6+ years ago, before the progression of my disability, I had a boots and chucks collection that was pretty badass. It rivaled few. I was never one to spend money on clothes or accessories or makeup, but damn did I love a good pair of studded boots. They were the main pillar of my outfit and expression. Autumn made me so so excited bc, even though I wore my boots year round, autumn was. the. season.
Fast forward slowly as my disability took over. The first to go were boots. Then sneakers. Then slides. Then sandals with a thick band. I can only wear flip flops now. Even in the snow. FLIP FLOPS. Year-round. Every day. I never wore those even when I could wear whatever I wanted. It's just not my style. But thanks to my erythromelalgia, severe contracture and disfigurements; I can't fit in them, can't have material touching my feet, and they trip me when I try to get from A to B without my chair.
Today I'm being honest about the sadness I have about this loss. For 6 years I've been bottling up all the pain and sadness my disability has brought to me. It's in part why I made this account. To finally be HONEST. To be VULNERABLE. To be AUTHENTIC..... real.....transparent....whole. To stop wrapping everything up in a pretty little inspirational bow and making it palatable to listeners. It gets hard man.
So here's my heart, on yknow, boots ;) You never knew they could be such a weak spot huh? ;)
#disability #disabled #chronicillness #chronicpain #ehlersdanlos #ehlersdanlossyndrome #EDS #hEDS #hypermobility #hypermobile #HSD #dysautonomia #POTS #mastcell #mastcellactivation #MCAS #MCAD #erythromelalgia #manonfiresyndrome #contracture #disfigurement #spoonie #spoonielife #zebrastrong #chronicillnesswarrior #shoes #boots #disabilityfashion
Sometimes people walk away from you not because you’ve done something bad. But because they don’t feel worthy of the good you have to offer.
Currently pet sitting this cutie! What a wonderful job, Netflix, chill and take care of Kitteh 😂! Nasty weather here in Winterpeg, but lucky for me I don’t have to go outside for 3 days. Ran out of cbd oil, and I’m definitely feeling it. Downtown abbey, tea with manuka honey, robax, and long magnesium salt baths are keeping me alive though, not to mention the most cuddly cat on earth lol. Animals are such a healing comfort. I really believe cats and dogs should be mandatory in hospitals and palliative care, even old folks homes! Something I’ve always been passionate about is introducing animals into prison, under strict supervision of course, look it up on YouTube, the stories of hardened criminals breaking down in tears is beyond moving. #animalsarehealing #infj #petsitting #catsofinstagram #winterpeg #downtonabbey #writersofinstagram #chronicillness #ehlersdanlos #edsawareness #fibromyalgia #cats #blackcat #netflixandchill #rainyday #introvert #artistsoninstagram
As time goes on, my legs become weaker due to my joints being “loosey-goosey” as the doctors call it (ok it’s just me who calls it that). I do physio and try to strengthen the muscles around my joints, but I’m on a regular schedule of exercising, re-injuring something, waiting to recover enough to exercise again, and then right back to the start. In a couple years I have gone from no mobility aids, to sometimes one, to almost always one, and now to sometimes two. I’m told I rock these mobility aids (which I totally do let’s be honest💁🏻♀️) but it really takes a lot of practice to be comfortable with them and to get used to functioning with them by my side all the time. Initially I didn’t really break out the two crutches unless my back was swollen af or my bestie was over and wanted to play around on them. But I’ve been trying them out more around the house lately in preparation for the days when my bones feel like they’ve been replaced with jello (it’s totally fine don’t be alarmed)(haha jk it’s awful). It’s been quite a learning experience figuring out how to use both crutches while doing things involving my arms. I usually get by using one and holding things with my other arm but I know I need to learn these skills on both crutches for the days when my options are either: A) use both crutches or B) lay in bed forever and ever until the end of time (realistically when Matt gets home from work & not the actual end of time). I’m a strong independent woman so I want to be able to get around my house while Matt is at work. So I practice with both. Sometimes my crutches are very helpful! Sometimes they frustrate me. And sometimes Matt finds them abandoned in weird places throughout the house where I’ve probably sighed dramatically and dropped them because my plate of cookies seemed more important. He then returns them to me and reminds me that I bought them for using, and they can’t help me when I’m in our room and they’re nestled in the empty space between our fridge and the stove. I KNOW THAT, MATTHEW. But cookies! Anywho, the struggle is real. Mobility aids are awesome and I bow down to them but also this is a huge ass learning curve & boy does it take practice.
