Repost @mienfermedadinvisible 馃敮D铆a internacional de los Derechos Humanos.馃敮 馃槺 Sab铆as que a las personas que tenemos enfermedades "invisibles" nos violentan much铆simos derechos humanos. Por ejemplo: 1) 馃斀El Derecho a una correcta evaluaci贸n m茅dica 2) 馃斀El Derecho a un Diagn贸stico 3) 馃斀El Derecho a tener un tratamiento para cualquier enfermedad que padecemos 4) 馃斀El Derecho a no ser juzgad@s por nuestra manera de manejar la enfermedad que tengamos. 5) 馃斀El Derecho a ser realmente escuchad@s. 6) 馃斀El Derecho a disfrutar cualquier espacio p煤blico, incluso si 茅so implica permitirnos acostarnos, sentarnos, usar dos sillas, y cualquier cosa que por nuestra condici贸n m茅dica necesitemos. 7) 馃斀El Derecho a ser tratad@s con Dignidad, porque tener una enfermedad no significa que seamos menos 8) 馃斀El Derecho a no hacer fila y recibir atenci贸n preferencial en cualquier servicio que nos presten. 9) 馃斀El Derecho a decir lo que sentimos. 10) 馃斀 El Derecho a la recreaci贸n. Hay muchos m谩s, pero con esto ya hay bastante que trabajar. NO VIOLES MIS DERECHOS HUMANOS. #superarlensi煤 #zebrastrong #mienfermedadinvisible #ehlersdanlossyndrome #dazzletogether #dysautonomia #pots #macd
1 0
馃挋馃挒馃巹 Repost. A zebra goes solo. . . . 馃摲 Credit: @owenjasonkandume馃挏 馃挆 Comment below if You like this馃挌 馃憤 Love to tag? Please do!猡 馃槉#zebras #zebrastrong #zebrastripes #zebrasofig #zebrascrossing #zebraskinrug #zebrastudio #zebrashades #zebraswallowtail #zebrastripecake
1 0
27 3
Today has been kinda rough and, as childish as it may seem, snuggling with some comfort objects is never a bad idea 馃槈 got this little puppy after my colonoscopy in the hospital a year ago and it always warms my heart knowing it was handmade with love. Speaking of a colonoscopy, my stomach has been really acting up today. I haven鈥檛 had an appetite at all, I鈥檓 been super full, and it feels like food is just not digesting... ugh! #ehlersdanlos #eds #ehlersdanlossyndrome #zebrastrong #zebrawarrior
10 1
馃毇NEGATIVITY. . . Don鈥檛 know how many nights in a row... I seriously need sleep. My nerves and muscles go spastic because of pain and exhaustion. Not a good thing. Not a pleasant thing. I鈥檝e got horrendous contractions in my lower back and it鈥檚 driving me insane. Hurts so bad. Muscle relaxers doesn鈥檛 work. Only sleep would fix that now. Fuck EDS. When I do fall asleep I dream horrible nightmares. Wo-hoo. Trying to stay positive but it鈥檚 getting harder when you鈥檙e always dead tired. Again, #fuckeds. . . #ehlersdanlos #fibromyalgia #pots #cantsleep #chroniclife #zebrastrong 馃
2 0
Starting my week off with a med refill 馃挭馃徏 Taking medication is often so stigmatized, as if what鈥檚 鈥渨rong鈥 with our bodies is our own fault [wrongness itself is a topic for a different day]. So we begin to believe what people say, trying to avoid medication and 鈥渢ough it out鈥 as if willpower were enough to cure. If your medications improve your quality of life in any way, TAKE THEM. There is no shame in using every tool to feel better. You deserve it - don鈥檛 let anyone tell you different 馃拪馃拪馃拪 #choosehappiness #takeyourmeds
89 7
馃憤馃挄馃挌 zebra 鈥 鈥 鈥 馃摲 Credit: @nicolettebphotography馃挀 馃挆 Comment below if You like this馃槉 馃挀 Love to tag? Please do!猡 馃挋#zebras #zebrastrong #zebrastripes #zebrastudio #zebrasinhats #zebrascrossing #zebraspiderdiy #zebrasoma #zebraswallowtail #ZebraSquare
1 0
This is the amazing news! Could not be more amazed and grateful!! (I am not telling her the date because every time we have something special to do she ends up in the hospital so I am trying to not jinx it by sharing the date) There are many many days that Sawyer鈥檚 life is just frickin unfair. Today I got to share some amazing news with her. The amazing kindness of someone whom we have never met who also is a chronic pain warrior and wanted to get something for Sawyer that I would have never been able to! Feeling so grateful! #ehlersdanlossyndrome #dystautonomia #pots #ketotichypoglycemia #chronicpain #chronicillness #warrior #zebrastrong #chronicpainfighter #grateful #wishes #amazing #wicked @wicked_musical #dreamcometrue #shedeservesthebest
