The best 10 Year Challange I have seen yet! @ehlers_danlos_tees strikes again!
Seriously... All Dr.'s, every single one of them, now say the same thing when new symptoms arise, ever since I have been diagnosed, "Eh... It is just your EDS. This is your new normal." That sums it up. Just deal with it... 🤷♀️🤦♀️🤷♀️
Remember my 🦓Zebras🦓... Doctors are just 'practicing.' 🤣 👨⚕️👩⚕️🤣
Happy Saturday! A little trip down memory lane... I try to learn as many techniques as possible, but, I also am limited by an inherited connective tissue disorder called Ehlers-Danlos. To date, I’ve had 21 surgeries and wear medical splints on my fingers. In the near future, I will have to have my dominant wrist fused permanently. Little Silver Linings is just me, hoping to create beauty that finds its way to others to make them feel good. 💜
Ehlers-Danlos limits the amount of wire wrapping I can do, so I try to connect the creative vision in my brain with the reality of my body, the best I can. 🥰 Lately, I’ve been focusing on the BEAUTIFUL gifts the earth gives us by choosing and pairing the most stunningly gorgeous stones. 😍 Beautiful in their simplicity, and hopefully amplified by other materials choice and design. But these two are a few of my favorite wire-wrapping and Czech glass bead pieces. Each wire cut and turn and connection were done by yours truly! More of those types coming soon! Custom orders available at no extra charge.
I hope your day has a silver lining! 💜
Swipe for a mere pixel in the picture of my chronically-ill life, on my terms. Just a little reminder that you never know the kind of pain and exhaustion someone is pushing through. Today, as usual, I copped plenty of inquisitive, lingering, sometimes judgmental stares with my stick in hand, compression socks + my neck brace and mask; at the doctors. You can almost see the question “omg, what is wrong with them?!” written on their foreheads. It’s almost like they’re stuck staring at me because something doesn’t quite compute. To those strangers, I wanna say: if you’re gonna speak don’t expect a response, an explanation of Ehlers-Danlos, or even a smile. Don’t expect me to politely endure your healing prayers for an illness you know nothing about or your speech about me being an inspiration for just existing. Disabled people don’t owe you anything. Even on a good day, I get to choose where I invest my limited energy. If your fragile ego can’t deal, that’s your problem. Now, if you tell me I look fierce, there’s a chance you’ll make my day... but PLEASE, before you dig yourself a hole to China, leave it at that✌🏼 Today, I I had the most ridiculous experience, I kind of can’t believe it’s real. A very odd, old fella sat next to me, and after complimenting my colourful clothes, gently placed one finger on the top of my head, and said (IN A ROBOT VOICE!!) “I am examining you...for fate and hope...and injecting you with hope...for your life”🤖True story folks, I swear. Okay, like how on earth did he imagine that this was even in the realm of acceptable things to do/say? Mum was not at all impressed. However, perhaps it was the delirium from last night’s events, but I was laughing hysterically all the way home. I mean, just.. wtf dude??!🤦🏻♀️😅🤣
Little self-indulgence after a long week. @so_delicious unsweetened coconut yoghurt & frozen raspberries sprinkled with @purisure pure stevia.
I tried @katefarms standard formula this week: I was surprised how highly palatable it is. Best of all, I did not react. The only downside is the excessive sweetness. After being keto/low-carb for so long, my tastebuds find sugar & natural sweeteners extremely sweet, a nauseatingly bitter type of sweetness.
I hope, pray & beg Kate’s Farm to consider a low carb, very low glycemic index, no fructose, no agave syrup formula, for those of us in the #MCAS community with high insulin sensitivity, fructose intolerance & a preference to avoid agave. Pure stevia does not affect my blood sugars. There is nothing currently on the market to serve this population.
I will stick with Kate’s Farm for now, given that I have no other choice. The max dose of metformin I take in combination with linagliptin, a DPP4 inhibitor, aimed at resetting my beta cells to secrete less insulin in response to the stimuli of food hitting my stomach, will hopefully protect me from the fructose’s long term consequences.
