranio cervical fusion and decompression. Instead of massive neurosurgery in October I'll be having a csection. It is still baffling to me. What a year it's been. Trying to stay off Instagram as I keep myself awake looking at pictures of food 😂 but I'll try update more than I have been as I get asked so many questions. Thanks for all your lovely well wishes they have been amazing. #35weekspregnant #eds #craniocervicalinstability #chiari #neurosurgery #chronicillness #miraclebaby
This quote really hit home with me. Unfortunately over the past year I have lost a lot of people that I care about due to the fact that they don’t believe me or take the time to understand my condition. No, I’m not “faking it”, and as much as I have tried to explain it, it doesn’t seem to get me far. It is emotionally draining to try to explain yourself over and over when others just blatantly don’t care. People who do care shouldn’t need an ongoing explanation and should love you for who you are and be proud of what what you have overcome despite your illness. I’ve simply stopped explaining myself to people who don’t care, because I don’t need the negative energy in my life. The ones who do try to understand and are still there for me have such a special place in my heart💗 #pots #potssyndrome #potsie #potsawareness #posturalorthostatictachycardiasyndrome #dysautonomia #dysautonomiaawareness #dysautonomiasucks #eds #ehlersdanlossyndrome #edsawareness #behcets #behcetsdisease #chronicillness #chronicillnesswarrior #sharerthelove #piccline #picclinecover #spoonie #infusions #saline #naps #invisibleillness #hope #compassion #understanding
I have an appointment tomorrow surrounding whether I am going blind or not and it just keeps on getting my stress levels to rise, bit by bit. All the questions start surrounding me. I know I am losing my sight but why am I? How can I be the only EDS patient with this complication? How much of it am I going to lose? What can be done? Can anything be done? How long do I have? How bad is this going to get? But that can be all consuming and petrifying, and at the end of the day not constructive at all. So for each beautiful person reading this, whatever problem you are facing today, just breathe. You are strong and you will find a way through ☁️💙☁️💙 #eds #edsuk #chronicillness #lyme #reactivehypo #cfs #spoonie
No matter what, no matter who: patient abandonment is NEVER okay.
If you think it’s impossible, DO IT ANYWAYS. And you might surprise yourself. 💕 Saw a quote recently about doing what you fear the most because maybe that’s what you need the most. I definitely felt that climbing Mt. St. Helens was insane. And climbing it confirmed that. But, look what I can do! Sometimes it’s okay to push yourself to your limits and surprise yourself. Even with an invisible illness. I’ve been conditioning myself physically and mentally to climb bigger mountains than this for many years. #mtsthelens #insane #heds #eds #connectivetissuedisorder #hypermobility #hms #fibromyalgia #pots #mcas #nowornever #dream #challenge #mountainclimbing #pcos #pituitarytumor #physicaltherapy #pt #ddd #degenerativediscdisease #osteoarthritis #arthritissucks #arthritis #bonespurs #bulgingdiscs #ulnarnerve #neckissues #mcad #workout #fitbit
I want to say thanks to everyone who has sent me encouraging messages yesterday. My fighting spirit has returned a bit 😊 My body is not better, but my mind surely is! Thank you. I love this spoonie community so much. Please don’t stop sharing your stories with me, your love, healing vibes, and hugs!! ❤️ . . . #chronicpain #chronicpainwarrior #chronicillness #chronicillnesswarrior #autoimmunedisease #autoimmunewarrior #spoonie #arthritis #juvenilearthritis #rheumatoidarthritis #rawarrior #lupus #sjogrens #chrons #lymedisease #fibromyalgia #pots #pcos #eds #ibs #ulcerativecolitis #dysautonomia #endometriosis #endowarrior #dailymemes #motivation
Today I got the watercolor painting I ordered of Nea ❤️ it's beautiful! 🙌🏻😭 Thank you @zebbysart 👌🏻 #watercolorpainting
Tired Bramble boy 🛏🛏 I overslept so we were rushing around and left for uni at 8am, too early for both of us! We had 2 induction lectures in the morning, a campus tour totalling about a mile and then another induction this afternoon. Bramble very happily slept in the lecture rooms no problem. I started having a meltdown this afternoon and Bramble automatically climbed on my lap for DPT and he was licking my tear. We spoke to the animal unit manager and he has no issue in Bramble coming in during practical so Bramble got to meet lots of animals, which he loves. Even the mice came up to the glass and were nuzzling him through it! #bramble #goldenretriever #goldenretrieverpuppy #goldensofinstagram #dogsofinstagram #assistancedogintraining #assistancedog #adit #sdit #dogtraining #puppytraining #socialisation #goldenboy #goodboy #eds #fnd #servicedog #workingdog #actuallyautistic
