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After such a long stay at the hospital I am glad to be home. What we know: it seems to be more related to malabsorption. I eat and yet my body isn't taking in any nutrients. The vitamins and minerals I am lacking are having a direct affect on my heart. What we don't know: what is causjng the malabsorption. What that means: more tests to find out why. #health #invisibleillness #chronicillnesscommunity #chronicillnesslife #chronicillnesssupport #chronicallyill #chronicillnessquotes #spoonie #spooniewarrior #chronicillness #spooniesupport #spoonieproblems #chronicillnesswarrior #butyoudontlooksick #pem #spoonielove #spooniesunite #spooniefriends #survivingchronicillness

It's exhausting living with chronic illness and daily pain in your body. When all you want is relief, you scour the internet and look for answers everywhere. Darling, the real answers are already here, waiting for you to hear. The answers you seek, in most cases, are within your body. It's normal to cope by tuning out, but now you're ready to heal by tuning in. 👂Try this right now. Place your hand over your heart. Feel your body's warmth and your heartbeat. Notice that you are alive! Take 3 slow breaths. Now ask, "What do I need right now (to feel whole and at peace, for example)? ❤️Maybe what you need is to feel safe so ask that. "What do I need to feel safe right now?" Or maybe you want to feel joy. "What do I need to feel connected to joy right now?" Women delay the chance to ask within and give themselves permission for what their body wisdom asks for. Don't delay! Ask > Listen > Respond! 👏 It takes time to build your inner listening skills and to develop a vocabulary for what you hear in response. Stick with it. I'm here to help guide you. What do you think about giving this a try? Say "YES" in the comments if you think this is a healing practice. #selfhealing #womenshealthcoach #mindbodyhealing #mindfulnessmeditation #mindfulnesspractice #chronicpainwarrior #chronicpainrelief #chronicpainsucks #chronicillnesswarrior #butyoudontlooksick #invisibleillness #spooniewarrior #chronicallyill #chronicillnesslife #spoonie #invisibledisability #chroniclife #autoimmunedisease #dysautonomia #ehlersdanlossyndrome #endometriosis #fatigue #fibro #lupusawareness #lupuswarrior #migraine #multiplesclerosis #zebrastrong #pelvicpain #vulvodynia

I’m going to be honest now, I’m having a shit time recently. Reason why there has been no different outfit pics is that I haven’t been out since Christmas Day because I’m petrified. My head is really doing its job and hating me. But I’m still here fighting. Hitting my 10k milestone made me think I was good enough for something. Now I’m fighting the fatigued, I’m gonna still fight. #bpd #mentalhealth #schizoaffectivedisorder #socialanxiety #depression #bipolar #anxiety #influencer #spoonie #influencermarketing #invisibleillness #discoverunder10k #bloggersunder10k #followtrain #followforfollowback #chronicallyill #mentallyill #chronicpainwarrior #spooniewarrior #youdontlooksick #recoveryaccount #mentalhealthrecovery #antipsychotics #chronicpain #mentalillness #psychosis #yourstorymatters #mentalhealthawareness #mentalillnessfeelslike

Increase Vitality, Vigor, and Energy! Revitalizing libido booster 'AndroMax' by @vitasciences . Order now with our 100% no questions asked money back guarantee return policy, to ensure you can try our product totally risk free. . www.vitasciences.com . Order by phone: 1-877-212-7282 . #healthier#chronicfatigue#spooniewarrior#letsgethealthy#healthliving

