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Feeling terrible, yesterday I only ate 230 calories and today I've eaten 250 so far πŸ˜•I stepped outside to see this miracle sunflower (that we never planted) in bloom. I also feel like it's cheering me on with its little arms. I will get through this πŸ’ͺ#enjoythelittlethings #findthepositive #positivity

Somebody turns two tomorrow πŸ‘€ Wonder who it is?!? πŸ‘†πŸ˜»

Slow-motion makes everything look cooler. 😎

Believe it or not, two hours before this was taken I was bent over a toilet in the dark because of a terrible migraine attack. The thing about having multiple chronic illnesses is that it's not just something, it's MULTIPLE somethings, constantly. Let's take May for example; today marks migraine day 214. I had a mental breakdown, still recovering from a post traumatic stress disorder episode and relapse with anorexia. To top it all off, my MHE has become a problem in my ankle; all month massive bruises have been blooming all over my ankle...and new tumors have started popping up beneath them (so far I found 3). I've been trying to not walk as much today, but I'm thinking a call to the surgeon may be in the near future. And this is a typical month for me; It's exhausting but that's life with comorbid chronic illnesses; you have no days off. You just keep pushing and keep fighting and keep powering through the day until you make it...then rinse and repeat. What does a typical month with comorbid illnesses entail for you? Leave a comment below, and let's talk! πŸ’œ

~We may never know the cause, but we can treat YOU~
My first appointment with the neurologist at Johns Hopkins went well! He had so many ideas! He is going to do some tests for small fiber neuropathy and various autoimmune conditions, but his main focus is on decreasing pain (my main goal)!! He said that he isn't treating a diagnosis, he's treating me and wants to find a way to get some relief after years of pain! The plan as of now is that he is going to talk to a few of his colleagues and Dr Abdallah and hopefully I will be back down in a couple weeks to meet with a Neuro pain management guy and do another test. I also saw PT and OT today, which was a bit awkward as an OT student, but they were both really nice and understanding! It was a long, but successful day!
#strongerthangastroparesis #tubie #GJtube #posturalorthostatictachycardiasyndrome #POTS #dysautonomia #gastroparesis #EDS #ehlersdanlossyndrome #amplifiedmusculoskeletalpainsyndrome #AMPS #CRPS #fibromyalgia #chronicpain #invisibleillness #butyoudontlooksick #spoonie #spooniestudent #spooniestrong #spoonielife #chronicallydetermined #chronicallyhopeful #strongerthanAMPS #strongerthanPOTS #peoplehopetribe

@ church today and have work at 3. Not having a good day... POTS is flaring up and I feel like I'm gonna barf. #disabled #spooniestrong #sickgirl

Check out my new shirt, y'all! I'm so excited to wear this out and about and really make people start thinking....we CAN make a difference...we CAN start opening the eyes of the world around us and helping them realize how MANY of us suffer in silence Every. Single. Day. (This is not an AD but if you guys want to get something like this I got it from @theunchargeables) 😁😘

#mentalhealth #mentalillness #chronicpainwarrior #chronicpain #chronicfatigue #arthritis #rheumatoidarthritis#chronicallyill #spoonielife #spooniestrong #spoonieblogger #spinalinjury #CRPS #ehlersdanlossyndrome #autoimmunedisease #mentalhealthawareness #mentalhealthrecovery #projectsemicolon #lymedisease #fibro #spondylolisthesis #depression #backsurgery #spondy #anxiety #panicattacks

GENETIC FREAKS... make yourselves known! We are proof that X-Men really do exist. I'm pretty sure that we should all be wearing spandex outfits & have an alter ego... or at least a lucrative career as carnies.
I'll be the contortionist. πŸ˜†
Without genetic mutants we wouldn't have rad things such as the The Secret World of Alex Mack (it was a 90's kids series, google it), the Ninja Turtles, or you know... evolution. So us rare biological miscreations are kinda important. 😜
Yes, our DNA oddities can render us with chronic pain and/or illness (no shit) & I admit we're well versed in the many reasons why a rare genetic condition sucks balls. πŸ‘Ž
But SURELY there are some upsides. πŸ‘
Superpowers that you can only attribute to your special lusus naturae status...
I'll go first.
My hypermobility syndrome means that I scratch every inch of my own back & have never had to stretch or warm up for yoga. I'm one proud freak of nature. πŸ™Œ
Give your fellow Spoonies a reason to giggle & regale us with some of the perks of being a genetic monstrosity. Share your genetic mutation & the superpower it grants you below. πŸ‘‡
#Genetics #Mutant #Genes #Genetic #Mutation #GeneticFreak #XMen #NinjaTurtles #EhlersDanlosSyndrome #ChronicPain #ChronicIllness #EDS #Neuropathy #EhlersDanlos