14 2
Ehlers Danlos Syndrome warrior tshirt #zebrastrong #edsawareness #rarediseaseawareness
29 4
My trip to Boston to see Dr Castells went very well. I made it through the whole trip without any severe reactions- other than the stress reaction while at my appointment. When the receptionist questioned my insurance coverage, it set me off. Insurance is so stressful. I confirmed in network coverage with Brigham and Women鈥檚 Hospital, as well as BCBS, before my appointment, but I feel like I never know anymore because they can change whenever they want. Anyways, I spent most of my appointment with one of her assistants who I really liked a lot. She asked me a lot of questions and wrote down info. I saw Dr. Castells and she explained their process: first we rule out mastocytosis with a #kit gene mutation test and a tryptase test. If both of those are negative, they will put me in the MCAS category. If either of those tests show positive, they will have me do a bone marrow biopsy to check for mast cells. She ran some additional tests to check me out overall. The labs are resulted and I鈥檝e left a messaging asking her to share them with my allergists at Rush as I now have an appointment there tomorrow. So hopefully there are some good answers! Dr Castells told me they are working on a cure and said that I could introduce aspirin therapy and another mast cell stabilizer caller ketitofen to help me currently. She also said she has many patients on a medicine called Xolair and they are improving greatly. So I am very excited to hear all of these things that can help keep me stable and maybe let me eat more and live a decent life. Hopefully it just keeps going up from here!
19 1
馃挄馃挋馃拰 Prepare to be kicked! /聽 Like most African mammals, zebras also form bachelor herds of young males that are not yet ready to challenge a dominant stallion. They practice for their fight by play fighting each other, which takes up most of their time. These two males were just one of many mock fights that occurred around the waterhole that morning - definitely not 'playful' in any way but they need to learn somehow! 馃摲 Credit: @cc_bean馃挊 馃挆 Comment below if You like this馃挀 馃挄 Love to tag? Please do!猡 馃挋#zebras #zebrastrong #zebrastripes #zebrasarasa #zebraspiderdiy #zebrasarasapens #zebrastone #zebrasoma #zebrasport #zebrastreifen
3 0
The only present I need under the Christmas tree 馃巵 He鈥檚 been so affectionate these last few days. He鈥檚 a sweetie! I鈥檓 a dog person 100%, but this little man stole my heart. What are you wishing for this Christmas? I鈥檇 love to get a new vanity mirror, or some gift cards for @pinupgirlclothing 馃槏 there鈥檚 health related stuff I need, but where鈥檚 the fun in asking for those for Christmas?! Hope you鈥檙e all having a high spoons weekend! #pots #posturalorthostatictachycardiasyndrome #eds #ehlersdanlossyndrome #hypermobilitysyndrome #spoonie #spoonielife #chronicillness #chronicpain #chronicmigraines #zebrastrong #christmas2017 #catsofinstagram
36 0
Snow time!!! 鈽冿笍
102 3