Insurance frowned upon switching montelukast to zileuton, but I had no time and energy to argue with them. I had a better idea, and my allergist agreed. I will try ketotifen 3mg three times a day, given that it is an overall mast cell stabilizer. That’s more than 4 times the recommended daily dose...It has been a month since I started cromolyn, which only affects the GI tract, but I can’t tell a difference yet. I have not noticed any side effects either. I know it takes a few months to start working, so I’ll continue taking it. I am hoping that I will be able to cut back on all the other antihistamines soon in fear of early dementia.
I am still on the fence about Xolair, I am not sure I want to play with immunomodulators yet. What if there is no going back? But then again, what if Xolair is my miracle drug like so many others’ in the #chronicillness community. Chemotherapy is the last resort, my allergist already made reference to it on my papers, but I refuse to hear about it until all other options are exhausted.
I wasn’t sure if I wanted to share this but screw it. So for those of you who don’t know, I have gastroparesis. Basically gastroparesis means paralysis of the stomach. This is caused by Ehlers Danlos Syndrome. So what this means for me is that my stomach is unable to digest what I eat. This means that I haven’t been able to get enough nutrition. So after trying different diets and medication, my doctors and my dietitian decided the best option would be to place an NJ tube which would bypass my stomach. This is kinda scary and a big adjustment. So this morning they took me down to endoscopy and put in the NJ tube. Honestly it’s not fun. My nose is sore and my throat hurts every time I swallow or try to talk. But I’ve been told that will get better. So typically Kate Farms wouldn’t be the first formula to try, but my dietitian recommended it because it was the only one that they have in my hospital that doesn’t have any milk ingredients and is gluten free. They also don’t normally stock Kate Farms at my hospital but luckily they had a bunch of sample boxes that I can use. I’m just waiting for the nurse and then we’re going to start running the feeds. Wish me luck! 🤞➰
Day 14 Myths About My illness
Some people don't believe the pain associated with disorder and it's very much real. Those party tricks we are well known for are dangerous and can cause injuries over time. Though they look "fun" they are not! The biggest one "You don't look sick". Ehlers danlos is a invisible disability. It doesn't have a set look and EVERY Zebra is different.
"It's all in your head" sort of but not really at all. It translates intk very really physical symptoms as well.
Depression: maybe if you just eat right and exercise more and get out you'll feel better. WRONG clinically diagnosed depression doesn't just go away with these changes. It's a chemical imbalance which I fight ever day. Although they MAY improve your health and wellbeing over time. It's by no means a cure for depression.
Borderline Personality Disorder: There is soooo many myths about this disorder it's crazy. I don't have a split personality. I'm not bordering on psychosis. I'm not bat shit crazy. I have issues regulating my emotions. I tend to be very sensitive and I cry A LOT.
i saw my fav comedians the tenderloins troupe 😤🙏🏻 @impracticaljokersofficial
molly got me tickets to see them for our 2 year! it was honestly the best night i’ve had in a longgggg time! AND i was in baltimore and not admitted! that’s the first time that’s happened in two years! also, yes i ate that food and yes i regretted it to the max. sometimes you push yourself really hard in sake of a good time. am i completely wiped and still feeling like shit from that food? yes. would i do anything differently? no. i had never been to a show of any kind before last night and you best believe i was eating some popcorn and laughing till i about passed out. fuck eds and all that comes with it. y’all don’t got shit on me. #ehlersdanlossyndrome#ehlersdanlosawareness#impracticaljokers
The quest for truth, answers and sustainable healing is a hallmark of any chronic warrior's journey. It can be a long discouraging road. Stay strong in the fight fellow spoonies. In your art and words remember who you truly are. Uplifting mixed media artwork from @juliagodden. This artist faces hypermobility. #creativebeyondchronic
•“Hai avuto un’incidente?”
“No, soffro di una malattia rara”
“Ah, mi dispiace! Ma non senti dolore vero?” “In realtà sì, soffro di dolore cronico invalidante. Prendo un medicinale più forte della morfina per cercare di tenerlo a bada, ma ci sono giorni come oggi, in cui il dolore è talmente forte che non mi sembra nemmeno di avere addosso h24 un antidolorifico così potente.”