Yesterday I met with a doctor I hadn't seen before, and when he looked in my chart and saw that I had Addison's disease, he said "Oh, you have Kennedy's disease!" Oh. Right. I had forgotten that I have the same diagnosis as one of the most famous and beloved US presidents in history. "In thirty years of practice, I've only seen one other patient with Addison's," he said. I just smiled and said, "Oh, really? Wow." πŸ˜’ But I'm thinking to myself, is all this commentary supposed to make me feel special? Or...Is it supposed to make me feel inadequate? JFK managed to be president while living with Addison's disease, and meanwhile I struggle to maintain part time employment and eat three square meals a day. When stories about celebrities or other successful people are portrayed in the media and they talk about their struggles, their illnesses, and how they've overcome them, it can be inspiring. It can give us hope. But it can also be problematic because it creates this false idea that their life with chronic illness represents every patient's life with that same chronic illness. That if they can get better, everybody else should be able to get better too. And this just isn't true. Illness manifests in each person differently, even in patients with the same diagnosis. It can be tempting to compare yourself to others, measuring your "success" by how well you're coping with your illness in comparison to them, but THIS IS A TRAP! Your body is unique and intricate. Your experience is unique to you. You are the only one who knows what it's like to live inside your body. Don't let anybody tell you that your experience is invalid. Don't let anyone tell you that if you aren't getting better, you're just not trying hard enough. Because this is a lie. You have been dealt a crappy hand, and you are doing the best you can with what you've got. πŸ’–

I had to remind myself of this over and over again as I left that doctor's office. Comparing myself to John Freaking Kennedy πŸ™„πŸ™„πŸ™„


Queens always rise!! No matter the situation or your diagnosis...you rise. #Repost @lovelifelupus (@get_repost)
Day 28: The month is almost over. So many changes occur with us warriors throughout the month. Even throughout the day! And instead of complaining, a lot of times we tend to deal with our issues whatever they may be. That may not always be the best thing for us to do, but we do whatever we need to do to turn pain into power! πŸ’ͺπŸ½πŸ’œπŸ’œπŸ¦‹ #repost #lupie #lupussucks #lupusbeauty #lupuswarrior #lupusstrong #lupusproblems #lupus #pain #power #blackgirlmagic #loveandspoons #spoonie

These past two days have been nothing but hell for me. Argument upon argument with my mum, hurtful words thrown back and forth and feelings that are scary as fuck. I've thought about suicide. Usually it's just a passing thought. It's scary to say it out loud and feel like you might actually mean it. Depression is a black hole of nothingness. It's cold and scary like you wouldn't believe. #spoonie #spoonies #spoonieslife #spooniestrong #spoonieunite #mentalhealth #ocd #trichotillomania #obsessivecomplusivedisorder #anxiety #panicattack #panicattacks #panicdisorder #depression #suicide #chronicillness #chroniclife #chronicallyill #chronicallyfabulous #lifewithchronicillnessΒ 
#spoonsforfelicityrose #fariesforfelicityrose

Really good article.

Slow-motion makes everything look cooler. 😎

hey fellow spoonies or anyone in the medical community, i have a question for you guys... so for the past few weeks my eyes have look beaten up. first photo is the other day when i was wearing coverup and pressed powder, and the second photo is today's eye, with that weird yellow tinge to it. it looks like a bruise i'm guessing, like when a bruise is almost healed and starts to turn yellow? i guess my question is how do i look not dead without wearing makeup? like, cold compresses? or? because it makes me look ill and my undereye makeup is smearing off as my eyes are watering a lot. also yes my eyes are like grey today haha so enjoy that shift in eye color. thanks you guys. xx

Comment what state you're from! It's for a project!πŸ₯„πŸ₯„πŸ₯„ #spoonie #spooniestrong #spooniesupport #spooniesunite #project #spoonieproject

Somebody turns two tomorrow πŸ‘€ Wonder who it is?!? πŸ‘†πŸ˜»