I honestly feel like I鈥檓 still recovering from Thanksgiving. 馃槬 I鈥檝e just been extra exhausted and sleeping a lot more still. It鈥檚 been so hard trying to force myself to study. Hopefully I can get it together.馃ぃ Plus I just love this time of year so much because it鈥檚 also my birthday month. Who wants to study this close to Christmas? 馃し馃徎鈥嶁檧锔廔 was a Christmas Eve baby and the best Christmas present ever!馃槆 I鈥檓 just kidding. 馃槀馃槀馃槀 But aside from the extra pain from these frigid temperatures, I love this time of year. How鈥檚 your month going so far? What are you looking forward to?馃檪鉂勶笍 #chr#christmas #christmastime #christmas2017 #christmas #theholidays #december #chronicpain #redhair #shorthair #christmasscarf #glasses #blueeyes #scarf #winter #disabledandcute #disability #chronicillness #chronicfatigue #chronicallyill #birthdaymonth #christmasevebaby #invisibleillness #zebrastrong #eds #ehlersdanlossyndrome #potsie #tbi #spoonie #spoonielife
65 2
Day 1- EDS vascular type, POTS, Dysautonomia, endometriosis Day 2- Essential oils or socializing because 鈥渁ll that medical crap is just anxiety鈥 Day 3- After years and years of hard work and building up muscle in Dance, I鈥檓 beating this illness Day 4- brownies and Tim Burton Day 5- neuro bliss or white Gatorade Day 6- 鈥渋t requires more courage to suffer than to die鈥 Day 7- SALT AND GATORADE Day 8- Microgestin Day 9- time, time to fix everything Day 10- my lack of endurance 鈥 鈥 鈥 #spoonie #ehlersdanlossyndrome #eds #dysautonomia #endo #endometriosis #pots #posturalorthostatictachcardiasyndrome #posturalorthostatictachycardia #tachycardia #braedycardia #vasculareds #minnesota #mn #dance #dancer #tapper #contemporary #lyrical #ballet #jazz #music #zebra #zebrastrong #edszebra #zebrastripe #zebrastripes
37 0
馃憤馃挃馃尭 Hold up take a moment, count my Guap, count my Guap 馃幎馃 . . . . . 馃摲 Credit: @flowerboy.96馃槝 馃挆 Comment below if You like this馃槏 馃槝 Love to tag? Please do!猡 馃巵#zebras #zebrastrong #zebrastripes #zebrasport #zebrasucculent #zebrasinhats #zebrashoes #zebrascrossinglodge #zebraswallowtail #zebraskinrug
5 0
(Old pic) Its been hard, extremely hard. My health has been getting worse and I want answers. Im always dizzy, lightheaded and when im up, I feel like im about to faint. I know everyone feels like that once in a while but this has been going on for about 2 weeks. And im so weak and tired, I can barely walk to the washroom. They said it was anemia, infusions just made me feel worse. Im not seeing a doctor before January, I can't do this. #spoonie #spoonies #chronicallyill #chronicillness #autoimmunedisease #crohns #primarysclerosingcholangitis #fatigue #tired #sick #spoonielife #undiagnosed #medicalmystery #raredisease #zebra #zebrastrong #spoons #chronicfatigue #chronicillnesswarrior #dizzy #chronicpain #invisibleillness
17 2
鉂勶笍 It鈥檚 beginning to look a lot like Christmas... 鉂勶笍 That鈥檚 right, it finally snowed here in Massachusetts!!! Even though I wasn鈥檛 outside for much longer than a half hour (I get exhausted very easily these days), it was so refreshing to be outside and enjoy the beautiful, snowy scenery! Elsa loves the snow, but she also couldn鈥檛 be outside for too long as the snow bothers her paws. 馃惥 It also wasn鈥檛 too cold, but unfortunately these decent temperatures won鈥檛 last for too long since it鈥檚 supposed to get wicked cold (as we say here in MA 馃槈) this week (Wednesday鈥檚 real feel temperature is going to be 5掳F/-15掳C 馃槼). Although I鈥檓 now curled up in bed with a cup of tea and plan on being inside for the rest of the day, I鈥檓 glad that I finally got some fresh air! 鉅鉅鉅鉅鉅鉅鉅鉅鉅 #snow #winterwonderland #ostomate #ileostomy #ostomy #stoma #girlswithguts #ostomyawareness #chronicillness #invisibleillness #spoonie #chronicallymotivated #eds #ehlersdanlossyndrome #zebrastrong #dysautonomia #orthostatichypotension #pots #mastcellactivationsyndrome #endometriosis #endowarrior #klippelfeilsyndrome
145 2