Kind of a stupid statement when living with chronic illness - but there is something true in it. Wealthy people get wealthier by seeking out opportunites to make more money. And we can pursue new avenues for our health, as well. It might be a new treatment option, or it might be something simple such as seeing to your nutrition or finding a way to move your body without making it flare up.⠀⠀⠀⠀⠀⠀⠀⠀⠀ --⠀⠀⠀⠀⠀⠀⠀⠀⠀ -⠀⠀⠀⠀⠀⠀⠀⠀⠀ -⠀⠀⠀⠀⠀⠀⠀⠀⠀ -⠀⠀⠀⠀⠀⠀⠀⠀⠀ -⠀⠀⠀⠀⠀⠀⠀⠀⠀ -⠀⠀⠀⠀⠀⠀⠀⠀⠀ -⠀⠀⠀⠀⠀⠀⠀⠀⠀ -⠀⠀⠀⠀⠀⠀⠀⠀⠀ -⠀⠀⠀⠀⠀⠀⠀⠀⠀ -⠀⠀⠀⠀⠀⠀⠀⠀⠀ -⠀⠀⠀⠀⠀⠀⠀⠀⠀ -⠀⠀⠀⠀⠀⠀⠀⠀⠀ -⠀⠀⠀⠀⠀⠀⠀⠀⠀ -⠀⠀⠀⠀⠀⠀⠀⠀⠀ -⠀⠀⠀⠀⠀⠀⠀⠀⠀ -⠀⠀⠀⠀⠀⠀⠀⠀⠀ -⠀⠀⠀⠀⠀⠀⠀⠀⠀ -⠀⠀⠀⠀⠀⠀⠀⠀⠀ -⠀⠀⠀⠀⠀⠀⠀⠀⠀ -⠀⠀⠀⠀⠀⠀⠀⠀⠀ -⠀⠀⠀⠀⠀⠀⠀⠀⠀ -⠀⠀⠀⠀⠀⠀⠀⠀⠀ -⠀⠀⠀⠀⠀⠀⠀⠀⠀ -⠀⠀⠀⠀⠀⠀⠀⠀⠀ -⠀⠀⠀⠀⠀⠀⠀⠀⠀ -⠀⠀⠀⠀⠀⠀⠀⠀⠀ -⠀⠀⠀⠀⠀⠀⠀⠀⠀ -⠀⠀⠀⠀⠀⠀⠀⠀⠀ -⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ - #fibrowarrior #fibromyalgia #fibro #chronicfatiguesyndrome #chronicfatigue #spoonies #spoonielife #spoonieproblems #hashimoto #hashimotos #hashimotosdisease #autoimmune #autoimmunity #flareup #invisibleillness #sickandtired #sickandtiredofbeingsickandtired #sickandtiredofbeingsick #spoonie #spoons #fms #invisibleillness #spooniewarrior #depressionandanxiety #fatasses #fatty #fattygirl #fibromyalgiaawareness #chronicpain #chronicfatiguesyndrome

Want some free Chargie gear? Heading over to our website and check out our giveaway! -CJ ------------------------------------------------ 🌟WIN unique chronic illness clothes from the Unchargeables shop! Link to giveaway in bio. ------------------------------------------------ #chronicillness #chronicillnesswarrior #chronicpain #chronicpainwarrior #migraine #fibromyalgiaawareness #spoonieproblems #spooniewarrior #chroniclife #autoimmunedisease #chronicillnessawareness #anxietywarrior #sicklife #disabledandcute #invisibleillnessawareness #disabled #zebrastrong #spooniesunite #raiseawareness #butyoudontlooksick #disabilityawareness #invisibledisability #chronicpainwarrior

😔One of the many tests in my near future i hate test exspciely when it comes to #crps/rsd #repost @complextruths_crps_nonprofit (@get_repost) ・・・ 🔥 Follow @ComplexTruths_crps_nonprofit to learn more about Complex Regional Pain Syndrome (CRPS) which is a neurological condition of the Central, Autonomic, Sympathetic & Enteric Nervous Systems that causes severe pain and can happen to anyone, at anytime, after any injury. CRPS can spread to other limbs through the Sympathic Nervous System. . . Learn more @ www.ComplexTruths.org/pain . . QSART, is an acronym for (quantitative sudomotor axon reflex test). QSART testing measures the part of the Autonomic Nervous System that controls the Sudomotor function and (aka., the body's ability to sweat). . . Sudomotor function is one of the major functions that is impacted by CRPS and is one of the diagnosis criteria that is set forth by the IASP. . . To understand if QSART testing is definitive for CRPS visit our website at the link below: . . Click on link in bio and choose the button with "QSART TESTING" http://complextruths.org/what-is-crps/diagnosis/qsart/ . . Quick Facts are not intended for medical advice. . . Set2 #complextruths #crpstruth #phoenix #crps #rsd #rsds #doctor #crpstype1 #crpstype2 #spoonies #spoonielife #spooniesupport #spooniewarrior #painsomnia  #spoonie #thespooniesisterhood #chronicillnesswarrior #chronicillness #chronicfatigue #disability #spoontheory #invisibleillnesswarrior #invisibleillnessawareness #chronicillnessawareness #chronicpainlife