“Ma davvero? Eppure non l’avrei mai detto, non sembra tu soffra, hai un viso così sereno, così sorridente” “Già, proprio per questo la diagnosi è arrivata tardi...”•
Queste sono solo alcune delle domande a cui giornalmente devo rispondere. Non mi disturbano, molte persone sono davvero carine e gentili, l’unico problema è che in generale la società non riesce a comprendere che dietro ai sorrisi si possono nascondere i peggiori drammi e incubi. Chi soffre fisicamente o psicologicamente, secondo l’opinione generale, deve per forza esser triste, arrabbiato, angosciato o scoraggiato, altrimenti verrà considerato sano e felice. Non nego ci siano momenti in cui sono arrabbiata, triste, scoraggiata, sono umana, cerco di combatterli e andare avanti, ma spesso mi sento a disagio perché se non mostro questi “momenti”, nessuno crede stia male, credono siano parole esagerate di una persona in cerca di attenzioni. Un medico poco tempo fa, ha supposto volessi un antidolorifico credendo ne fossi dipendente, e questo perché? Perché non conosceva la patologia, e perché non urlo, non piango, ma stringo i denti e cerco di esser forte, soprattutto per me stessa. Comunque, alla fine, io continuerò ad essere ciò che sono, senza fingere, sperando che prima o poi, le persone riescano a comprendere, andare oltre un semplice sorriso che invece dentro nasconde l’inferno.
Ecco me in una classica giornata di merda: Vedi foto ⬆️ #ehlersdanlossyndrome#butyoudontlooksick#warrior#raredisease#disability#invisibleillness#ehlersdanlosgrrrls#eds#dysautonomia#chronicillness#chronicpain#redhead#redhair#powergirl#strongwomen#geneticdisorder#posturalorthostatictachycardiasyndrome#ehlersdanlosawareness#instadaily#instagood#picoftheday#spoonie#spoonielife#fighter#sindromediehlersdanlos#ehlersdanlossyndromeawareness#potssyndrome
“I realized that there is so such thing as ‘sick enough,’ you don’t need any ‘proof.’ All you need to know is you’re valid no matter what. Whether your disability is the most visible thing ever or the most invisible thing.” - @elliewheels for @trustmeimsick 🎥: @luisaconlon#TrustMeImSick
Some disorders of nerves can be caused by inflammation from a person’s own immune system. This is called an autoimmune neuropathy. One form of autoimmune neuropathy is Guillain-Barré syndrome GBS. Sometimes this is triggered by an infection like the flu or gastroenteritis. Numbness and weakness come on abruptly and progress quickly. In some cases, people with GBS can become completely paralyzed and need a ventilator to assist their breathing. The manifestations of GBS stop progressing within in 2 to 4 weeks. Although most everyone with GBS improves, it can take up to a year to recover and some people can be left with significant problems.
Dr. Saperstein has spent over 20 years diagnosing, treating and researching GBS. He lectures nationally and internationally to other neurologists teaching them the optimal ways to diagnose and manage these conditions. At the Center for Complex Neurology, Dr. Saperstein and his team will provide you with a state of the art assessment of your neuropathy and guide you through the most appropriate and effective treatment for your condition.
2009 vs 2019...
I've definitely learnt my angles! But most importantly in 2009 I was relatively healthy (not a wheelchair in sight!), dislocations were bi-annual not bi-weekly and I had never heard of a tricky little condition called Ehlers Danlos Syndrome.
The last 10 years have changed me, a little in the looks department but mentally and physically, I am a completely different person!
Now, many years and healing treatments internally and externally later, I am proud of my 3 pull-ups! I do less rigorous activities and engage in more enjoyable movement. I’m seeing more results on just 20-30 min a day 5-6 days a week than I ever did with “insanity, boot camps, etc etc”! I swim, do restorative and tantra yoga, pilates at my pace, Kayak, walk, what I call WOG (walk/jog), and use my magic pill the Power Plate along with some mild weights. Now I’m skateboarding like a teenager, and can stop when my body says to. I can take days off as well to honor the internal needs of my body. I’m happy with my body and honor it’s ups and downs as a rite of passage and a communication tool. I don’t need to be in cross fit to be strong (no disrespect), and I don’t need to do more than my edge of discomfort.