Does anyone have tips on dealing with shortness of breath that can't be pinpointed to a specific problem? Right now I'm doing the #badgerbalm and #blueridgehempco's breathe easy and concentrate roll on. Both help a little, but overall, it still feels like I can't get a full breath or like my lungs can't fill all the way. It gets worse at night and after I've eaten. This has been happening for several months but has been almost consistent over the last week. I've had to sleep sitting propped up, have woken abruptly several times feeling like I haven't been breathing, and have had to take anxiety meds to keep the "I can't breathe" panic under control. My oxygen levels are completely fine sitting around 98-99%. . . #breathing #breathingissues #cantbreathe #asthma #gerd #chronicillness #chronicallyill #spoonie #spooniestrong #spoonieproblems #POTs #potsie #potsiegirl #ehlersdanlos #ehlersdanlossyndrome #eds #edszebra #zebrastrong #edstype3 #hypermobileeds #hypermobileehlersdanlos #hypermobilityeds #posturalorthostatictachycardiasyndrome #fibromyalgia #chr#chronicfatiguerome #chronicfatigue #chronicpain
22 0
Alright, I'll jump on the bandwagon too. Pretty surprised at the collection, actually. And very proud to have done so much - in relative terms that is. Yay for me. And yaaay for all you who 鈾'ed! 鈾 you right back. . . .#2017bestnine #rgd #redditgetsdrawn #drawing #painting #sketching #thankyou #luvyou #thatwasfun #toomuchinspirationtoolittletime #zebrastrong
40 0
With my 2 kiddie zebra's, proud of them and totally in 鉂も潳鉂 #zebralife4us #zebrastrong #ehlersdanlossyndroom #proudmom
10 1
Happy birthday Mommy!! We love to cuddle with you!! I love to cuddle on your lap! And I love to cuddle on your chest right by your heart! Thanks why I look so much bigger than baby sister! We hope you have a purrrfect and blessed day!! We woof mew! . . . . . . . Also if anyone wants to give mommy a small gift you can donate even a dollar to our GoFundMe page(link in bio馃お) Every dollar helps and please share it!! Service dog training is extremely expensive!! Thank you!! . . . #lov#lovesnospecies #love #sisters #cut#cuteoverload #happybirthday #woofmew #cute #smoothcollie #kitty #cat #servicedog #EDS #edsstrong #zebrastrong #spoonie #ehlersdanlossyndrome #spoonicorn #disability #pictureoftheday #photooftheday #midnight #goodnight #15sleeps #makingmemories #cuddlebugs #sleepy #GR #grandrapids #eastgrandrapids #themittenstate
20 0
鈥楢pplying for Disability Benefits with Ehlers Danlos syndromes and Other Hypermobility Related Disorders鈥 - http://edswellness.org/blog/2017/12/09/applying-disability-benefits-ehlers-danlos-syndromes-hypermobility-related-disorders/ #EDSWellness #Just5Minutes #Wel#Wellapalooza #Wellapalooza #IntegrativeMedicine #CranioSacralTherapy #ChronicPain #EDSStrong #Persevere #LiveEDSStrong #ZebraStrong #InvisibleStrength #hEDS #hypermobilityspectrumdisorders #LiveEveryDayBetter #MCAS #Dysautonomia #Stronger2Gether #Spoonie #Strength #MoveYourDNA #movenourishbelieve #CFS #EhlersDanlosSyndrome #Hypermobility #Allergies #ChronicIllness #InvisibleIllness
67 0
鈥淭here is a difference between giving up and knowing when you have had enough鈥 The past couple days have been really hard since the Colonoscopy/Endoscopy. My body is so sensitive to change and being poked. So pretty much eating/drinking any thing gives me horrible pain. This is a major problem because I have not eaten anything in 3 days and if i can鈥檛 get back to eating 鈥渘ormal鈥 by Monday, i will probably be going somewhere i really don鈥檛 want to go. The last thing i ate was Cashew Ice Cream and then when to the ER because the pain was so bad. And even drinking Neocate right now is torture. Also today my mom and I got into it about by eating. She was saying that I need to at lest try. Um, mom, how else would I know that there is a tortuous burning/stabbing pain in my side. We also got the results of the biopsies and everything looks good, so why the pain?!?!