"I CAN HELP YOU". After my appt w/ the neurosurgeon I'm in the lobby thinking, "Don't ball your eyes out bc there are other people around". I'm relieved, filled w/ a little HOPE, but also filled w/ anxiety. This is what is proposed; the Dr will remove all the hardware from my skull-L2 bc the screws/rods in me now aren’t strong enough to hold me up since I'm tall & skulls aren't supposed to move like mine is. Currently there are multiple screw & rod issues. How do we get my spine aligned? Basically he will separate my spine. A vertebrae will be removed so he can bend my spine back into anatomical alignment. After that, stronger rods/screws will be placed all at once. That's approx. 88% of my spine being worked on at once; 21 vertebrae & my skull. I'm horrified; as he said it's a huge surgery. The benefits outweigh the scary risks. My posture is worse than I thought. I'm bent in a C shape. My torso is shifted L. My head is turned & shifted L. It will get worse, as it has been. Definitely explains the magnitude of symptoms. The Dr. said my lumbar & SI joints must be causing me a ton of pain from holding myself back so I can see forward. Validation. I don't have much else to say. That's the short & sweet condensed version. A lot to think, process & digest moving forward. I'm thankful, I believe things will get better. This will be surgery number 35. Permission to share. I now know there IS somebody out there w/ a spine similar to mine. That's the beauty of social media. It can connect people from all walks of life. *
#ehlersdanlos #ehlersdanlossyndrome #mayoclinic #spinesurgery #neurosurgery #invisibleillness #chronicillness #strong #anxiety #spooniestrong #spine #surgeey #butyoudontlooksick #chronicpain #fusion #scoliosis #instability #hypermobilitysyndrome #surgerylife #hospitallife #medical #believe #blessed #allthingsarepossible #neurology #spoonielife #doctor #scaredtodeath #healthjourney #survivor
Had a great time at Michelle’s baby shower!!! 🍼🎈🎀🎁💗
well the verdict is in, the reason I’ve been having such intense pain in my right knee (as well as the nearly constant popping-and-locking) and an extremely weak leg altogether as a result of that, is because at some point in the last year, I completely tore my ACL and one meniscus. And I’ve been walking around like this for almost a year. So that was pretty surprising, since they were only looking for a torn meniscus. Any kind of repair surgery would be pretty much pointless for someone like me who has EDS, so I’m restarting physical therapy in the hopes of not repairing my ACL but getting the muscles in and around my knee strong enough so that I don’t need an ACL. I’m postponing my upcoming surgery until January, when I’ll hopefully be a little bit stronger. we’ll see! the video at the end is lulu before the appointment for the MRI results when I brought out her vest 😂 she is seriously the love of my life 💖
I normally try to just delete hate comments but I really wanted to shared this because this is just beyond cruel. Don’t type something like this and expect people not to get upset. What’s sad is today I actually felt really confident in myself and how much weight I have been losing :( #juvinilearthritis #eds #ehlersdanlos #chronic
Things that exhaust me;
Standing for a long time
Walking a long time
Being around people for too long
People unexpectedly being loud in my quiet places
Basically just existing
#eds #ehlersdanlossyndrome #ehlersdanlos #heds
Struggling with chronic illness is hard enough without figuring finances in. Now imagine being young, disabled and unable to work for the funds you desperately need for expensive medical tests and treatments. That’s what @kk.manning
(pictured) is dealing with right now. She’s an absolute doll with a huge heart!! Please check out her feed with the link to a go fund me account her friend has set up. Thx 🙏🏻💛
#chronicillness #disabled #eds #ehlersdanlos #spoonie #spoonielife #zebrastrong
No. 2: I dislocated my wrist and am in a brace/sling!
TL;DR: My wrist dislocated in June and has not recovered, but continued to sublux and re-injure with normal activity. I had xrays ad saw ortho. I had an MRI yesterday and have an ortho follow-up with a surgeon on Oct 1st to talk options.
The full saga up until now is in the comments below.
It's all taken a pretty good toll on my mental and emotional health: not working with my old class, feeilng like I can't even properly communicate in ASL, everything just feeling so much harder, constantly getting asked "what I did" and given wishes of "healing up soon", and the discomfort and pain. It's hard. Progression of my illness is always hard on me. But the restriction of my hands and the realization of how bad they are already is really really tough...
Image 1: Lilan is laying on their bed with a black wrist and thumb brace on their left arm; they are smiling at the camera while Gracie and Harry are flailing behind them.
Image 2: Lilan is laying on their bed with light bees compression sleeves on both arms and be beige with white velcro wrist and thumb splint/brace on their left arm; Harry is asleep in their left arm pit under their left arm and Lilan is smiling at the camera.
Images 3 & 4: Lilan's left arm; they have on a custom-made light beige wrist and thumb splint with white Velcro.
Images 5 & 6: close-up selfies of Lilan; they don't have any of their facial piercing jewelry in; their hair is in braids and they are smiling and then sticking their tongue out at the camera.