My girl has been admitted to the ICU and has remained there due to her relentless Anaphylaxis and also critically low potassium as well as an untreated strep infection where she has reacted to nearly every antibiotic tried. And the doctors are slowly running out of options and answers. But, I still can bring her and her nurses smiles and laughter amidst the chaos and confusion! She's had so much epinephrine in the past few days her heart has begun to have an adverse reaction of dropping below 30bpm and giving everyone a good scare as well as tiring out my girl. Including the 20bpm it dropped to in the emergency transport to ICU. Despite it all...together we remain strong and together we still fight! πŸ‘ŠπŸΌ #chronicillness #invisibleillness #notalldisabilitiesarevisible #pots #posturalorthostatictachycardiasyndrome #bradycardia #dysautonomia #gastroparesis #mastcellactivationsyndrome #mcas #anaphylaxis #severeallergies #drugallergies #ehlersdanlossyndrome #ehlersdanlos #chronicpain #chronicfatigue #chronicmigraines #polycysticovariansyndrome #idiopathichypersomnia #spoonie #medicalalertdog #servicedogintraining #servicedogteam #servicedogtraining #spooniestrong

πŸ‘©πŸ»β€πŸ³My "Hall of Fame" Cookbook collection! These are well-loved as I use these all the time! πŸ™ŒπŸΌ.
πŸ‘©πŸ»β€πŸ³ @healthygflife The Healthy Gluten-Free Life is the best #eggfree Cookbook out there! Plus it is #glutenfree #soyfree & #dairyfree πŸ‘πŸΌπŸ‘πŸΌπŸ‘πŸΌ.
πŸ‘©πŸ»β€πŸ³ @againstallgrain Against All Grain is the best cookbook for completely #grainfree cooking. Plus it's #dairyfree ! πŸ‘ŒπŸΌπŸ‘ŒπŸΌπŸ‘ŒπŸΌ.
πŸ‘©πŸ»β€πŸ³ @bulletproof The Bulletproof Cookbook is the book for a #ketogenicdiet or #lchfdiet . The recipes are fast and incredibly tasty. Plus, #glutenfree and hands-down the best #veggierecipes ever! πŸ™ŒπŸΌπŸ™ŒπŸΌπŸ™ŒπŸΌ.
πŸ‘©πŸ»β€πŸ³I just got my new @drterrywahls The Wahls Protocol Cooking for Life Cookbook so I'm excited to try some new #healthyrecipes This month! πŸ˜‹πŸ˜‹πŸ˜‹.
❓What is your favorite Healthy recipe book⁉️.
πŸ”πŸ”πŸ”Be sure to follow @autoimmunefoodie For daily recipes and #weeklymenu Inspiration! πŸ™πŸΌ.
#autoimmunefoodie #biohackingbosslady

Feeling terrible, yesterday I only ate 230 calories and today I've eaten 250 so far πŸ˜•I stepped outside to see this miracle sunflower (that we never planted) in bloom. I also feel like it's cheering me on with its little arms. I will get through this πŸ’ͺ#enjoythelittlethings #findthepositive #positivity

i keep having these pulsing sharp headaches help wot do

Today I had a day. β€’
I woke up with a swollen clavicle and a really, really painful (more so than usual) shoulder. It hurts when I breathe in deeply, cough, hiccup, hold anything heavier than a feather. I dunno, it feels wrong. It probably subluxed(sublaxated? I never knowπŸ€”) while I was asleep maybe it caught a nerve or something. I dunno, I just couldn't be bothered sitting and waiting in A&E for hours today. I'm too tired, I'm not dying and my arm isn't dangling limp at my side so if it's still the same tomorrow I'll go get it X-rayed.
I'm so bloated 😩 I ate about half the dinner my mum brought me but I only ate one of the roast potatoes (my faves😭) and mostly just ate the mince and veg to try fill up on something that'll bloat me less 😫
Despite all that, I made it into a fairly positive day ✌🏻️ I painted my nails and toenails, plucked my eyebrows, had a bath and finally washed my greasy hair(πŸ˜…) I wanted to be more productive but I just feel so exhausted and my dizziness and tinnitus are here full force today. Annie's away so I don't even feel guilty neglecting the housework so that's definitely a positive 😁
I'm just going to spend the evening relaxing and watching Netflix. Hoping for an early night and for this shoulder to be normal again in the morning, fingers crossed πŸ€ β€’
Hope everyone's doing ok 😘
#chronicpain #chronicfatigue #chronicillness #chronicillnesses #invisibleillness #butyoudontlooksick #pots #potssyndrome #posturalorthostatictachycardiasyndrome #potsie #fibromyalgia #ehlersdanlos #ehlersdanlossyndrome #jointhypermobilitysyndrome #undiagnosed #spoonie #spooniestrong #spoonielife #selfcare

@ church today and have work at 3. Not having a good day... POTS is flaring up and I feel like I'm gonna barf. #disabled #spooniestrong #sickgirl

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