88 22
馃槉馃挐馃挍 I reffed tonight and Matt is pulling a classic @iamtherockstar face. He acts like he鈥檚 having a terrible time but I know he鈥檚 not WHATEVER YOU LOVE THIS 馃摲 Credit: @moriahpariah馃槝 馃挆 Comment below if You like this馃挀 馃崁 Love to tag? Please do!猡 馃挅#zebras #zebrastrong #zebrastripes #zebrashades #zebrashoes #zebraswimsuit #zebraswallowtail #ZebraSquare #zebraspiderdiy #zebrasprint
11 0
If you missed yesterday鈥檚 post, we set up a 鈥渕agic tree鈥 yesterday and today we have a broccoli Christmas tree...馃槵馃槀. Just the laugh I needed today! I thought my #POTS flare was over, but it鈥檚 back with vengeance today and my stomach has been acting up too. It鈥檚 the perfect evening to relax on the couch watching Into the Woods- one of my favorite movies! #ehl#ehlersdanlossyndrome #ehlersdanlos #Christmasmagic #zebrastrong #zebrawarrior #eds #edsstrong
24 0
馃巹馃挄馃拰 馃摲 Credit: @edinsgram馃拫 馃挆 Comment below if You like this馃巹 馃槝 Love to tag? Please do!猡 鉂#zebras #zebrastrong #zebrastripes #zebrashoes #ZebraSquare #zebrastone #zebraswimsuit #zebrasinhats #zebrastudio #zebraswallowtail
12 0
I love bones!! I love bones so much I hoard them on mommy鈥檚 bed and fall asleep with my nose in them! #16sleeps #smoothcollie #lov#lovesnospecies #cut#cuteoverload #mamasgirl #love #puppy #sleepypuppy #cute #pictureoftheday #winter #servicedog #EDS #zebrastrong #servicedogintraining #yes #goodgirl #goodnight #sisterissleepingtoo #kitty #cat #P #GR 鉁煇攫煉涴煇锯湪
14 0
He's my bestie! What would I do without him? #bbf #bbfl #hedgehogsofinstagram #zebra #zebrasofinstagram #zebrastrong
4 0
馃挄馃挄馃挄 12.7.2017 馃摲 Credit: @moskistyles馃挆 馃挆 Comment below if You like this馃専 馃尭 Love to tag? Please do!猡 馃挓#zebras #zebrastrong #zebrastripes #zebrastudio #zebrasofinstagram #zebrasharks #ZebraSocks #zebrastone #zebraskinrug #zebrascrossing
8 0
These #lint #ornaments were so much fun to make! I saved up the fuzz from all the #pompoms I鈥檝e made over this past year and voila!! 馃槏鉀勶笍馃巹馃巺馃徏馃ざ馃徎馃巹鉀勶笍馃槏#holidayfun #upcycling #oneofakind #han#handmadetter #livinginthenownotthen #LINt . . . . . . . . #bossbabe #ehlersdanlosawareness #zebrastrong #invisibleillness #zebraspoonie #spoonie #spoonielife #cro#crochetaddict #crochetersofinstagram #crochet #yarn #handmade #yarnaddict #homedecor #loveineverystitch #crochetlove #crochettherapy #yarnspirations
21 0
My just ran a mile for the first time in years face. Workout's getting out if the pool. #zebrastrong #stayingwell
18 2
The last few days have been some of the most #painful, #challenging, and #frustrating I've been through since probably February of this year; that is of course excluding the #CSFleak, that was its whole other can of worms. It's been a year since I got diagnosed with EDS in December of 2016. I've learned so much since being Dx'd, but still have a couple truck loads still to learn about #ehlersdanlos. In a way, you've been a blessing in disguise, helping me understand the struggles I experienced as a kid. EDS isn't all black and white. It's colors mixed together that cause #chronicillness #patients to feel great one minute, and terrible and scared the next. The next time you see a person with an #invisibleillness, remember, it's not all black and white. #zebrastrong #spoonie #dysautonomia #ehlersdanlossyndrome #butyoudontlooksick #mcad #mcas #tmj #chronicpain #ibs
21 0