#health #myhealth #disability #queerdisabled #transdisabled #chronicillness #invisibleillness #butyoudontlooksick #medicated #eds #ehlersdanlos #ehlersdanlosyndrome #progressiveillness #degenerative #gotcollagen #dislocation #wristinjury #brace #splint #MRI #mentalhealth #mymentalhealth #depression #anxiety
I'm incredibly blessed with awesome friends and family, and the ability to enjoy life even though I'm sick (and sometimes even forget about the sick part!). I had a really hard week but today I didn't even think about it. What a fun day hanging out and playing mini golf 😊
🖤 Silver linings🖤
New post on blog today, link in bio✨
Please feel free to subscribe/ send a message/ leave a comment💗
Seeing the Glenfinnan Viaduct (AKA Harry Potter Train) was a bucket list moment. Having the best time in bonnie Scotland with this bonnie lass 🚂
What are your go to food options on days you can not manage to cook or prepare food? 💕
Patient can not feed oneself most days is playing like a broken record in my head. The reality is during the days I can barely get to the kitchen let alone make something to eat and healthy at that. Back in Wisconsin most days all I ate was a little snack and dinner. This is not good for anyone let alone with chronic illness. My mom starts work Monday and I keep thinking wow..I am back to patient can not feed oneself most days. Well I never left that but my mom helping me was great. My husband use to give me lunchboxes of sandwiches because I could not walk down the stairs. That was before I had an instagram. I hate having to ask for help in this way from my family. I am nervous but I need to figure out options besides a piece of fruit. More substance. I want to start meal prepping once everything settles. And we have a microwave so I want to prep a bunch to reheat through out the week. For now without meal prep and for when I do meal prep all ideas are welcome! Also working on being okay asking for help when I can not manage to get food because my body needs fuel to survive and thrive! .
#spoonielife #chronicillnessblogger #chronicpain #chronicillness #medication #heds #ehlersdanlossyndrome #chronicbackpain #herniateddisc #ehlersdanlos #holisitichealth #holisticmedicine #legalizemedicalmarijuana #marijuanamovement #mentalhealth #nevada #lasvegas #lvcannabiscommunity #medicalrefugee #risingzebra
Let it all hang out! 🤪
Nod if you wear a mask more often than not? Guilty 👈🏻
You’re not alone and it’s completely normal. We actually need that mask. How else would we make it through the day without going bonkers?
It’s super important to take it off, along with your shoes, when you get home so you can be your weird af self and not be judged for it.
This is why it’s healthy to have friends around you who allow you to wear your mask less; to slowly peel it off a bit at a time as you feel more comfortable with letting them see the real you. ⠀⠀⠀⠀⠀⠀⠀⠀⠀
Whether those friends are irl or online doesn’t matter - trust is trust. ⠀⠀⠀⠀⠀⠀⠀⠀⠀
It’s difficult to take off your mask on social media but not impossible. Project Patchwork is a safe place filled with women who get you because they have worn the most elaborate masks 🎭 and hung them up.
Ready to hang yours on your wall?
🍴Je m'essaie au semi meal prep, organisation qui consiste a préparer ses repas de la semaine sur un jour, de manière à pouvoir manger de vrais plats équilibrés même lorsqu'on n'a pas le temps et/ou l'énergie pour les préparer.
En étant a la maison la plupart du temps, je ne voyais pas trop l'intérêt ; pourtant, si j'ai effectivement du temps, j'ai rarement l'énergie. L'autre réticence que j'avais concernait la conservation des aliments et surtout la perte des vitamines une fois ceux ci coupés et cuisinés. Mais avec du recul, je pense qu'il vaut mieux manger des légumes moins riches de nutriments que pas de légumes du tout et se rabattre sur un truc préparé.
Je ne cuis pas d'avance car la cuisson ne me pose pas de soucis, c'est plutôt l'épluchage et la coupe des légumes. Donc j'anticipe sur 3 repas prévus + 1 joker : fenouil carotte cumin - curry de courgettes carottes - carotte râpées (beaucoup de carotte, mais ça rend aimable) - des courgettes a glisser dans n'importe quel plat. 🥄 Et surtout pour économiser mes cuillères et limiter les blessures, je coupe tout au robot. [J'épluche parce que la lignine présente dans la peau est très indigeste pour mon ventre fragile. Oui, une bonne partie des nutriments est dedans mais mieux vaut des légumes épluchés que pas de légumes du tout 😉 ] 🔸Avec ou sans énergie limitée, cuisiner en plus grande quantité est quelque chose de vraiment intéressant pour les jours de flemme/de fatigue.
Mais en cas de pathologie chronique qui fatigue beaucoup, ce genre de pratique peut être un début de solution pour se nourrir correctement.