Today is my 1 year “EDS-aversary”! Aka 1 year since my entire understanding of my life changed forever. This time last year, after weeks of being off my heart rate-controlling medications, feeling like death, and mentally cursing the hell out of my famous cardiologist more than once...I was re-diagnosed with POTS and also received my diagnoses of Gastroparesis and Ehlers Danlos Syndrome suspected Hypermobility Type. I would also end up receiving my MCAS diagnosis a few months later. My whole world changed on this day last year when I learned about EDS. About how it’s genetic, incurable, and is the culprit behind my other 3 physical chronic illnesses. Almost everything that’s ever been physically wrong with me can be traced back to my Ehlers Danlos Syndrome. Crazy right?! It took me almost 23 years total to get my diagnosis and it took me almost 8 years after my POTS diagnosis to get my EDS diagnosis. It really is the most common genetic condition you’ve probably never heard of. At the time of my diagnosis last year, tests showed that I was physically functioning at approximately 30-something % capacity of a healthy woman my age. I’m having 6-8 of those tests re-done this year on October 8th and we’re hoping my results come back to show me functioning closer to 60-something or better % of a healthy woman my age this time around! Fingers crossed! 😊🤞🏼 EDS will always effect me. It will always cause complications and co-morbidities to some extent. It’s in my DNA! But I’m thankful. Without my EDS and without my diagnosis, I wouldn’t have stumbled across the amazing EDS #DFWZebras Community local to me! I wouldn’t have some of my now-best friends in my life. I wouldn’t have some of the most incredible doctors on my team. I wouldn’t have the understanding of myself that I do today. I wouldn’t be the self-advocate that I’ve developed even further into over the last year. I’ve gained far more than I’ve lost in the year since my diagnosis. EDS may suck, but my life does not! Happy 1 year to me! 😁 #EDS #EhlersDanlosSyndrome #Hypermobility #Genetics #MCAS #MastCellActivationSyndrome #GP #Gastroparesis #POTS #PosturalOrthostaticTachycardiaSyndrome #ChronicIllness
IT’S OFFICIALLY FALL 🎃🍂 And you know what that means… a NEW VIDEO with my top 10 favorite items for fall! . As always, the link is in the bio - so go over and check it out and see what I’ve been using this season 🌻 . . . #coffee #coffeelover #coffeeblogger #caffeinequeen #caffeineplease #chronicillness #chronicpain #chronicpainwarrior #chronicdisease #chroniclife #rsdcrps #potssyndrome #eds #invisibleillness #mycoplasma #fibromyalgia #spoonie #spoonielife #spooniewarrior #spooniesupport #spoonielove #spoonieblogger #blogger #bloggerlife #bloggerstyle #vegan #glutenfreevegan #crueltyfree #veganeats #glutenfree
Here is a patient that presented with severe pain and swelling. She had a broad 10 mm pocket on the direct buccal aspect of her tooth. We informed her that the prognosis for her tooth was poor and discussed the possibility of a root fracture. She was motivated to save the tooth. No fractures were evident internally. The two final radiographs are a six month and one year follow up respectively. Moral of the story is don’t give up, but always remember to manage your patient’s expectations.
Чарівне заняття з флористики) #decordesign #eds #flowers #floristics #decor_floristics
Our kindergarteners are excited to be acolytes today! #FoundationsforLife #EDS #Chapel
Raw materials for a great fall dinner you can see in second pick. Only took 30 to prep and get in over. Approx 90 min total cook time. Pork roasted in leeks, apples and sauerkraut; roasted acorn squash, roasted beets and the last of the pink Brandywine tomatoes. Fresh and delicious! #gf #fall #eds #migraine #fibromyalgia #chronicpain #chronicillness #invisibleillness #depression #mentalhealth
My baby. ♥ Always asking me if she can do this and that for me. Always helping me when I'm adamant I'm OK and don't need help. My #minime Asking for chores that will help/benefit me in some way. She's a tough cookie who's witnessed bad days/falls/memory issues etc etc etc. The falls scared her. She constantly wants to be near me for *that exact reason* #disabledmums #mumofgirls #middlechild #spoonie #spooniemum #spoonielife #chronicillness #eds #myalgicencephalomyelitis #edshm #lefthandnervedamage
I've always been a scrapper. I've always had struggles that have made existing difficult and I am no stranger to a good fight. But man, this diseased battleground I'm caught in is more enduring and emotionally taxing than I had ever expected. My mind wants to do so much! And I'm caught and cut down by my own body betraying me. It's crazy to think how my entire life has went from a wealth of excitement and drive to so so SO many things that have been funneled down to just trying to make it through each day. This illness has robbed me of so many things that I love and enjoy in life, but no mostly its robbed me of myself- who I am, all that I enjoyed, and who I know I was to be are shadows squandered by these diseases, which have left me weak and discouraged that I'll ever come out the other side of this battleground. And perhaps, most foreboding is the open-endedness of being left in a limbo of infinite questions paired with ongoing pain and illness with no real answers on how long it will continue, what will help, who will help, how fit is my endurance and if I will ever get myself back- not necessarily my former self but a self not consumed by this disease #gastroparesis #intestinaldysmotility #gitractparalysis #autoimmunedisease #chronicillness #autoimmunedysfunction #supraventriculartachycardia #dysautomnia #panicattack #panicdisorder #anxiety #eds #ehlersdanlossyndrome #ijustwantmylifeback #ijustwantmyselfback
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