PS Ignore the jokester in the background (@kawailee3 - didn’t see him doing any pull-ups did you?!!
I finished this journal last night. As I flipped through it I was reminded of how far I have come and how much I have been through since I first started this journal in July 17th, 2016 - just shy of two weeks before my dad's heart transplant. It's been a really tough few years, but what I am most proud of is the dedication I have made to my selfcare despite the challenges my family and I have endured. Buying this journal was my first step in my journey to healing. I am so grateful a small part of me had the fortitude to set intentions on the first pages of this journal and really dedicate time for self reflection and self care. The transformation, looking back now, is significant. It took almost 3 years, but the work I did, those intentions I set in this journal actually started coming to fruition in the last few months. #journaling#selfcare#intentions#selfreflection#chronicillness#mentalhealth#healing#therapy#itsgoingtobeokay#journaltherapy#ehlersdanlosawareness#hearttransplant#caregiver
4 223 days ago
Love to travel, hate the idea of planes leaving at like every minute, 3am not so good 😜😴
There are 13 different types of EDS with several crossovers and too many comorbidities to mention here. It can be fatal. Those with The Vascular type vEDS typically don’t live past their 50s. ❤️ My husband and daughters have the Hypermobile type, hEDS. My daughters live with constant pain from joints that aren’t stable. Physical therapy is vital for them to have to remain mobile for as long as possible. #eds#ehlersdanlos#ehlersdanlossyndrome#ehlersdanlosawareness#hypermobileeds#heds
I spent years and years avoiding talking about my health with anyone. Doctors told me I was healthy or that it must be all in my head. Calling you anything was better than calling you ‘I don’t know’ so I made up some names for you along the way.
I called you depression, fibro myalgia, PTSD, anxiety, black mold poisoning, adrenal fatigue, and even karma. I also made up names for myself. I called myself lazy, weak, a liar, not pushing hard enough, and broken.
But then, I finally met some angels who got you to tell them your name. And I stopped calling myself fake names too.
Learning what to call you helped me learn who I am. You are in my DNA and a part of me, even though I’m the only one who can see you.
And I will keep screaming your name from the rooftops until everyone knows what to call you, and I will try to show them what you look like.
Now I call myself a constellation and I call you Ehlers Danlos Syndrome. I don’t always love you, I don’t always even accept you, but at least I know your name. And that changes everything.” - @stevieboebi 📸: @marsupialpudding
207 26271:04 AM Dec 14, 2018
Check out 26-year-old model Sara Geurts (@sarageurts) who has Ehlers-Danlos syndrome, a connective tissue disorder that can affect the way collagen is processed. Geurts has decided to not let her skin condition stop her from living her life and inspiring others. Geurts told @mic that “the amount of Ehlers individuals who have offered their insight and support has been what keeps me going.” Guerts’ advice for anyone struggling with self-image is to “never give up. Know you always have support, and reach out to those when you need. The journey you are on is individual to you, and makes you who are. No one else walks the same journey, or bears the same stripes as you. Wear your stripes with my pride, my love, and know you have a whole herd of support.” 🙌
So, many of you have been wondering why I’ve been using a wheelchair and walker sometimes... I decided that in honor of October being Dysautonomia Awareness Month, I wanted to share my story. I have an Autoimmune and genetic disease called Ehlers Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS). An autoimmune disease is something you’re born with but the symptoms can begin at any point in your life. For most people, there is something that triggers the disease or makes it worse. One of the diseases, POTS, affects the autonomic nervous system and disrupts functions that most people’s bodies do without any trouble such as heart rate, breathing, digestion, etc. EDS is a connective tissue disorder that causes a mutation in your collagen, that is genetically inherited. My symptoms I have every day are severe dizziness, pre-syncope and fatigue which is why I sometimes use a wheelchair or walker to help me get from place to place. The hardest part is the fact that I don’t look sick on the outside, so it is hard for people to understand what I’m going through. It is why these diseases are often called invisible illnesses. I am still able to take classes, continue theatre, and work, however those things sometimes have to be adjusted to my abilities. I am posting this to not only share my story but to raise awareness about invisible illness’s just like mine.
Always remember to never give up and dream big, because YOU GOT THIS.💙✨