Adepte du meal prep? #healthyrecipe #healthychoices #eatclean #healthy #recipe #diet #cleaneating #health #cleaneatingdiet #vegetarian #realfood #lifestyle #veggies #chronicillnessdiet #chronicillnesslife #chronicillnessawareness #chronicillness #spoonie #spoonielife #spooniewarrior #eds #ehlersdanlos #endometriose #pain #chronicpain
I’m too impatient to let my hip heal really. So stupid me decided to grab some physio rubber stretch bands and hurt myself. Now my hands smell like rubber and I can’t get the smell off 😂. Internet says I have to wait 2 months till its healed and really I don’t want to wait that long hahah. But I know that I’ll only make it worse by pushing myself. So rip.
#ehlersdanlos #ehlersdanlossyndrome #hypermobility #spoonie #hip #chronic #chronicpain
AUTISTIC SENSORY IMPACTS SOCIALISATION:
I hope your having an enjoyable Saturday.
Socially it's nice to see people. Sensory it's a bit of a overwhelming nightmare. I'm spending time at my Parents house for a meal with a few guests.
I'm very sensitive to the yellow light at my Parents, the music, conversation the laughter & my happy chappy but very noisy son playing with my niece.
I blame my low energy making my sensory input more painful & therefore less bearable.
The rest of tonight will involve:
☆ regulating by sitting in the dark middle room away from the music & lights for spots of time ☆ gentle stim dancing, hand stimming to create output to block ALL THIS INPUT ☆ avoiding my mother's invites to drink achohol (it's not good for me health wise) ☆ saying our goodbyes at a sensible time (9pm) and when more guests arrive (sensory wise it will be too much for me to navigate) ☆ at home watch an episode of Stranger Things (studying Eleven and Wills Family as Autistic Analogies) ☆ a Sensory Bath with candles, Epsom & dead sea salts, plants, crystals & music
Remember to do the things you love at the pace that enables you to participate & stay balanced (not overwhlemed)
#autisticaccessibility #sensoryprocessing #sensoryoverload #overwhelmed #sensory #sensoryprofile #autistic #ehlersdanlossyndrome #ehlersdanlos #chronicfatigue #fatigue #burnout #yourownway #yourownpace
Hey everyone! As you know things have been crazy and stressful. I fall into these spirals that are so hard to escape from. For the most part I am happy and so excited that the strain I loved still helps. After May when we came last time I got a new MRI that showed another herniation, a bone spur between my existing herniated disc and compression fracture and arthritis in my Lumber spine. Also occipital neroulgia diagnosis. Part of me has been scared that what if I can no longer get the pain to at least a 5 but I felt it and I know what the future holds. Pain relief! I am still nervous and guilty about finances with bills pushing closer to the due date. I am also so scared about going to get my stepkid. I have not been grocery shopping alone in at least a year with my injuries let alone flying there and back. Good news is her step dad is picking me up after the 4 hour flight to rest then 5 hours after we get on the plane to bring her home for her first visit. I am scared of the pain of the day and flight and also nervous of how the hell are we going to get me enough medicine to be able to do stuff. We have sat at home for years. I refuse this time. Not the first time and I want to show her that this move is worth it. She is only 13 and is so understanding of why we moved. We asked her first she said why would I want you to stay in this state if Sarah suffers and doesn't have too. And then of course came I'm going to college in California! Lol I just want her to see me a bit better than I was. 💕 Good news is I got some CBD to sample! I will share with you all soon when I know how it works but super excited for this extra pain relief and so far CBD lotion is helping a bit. Perfect for the plane. 6 days I will be embarking on my all day 5am to 10pm excursion. Im nervous but it is all worth it and I can do this. I made it 26 hours in a car. I can do this some how....some way. .
#spoonielife #chronicillnessblogger #chronicpain #chronicillness #medication #heds #ehlersdanlossyndrome #chronicbackpain #herniateddisc #ehlersdanlos #holisitichealth #holisticmedicine #legalizemedicalmarijuana #marijuanamovement #mentalhealth #nevada #lasvegas #zebrastrong
one of the biggest downsides to having a chronic illness is that you learn to hide your feelings. you learn that people don’t want to see pain - physical or emotional. and when you have physical or mental health issues, you learn that to avoid judgement you should nod and laugh through the pain or sadness or grief you feel. hiding your emotions becomes second nature. well, I want us - you, reading this - to stop. stop pretending. stop acting. stop being inauthentic. we will never change the conversation regarding our experiences if we do not start being honest about our feelings. it’s okay to not be okay. ❤️
Did cardio and maybe half my lift before I ✌🏼’d out yesterday because I wasn’t feeling it. Energy levels are essentially nonexistent right now but I’ll keep going through the motions and doing my frickin best. Enjoy your weekend & go hawks. 🖤
I really want to train again but can’t since I subluxated my hip