😔One of the many tests in my near future i hate test exspciely when it comes to #crps/rsd #repost @complextruths_crps_nonprofit (@get_repost) ・・・ 🔥 Follow @ComplexTruths_crps_nonprofit to learn more about Complex Regional Pain Syndrome (CRPS) which is a neurological condition of the Central, Autonomic, Sympathetic & Enteric Nervous Systems that causes severe pain and can happen to anyone, at anytime, after any injury. CRPS can spread to other limbs through the Sympathic Nervous System. . . Learn more @ www.ComplexTruths.org/pain . . QSART, is an acronym for (quantitative sudomotor axon reflex test). QSART testing measures the part of the Autonomic Nervous System that controls the Sudomotor function and (aka., the body's ability to sweat). . . Sudomotor function is one of the major functions that is impacted by CRPS and is one of the diagnosis criteria that is set forth by the IASP. . . To understand if QSART testing is definitive for CRPS visit our website at the link below: . . Click on link in bio and choose the button with "QSART TESTING" http://complextruths.org/what-is-crps/diagnosis/qsart/ . . Quick Facts are not intended for medical advice. . . Set2 #complextruths #crpstruth #phoenix #crps #rsd #rsds #doctor #crpstype1 #crpstype2 #spoonies #spoonielife #spooniesupport #spooniewarrior #painsomnia  #spoonie #thespooniesisterhood #chronicillnesswarrior #chronicillness #chronicfatigue #disability #spoontheory #invisibleillnesswarrior #invisibleillnessawareness #chronicillnessawareness #chronicpainlife

Finn
(@meggyfinn)

3 Hours Ago

Let’s jump on that #10yearchallenge on this lovely Friday morning. This is the car selfie with Jack version. I can’t believe how much I have changed? Of course Jack is getting older, but oh man I am definitely not that 17 year old anymore 🙈💛 . . . . #family #youngmom #teenmom #tenyears #mom #imacoolmom #mothering #parenting #spoonieparenting #spooniemom #spoonie #spoonielife #spooniesupport #spooniecommunity #chronicillness #chronicpain #spooniewarrior #fibro #alt #alternative #alternativemom #altmom #altfamily

“That’s the funny thing about living. If you do it properly, you don’t know how the next sentence will begin.” ••• Because We Are Bad - Lily Bailey ••• Non-fiction, the true story of @lilybaileyuk ••• This is a book about OCD. By the age of 13, Lily was convinced she was bad. She has killed someone with a thought, spread untold disease and ogled the bodies of other children. Only by performing an exhausting series of secret routines could she make up for what she had done. Lily tells the story of her obsessions and compulsions that started from a young age. She also tells the story of how she recovered, through medication and therapy. ••• I loved this book. As a sufferer of OCD I could relate to a lot of her obsessions. It really told the hard truth of what living with OCD can be like. I am so pleased that I found this book, it has given me hope of recovery. Thank you so much @lilybaileyuk for putting your story in to a book, it has really helped many people!! 🧡

Ally
(@allygracemuir)

5 Hours Ago

Sometimes I'm just a girl, standing in front of her food asking it to love me as much as I love it. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Living with a chronic illness sometimes means having to give up certain things. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Goodbye, alcohol. Goodbye, caffeine. Goodbye, dairy. Goodbye, soya. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Some of those things have been amazingly easy to give up. Believe it or not. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ But some things are super hard. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ We meet again, gluten. Hello, old friend, wheat. Hiya, meat. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ It's really hard to restrict certain foods when you do really like them but your body, not so much. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ I'm finding sometimes though, it's more about balance and getting that balance right. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Has your illness prevented you from enjoying certain things?

Wide awake 3am again.... Yeah I’m switching X-Factor back to mornings instead of bedtime. Doubt I’ll get back to sleep cuz I’m wired and I have to be up in two hours for counseling anyways.