When you鈥檙e recovering from surgery and dealing with multiple chronic illnesses, even the smallest achievements can make you feel accomplished. For me, this is realizing that I remember how to knit! 馃憤馃徏 鉅鉅鉅鉅鉅鉅鉅鉅鉅 Last year I learned how to knit, and got so obsessed with my new hobby that I was making project after project (scarves and hats) from October-January. For this Christmas, my sister requested that I knit her a beanie. Because it has been almost a year since I鈥檝e picked up my knitting needles, I was afraid that I would have lost this skill. However, as soon as I started casting on the first stitches and knitting the first real row, it all came back to me! Although I will definitely be working at a slower pace than I was last year, I鈥檓 looking forward to the finished product and giving it to my sister. I also find the relaxing nature of knitting to be quite therapeutic 鈥 especially when I鈥檓 not feeling well, in pain, and hooked up to saline! 鉅鉅鉅鉅鉅鉅鉅鉅鉅 #knitting #ostomate #ileostomy #ostomy #stoma #girlswithguts #ostomyawareness #chronicillness #invisibleillness #spoonie #chronicallymotivated #eds #ehlersdanlossyndrome #zebrastrong #dysautonomia #orthostatichypotension #pots #mastcellactivationsyndrome #endometriosis #endowarrior #klippelfeilsyndrome
193 9
Looking forward to 2018. 馃じ馃徏鈥嶁檧锔
35 2
馃槉馃憤馃崁 It's done. I can not wait for my new Scanner to arrive...馃槉 Unfortunately the colours in this one are slightly off. 馃槺 馃摲 Credit: @carinakramer_artist馃挓 馃挆 Comment below if You like this馃挅 馃挃 Love to tag? Please do!猡 馃巹#zebras #zebrastrong #zebrastripes #zebrascrossinglodge #zebrasport #zebrasarasa #zebrasharks #zebrastreifen #zebrasucculent #zebrastyle
5 0
This is very hard for me to post but need to for awareness of SIBO (small intestine bacterial overgrowth) & Leaky Gut Syndrome... I was also diagnosed with CSID (Congenital Sucrase-Isomaltose Deficiency) which I was born with which means I do not have the Enzymes to properly digest sucrose (table sugar/ cane sugar) and certain starches and these are also found naturally in some fruits and vegetables like pineapples 馃崓 cantaloupe 馃崍 obviously with starches potatoes 馃 etc.. So I have suffered with bloating, tummy pain, gas bouts of malnutrition etc ., since I started solids as an infant 馃懚馃徏 at age 35 I finally got a diagnosis!!! 馃檶馃徏 now for SIBO Is where the acne comes in, I have had this since about August took a lot of research to finally figure out it was coming from my digestive system.... I have had to change my whole diet which is tough with my Mast Cell Activation Syndrome I am obviously not able to where any makeup and it鈥檚 very embarrassing and painful at times and causes bouts of depression (acne depression) I have learned to love myself at the core of Amanda Jean ! I am learning who really loves me for me! I am becoming braver than I have ever been! I am learning lessons I have never learned! I am becoming a whole new Amanda Jean but staying so simple at the same time! It鈥檚 Amazing Grace! 馃晩 I will share the things I have learned about natural organic products and makeup and vitamins and food and cannabis strains and physical therapy and the word of God as I go along my journey! One Love people !!! 鉂わ笍馃А馃挍馃挌馃挋馃挏馃枻馃挐鉁濓笍馃寛馃挮馃寵鉂勶笍鉀勶笍馃憫馃巹Happy Holidays Jesus is the reason for the Season! . . #sibo #acne #onelove #cannabis #congenitalsucraseisomaltasedefiency #csid #pots #cyclicvomitingsyndrome #chronicillness #acnedepression #organic #jesus #amazinggrace #essentialoils #christian #mastcellactivationsyndrome #awareness #ehlersdanlossyndrome #chronicpain #zebrastrong #butyoudontlooksick #happyholidays2017
28 4
Another new adventure. Seri has been suffering the effects of a severe B12 deficiency. We are not sure if the deficiency is due to treatments for her autoimmune encephalitis or if it is the result of something else. Last night we began the process of treating it by giving B12 shots at home. Sometimes it pays off that mom is an RN. #autoimmuneencephalitis #B12deficiency #B12injections #Nursemom #raredisease #zebrastrong #serisfight
17 1