#10yearschallenge Dedicato a tutti i guerrieri stanchi, incompresi, senza speranza, senza futuro. Dedicato a chi ha gettato la spugna e a chi ha deciso di rimboccarsi le maniche e tentare il possibile. Dedicato a chi ha trovato sostegno nella battaglia e a chi invece è solo. Dedicato a chi ha paura, a chi ne ha avuta e a chi invece ha affrontato ogni situazione di petto. Dedicato a chi ha vissuto una giovinezza spensierata e a chi invece ha passato l'età più bella fra letto ed ospedali. I miei ultimi 10 anni sono stati difficili ma sorprendenti. Il 17 maggio 2009 è iniziata una battaglia che ho affrontato a volte su una sedia a rotelle, a volte zompettando con le stampelle e che oggi voglio continuare a combattere sulla mia moto... Un bel cambiamento eh? È una sfida vera e propria. Ma la paura non sparisce da un giorno all'altro. Qualcuno diceva che dai diamanti non nasce niente ma dal letame nascono i fiori... È successo qualcosa di simile. Quando si riesce a tirare fuori qualcosa di buono da tutto il dolore che ci piomba addosso, ci si sente invincibili. Ma non lo siamo... La paura serve a ricordarci costantemente che siamo vivi. Fa parte di noi, della nostra umanità, va rispettata e affrontata. Ci accompagna in ogni momento, è lei a farci crescere. Ma non può sbarrarci la strada, quello è fuori discussione. A qualcuno forse servirà una mano per capirlo, a qualcun altro una lezione... Qualunque sia la vostra battaglia, affrontate la paura a testa alta! Comunque vada, l'unico modo di perdere è non provarci affatto... Combatto ancora ogni giorno ma la buona notizia è che in 10 anni ho capito come farlo e dove trovare la forza. Con questo non ritroverò sicuramente gli anni persi ma non mi dispiace avere qualche ruga in più e fare quello che finalmente desidero senza farmi condizionare dalla paura o da chi ti dice che certe cose non le potrai mai più fare... (Continua)

Katie
(@team_rancor)

8 Hours Ago

🥄Spoonie Rant🥄 It’s so frustrating and angering to be trapped in a body that wants to cause nothing but pain, fatigue, anxiety and depression. My bad days are more abundant - Days filled with the constant electrical stabbing all over the right side of my face. Days of pain in my spine and my legs. My Autonomic Dysfunction is becoming more troublesome than it has been in the past - My hots and colds getting mixed up, my heart rate jumping and dropping out of no where and insomnia striking. 😞 I’m sorry about venting but I needed to get it out there. 🥄 The past couple of weeks I have felt more and more of not being myself. My energy is gone, I get strange random episodes of dizziness to where it feels like I’m on a boat - And, let’s not forget the rather frightening hallucinations at night and occasionally during the day. 🥄 Thankfully, I am seeing a new doctor tomorrow that’ll hopefully be my permanent general physician (we changed insurances because Kaiser Permanente was more of a hassle than help). 🥄 I’ve got high hopes that this year is going to be my year for real progress on my health - Especially since I’ll be having two, maybe three, decently major surgeries. Yup, hope. I constantly have to have hope. 🥄 #teamrancor #spoonie #spoonies #spoonielife #spoonieproblems #spooniesupport #spooniecommunity #spooniewarrior #spooniestrong #trigeminalneuralgia #occipitalneuralgia #chronicillness #chronicpain #invisibleillness #neuropathy #autonomicdysfunction #autonomicdisorder #autonomicneuropathy

Why is it so bright in this dark room??? -CJ ------------------------------------------------ 🌟WIN unique chronic illness clothes from the Unchargeables shop! Link to giveaway in bio. ------------------------------------------------ #chronicillness #chronicillnesswarrior #chronicpain #chronicpainwarrior #migraine #fibromyalgiaawareness #spoonieproblems #spooniewarrior #chroniclife #autoimmunedisease #chronicillnessawareness #anxietywarrior #sicklife #disabledandcute #invisibleillnessawareness #disabled #zebrastrong #spooniesunite #raiseawareness #butyoudontlooksick #disabilityawareness #invisibledisability #chronicpainwarrior

Another chapter in my book of life. 🦋At least I lived a freakin' lot while I could. 😜 ...It's not easy to stay positive while suffering so much. But how I try. 🌻💪🏼 ...And who knows what the future holds. A slow fight towards progress? Better days? A miracle cure? All we know is that life is a constant change. New breaths. New chapters. 💕 .. #spoonies #åland #toomanythoughts #reminiscing #spooniewarrior

What happened when a flash is used or I just close my eyes Tonight was another PT night. Since I am not the. Best at reporting all the happenings and everything, it is like a major interrogation every time. I did say that there was some numbness and loss of use again after the last appointment, but that is kind of an expected thing for me. Don’t really know what causes it but it happens if we take off the collar or if I do a lot of moving of my arms from the shoulder especially over the head. I think my PT is trying to get no numbness or loss of use after an appointment but I seriously don’t think that is going to happen if we are strengthening my back. Because today we cut back even more and there is still tingling and about 5% loss. He said next week we are going to focus more on my walking and balance (which is what we were doing before the program change). This is probably a better option as it is less likely to cause numbness (except for of my right leg if we do too much to my back - even disc sitting causes some tingling) and the first day of the new program went pretty bad (side effects wise) and if we keep cutting back to reside side effects there will be nothing left. Back crunching update: When I am upright my back pain is still pretty bad so I really haven’t been spending much time sitting up. But what I have noticed is that my Spey seems Tom want to slant to the right. Not leaning tower of Pisa style but more like stairs. (So my ribs and shoulders are “stacked up” and then my lower/mid back slants Over and my hips are over about 1-2 inches. I don’t think this is a problem but just something I noticed which could be contributing to the pain. Major side note: I am actually getting sick. Like a cold or something. I have been fighting it off for about 2 weeks but I think my days of not being in the active “sicko” phase are limited. Let’s hope this ends soo but doesn’t look like it as my mom and brother also seem to be getting something.

Don’t let a minor set-back discourage a year of possibility and positivity. #2019goals

Pam in her "autoimmune warrior" tee. Great picture! -CJ ------------------------------------------------ 🌟WIN unique chronic illness clothes from the Unchargeables shop! Link to giveaway in bio. ------------------------------------------------ #chronicillness #chronicillnesswarrior #chronicpain #chronicpainwarrior #migraine #fibromyalgiaawareness #spoonieproblems #spooniewarrior #chroniclife #autoimmunedisease #chronicillnessawareness #anxietywarrior #sicklife #disabledandcute #invisibleillnessawareness #disabled #zebrastrong #spooniesunite #raiseawareness #butyoudontlooksick #disabilityawareness #invisibledisability #chronicpainwarrior

(@mscrazylady)

12 Hours Ago

I’m tired. Tired of being sick. Tired of going to the hospital four days a week. Tired of doctors appointments. Tired of being tired all the time. The last couple weeks have been really hard on me. I’ve just felt so worn out and sore all the time. The reality of my illnesses has caught up with me all at once and I’m struggling to keep positive right now. I know that my smile will eventually return with a happier outlook and that this will get better but for now I will sit with the pain and acknowledge my struggle. I hope all you spoonies out there struggling too know you aren’t alone and that times like this will pass. Hugs to you all. . . . . . . . #spoonie #spoonies #spooniegirl #spoonielife #spooniestrong #spoonieproblems #spooniewarrior #spooniesisters #chronicallyill #chronicillness #chronicillnesslife #chronicillnesswarrior #chronicillnesswarriors #chronicillnesses #hospital #hospitallife

sometimes I have to surrender to the pain. it's always there, after all. I can't spend all of my time trying to get away, ignore it, escape it. at times I must surrender. submit. I grew up in a world that told me to best my body into submission. now I'm learning to honor it at every turn. my body knows best, you see. it knows what I need, even better than my mind does. better than my culture the stardust that makes up my body knows where we came from. pain is scary: I'm not denying that. but sometimes the idea of submission is scarier than the act itself. and I know that tomorrow, I will rise intact, connected, and stronger. submission is not giving in. it's just giving up control. . . . #bath #arthritis #arthritiswarrior #psoriasis #psoriasisawareness #psoriaticarthritis #chronicillness #spoonie #spooniewarrior #vsco #vscodaily #vscogood #thoughts #prose #pain #writing #journal #journaling

Have you guys heard of daiya cheese? My sister is vegetarian (practically vegan) and introduced me to it. I bought the cheese slices but I was skeptical. Turns out, it’s pretty good and it melts nicely. It’s also soy free. Give it a try if you are looking to cut back on your dairy intake . Have you tried daiya cheese? . . . . . . . . . #luroot #luroothealth #spoonielife #spoonieproblems #chronicdepression #spooniewarrior #chronicillness #healthyliving #dairyfree #livinghealthy #spoonielife #healthspiration #healthspo #selfcare #weightlossideas #weightlosstips #nursecindy #vegan #vegetarian #govegan #eathealthy #eatclean #yummy

What is something that brings you joy? This bud of life brought me joy as I sipped my coffee watching it soak up the warming rays of today’s morning sun. I imagined all that was happening right before my eyes - the movement of sunlight to food and deeper, more complex changes in order for the plant to grow and give life to the aromatic and visual beauty of a hyacinth. Life is constantly moving, changing, and growing around us each second of the day. The key is to slow down enough to observe it and appreciate it for what it is. Grab some joy from it and just be. (No filter used for the photo.)

Most people my age(42) head out to their local favorite bar to watch the basketball games, not me stuck to my bed in wicked pain shocking myself with hopes of even a slight drop in pain. The Sixers 🏀 & a Healthmate ForeverTens Unit Session is the nights plan oh joy... The life of chronic illnesses if people only knew.... . . #herniateddisc #herniateddiscs #bulgingdisc #bulgingdiscs #degenerativediscdisease #arthritis #ulcerativecolitis #inflammatoryboweldisease #asthma #cardiacarrestsurvivor #depression #anxiety #chronicpain #chronicillness #invisibleillness #mentalhealth #spoonie #spoonielife #spoonieproblems #spooniewarrior #chronicpainwarrior #chronicillnesswarrior #chronicillnesslife #chronicillnesses #chronicillnessblogger #painmanagment #tensunit #healthmateforever

Many moons ago. But you never stopped missing the people that impacted you so much. I constantly look around in awe of the amount of love there is in the world. Its amazing to see the little things in everyday life, to appreciate them, to honour them. We owe it to ourselves to be the happiest we can... plain and simple. Love comes is so many variations that there is never the right or wrong kind. Be the change, respect humanity and the humanity within us, because it is a beautiful thing that someone can imprint on your life and you on someone else. Connections and strength and love is formed. In the age of EVERYTHING being so fucking offensive. Step back. Get a lamp, lighten the fuck up 💡 Coming from someone who knows its never to late to be a giid cunt and not a prick ✌🏼❤ . . #inspiration #motivation #love #chronicillness #invisibleillness_ #chronicpain #chronicdisease #mentalhealthawareness #invisibleillness #spooniewarrior #autoimmunedisease #auntie #sarcoidosis #tbt #mentalhealthadvocate #mentalhealth #laughteristhebestmedicine #smilemoreithelps #familysupport #depressionawareness #invisiblecondition #raredisease #cardiacsarcoidosis #cfs #hypoxia #spoonielife #notalldisabilitiesarevisible #uk #scotland #mentalhealthblogger

New treatments are on the horizon and I’m feeling thankful 💫 sometimes all you need is that tiny little bit of hope 🌸🦋 #holdontohope

update number 2 my second cardiologist appointment was yesterday. both my previous echo and EKG came back clear, however my doctor suspected my chest cavity was misshapen and possibly pressing against the walls of my heart. after talking with the cardiologist yesterday he diagnosed me with pectus excavatum. it is not that noticeable when i’m standing, however when i lie on my back he pointed out that the gap between my ribs is off center and slightly shifted to the right, and the left side of my ribcage sticks out further than the right. basically like my whole ribcage was grabbed and turned to the right. (i’ll do my best to add a photo on my story). this could be the cause of my heart symptoms because it could be putting pressure on my heart and it can’t pump like a normal heart. the pressure between the two could also be aggravating my costochondritis and vice versa. as i get older the pressure could get worse and potentially even cause a valve to prolapse. i was referred to a cardiothoracic surgeon for an MRI and to see if surgery will be necessary to correct it. this morning an iRhythm ZioXT heart monitor was also placed on my chest to be worn for the next two weeks to track my heart rate, and record when symptoms take place. 1|17|19

(@mymedmystery)

16 Hours Ago

I believe we are experiencing a HEALTH CRISIS in our nation. I was shocked by how much my the cost of my insurance went up this year (over double in every aspect) and on top of that they are now denying most of my medications. I anticipated it being difficult to get my pain meds but denying blood thinners to a patient with AntiPhospholipid Syndrome (an autoimmune blood clotting disorder) makes absolutely no sense whatsoever. I have been hounding the doctor’s, pharmacy, and fighting with the insurance for a week now and still don’t have the medication I need. We seriously need to find a solution to fix out healthcare system - make it less stressful and affordable for everyone! #spoonieproblems #spoonielife #spoonie #antiphospholipidsyndrome #apsawareness #wtbday2019 #keeplifeflowing #healthcare #health #lupus #lupusflare #stress #stressful #lupuswarrior #pharmacy #insurance #healthinsurance #medication #meds #medications #spoonies #spooniestrong #spooniewarrior #invisibleillness

Bonding with other Spoonies that understand what it’s like to live everyday with chronic illnesses is something extremely special. The Spoonie community is really a giant family. So I wanted to make a sweatshirt that combined Spoonies + soulmates + sisters as a tribute to all of the incredibly strong women in our Spoonie community. With that being said, if you’re new to our community or have been a Spoonie for years and haven’t reached out to the our community but wanted to, feel free to message me anytime. 🎗🌈💞 Sweatshirts are unisex and come in multiple colors. 💘🥳 https://lazzaraawareness.com/product/sweatshirt-spoonie-soul-sisters/ 💜 💗💕🦄 Audrey 💌 Follow Lazzara Awareness for new weekly designs. 🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗 Un{der}diagnosed By Lazzara is an awareness apparel line created to bring invisible illnesses to the global stage. 🌎 🎗Portion Of Proceeds Goes To Charities That Support Invisible Illnesses https://lazzaraawareness.com #lazzara #spoonie #celiac #crohnsdisease #chronicillness #chronicpain #chronicfatigue #lupus #youdontlooksick #cysticfibrosis #hashimotos #rheumatoidarthritis #fatigue #raredisease #autoimmunewarrior #fibromyalgia #empowerthepatients #autoimmunedisease #invisibledisability #invisibleillnessawareness #invisibleillness #spoonielife #spoonies #spooniesupport #spooniewarrior #spooniemom #spooniestrong #dreambigbeunique #joycefornmo

......but seriously, I think my luggage exploded?!? 🤔🤭🤫 Apparently this is what unpacking is going to look like today. Wow. Upside, found my blow dryer. That was a success. Life is real. Life is messy even after fantastic trips. All this is well worth my time with my brother and his family. I love my Matty. Brothers are the best! ❤️ . . . #unpacking #travelblogger #brothers #keepinitreal #chroniclymedisease #spoonie #lymedisease #lymedontkillmyvibe #lymewarrior #lymediseaseawareness #spooniewarrior #depressionrecovery #mentalhealthawareness #anxietyrelief #lymeawareness #selfcare #thespooniesisterhood #spoonielife #lymewarrior #mentalhealthstigma #chronicillnesswarrior #clinicaldepressionsucks #anxietyrecovery #lovingyourselffirst #chronicpain

The comedy club!!!! I was very surprised but so excited!!! There were some very good comedians. We even got to talk to one in particular afterwards who, when up there, was hilarious. My sides still hurt from laughing so much... or maybe that’s a rib out of place 🤔🤔🤔🤔 nah I’m jesting! It’s totally the rib 😝😉 kidding!!!! No but seriously if y’all want to know who I’m talking about (and if the tag isnt ok I’ll take it off) here he is @adfr yup! We followed each other on instagram! #spoonie #spoonielife #spooniewarrior #chronicillness #chronicpain #chronicfatigue #staypositive #blessed #spreadawareness #asthma #fibromyalgia #invisibleillness #anxiety #socialanxiety #sensoryprocessingdisorder #ehlersdanlossyndrome #texas #staystrong #zebra #spooniesisters #datenight #comedyclub #standupcomedy @lacyboston

update number 1 so i met with a rheumatologist on tuesday. basically what she said is that i tested at a “weak positive” for rheumatoid arthritis, and she didn’t see any of the typical joint inflammation associated with it. she looked at my wrists, knee, etc and noticed more so the hyper mobility of them, but not any key RA symptoms other than pain and stiffness. the results could however be a precursor. she said she doesn’t want to stick me with a lifelong diagnosis and medication because a) i’m so young and b) there may be other routes. she’s going to test my blood again in fourth months, in the meantime i am to make lifestyle and dietary changes to see if it helps. no gluten and little dairy (because eating out is hard as is, these rules will moreso pertain to meals eaten/made at home) and some more vitamins in addition to my usual ones. 1|17|19

"If they can make penicillin out of moldy bread, they can sure make something out of you." - Muhammad Ali

The restaurant was SO fancy!!!! I sipped on my sweet red wine that went very well with all my choices of meats. Best and coolest part (yes it’s weird) but it’s so fancy! They took my coat at the door and I got a token! Hahaha dinner was amazing but the place after was even better. #spoonie #spoonielife #spooniewarrior #chronicillness #chronicpain #chronicfatigue #staypositive #blessed #spreadawareness #asthma #fibromyalgia #invisibleillness #anxiety #socialanxiety #sensoryprocessingdisorder #ehlersdanlossyndrome #texas #staystrong #zebra #spooniesisters #datenight @lacyboston

Pictures from our night out on the town! Here we got our in the daylight still at home pictures. Where you can actually see what we look like lol and yes that last picture is of me quickly putting my jacket back on! It was cold!!!! Unknown to the naked eye I had my emergency medical supplies in my big jacket pockets. Still wore my medical id bracelet and still felt all the pain from the heels. #spoonie #spoonielife #spooniewarrior #chronicillness #chronicpain #chronicfatigue #staypositive #blessed #spreadawareness #asthma #fibromyalgia #invisibleillness #anxiety #socialanxiety #sensoryprocessingdisorder #ehlersdanlossyndrome #texas #staystrong #zebra #spooniesisters #datenight @lacyboston

And this is what happens when I have a bath🛁 🐾

Repost from @corrinahodgson 💜 . “Possibly my favourite Christmas present from @beffiesv650 The cosiest sweatshirt ever and let’s people know when I am out of spoons 🥄 Check out @spooniesistershop She carries the greatest stuff, is a spoonie herself, and donates a portion of every purchase to rare diseases” . . . . . . . #outofspoons #spoonielife #spoonie #spooniesisters #spoonies #spooniestrong #spoonieproblems #chronicillness #chronicpainwarrior #chronicillnesswarrior #chronicpain #chronicallyfabulous #chronicallyill #arachnoiditis #spondylolisthesis #spinabifida #disabledandcute #scoliosis #butyoudontlooksick #invisibleillness #spoontheory #invisibledisability #spooniecommunity #chronicmigraines #migraine #neuraltubedefects #womensupportingwomen #spooniesunite #spooniewarrior #etsyshop

Part 2/2: Last night was my weekly meditation session with @gilas_mindfulness_institute. ⁣ I was determined not to cancel our lesson but at that point, when it feels like I barely have enough energy to keep breathing, I wasn't sure how I'd make it through. ⁣ ⁣ I am unquestionably in crash mode. Debilitating fatigue. Incessant, severe pain. Painsomnia. The thickest shrouds of brain fog. Easily triggered nausea. Unbearable pruritis. The whole gamut. ⁣ ⁣ After gently probing me with questions to get an understanding of where my body was at, she laid out three options for meditation. I mulled them over and to my own surprise, I quickly chose Hug and Release. It surprised me because the past iterations of me would have done ANYTHING to avoid body scans and any practice that required me to tune in to my body, where all the pain was writhing around. Hell no. I wanted distraction. I wanted to be taken out of my body. I wanted escape from the pain. ⁣ ⁣ But not this night. I chose to dive in. To hold space and attention for every part of my suffering body, one at a time, and be with the pain. As she guided me, I focused on hugging my muscles to my bones and then releasing them with the outpouring of my breath. An incredible forty-minutes passed as she led me through my body. As our practice came to a close, I tuned in. I listened. ⁣ ⁣ What I observed made me think of that placid lake in my prior post. Before, the water of that lake was churning. The surface may have looked fairly calm, but deep underneath was chaos and tension. ⁣ ⁣ After the meditation, the depths of me had been soothed. The water was still. Muscles, previously clenched in pain, had relaxed. As I lay there in stillness, I observed the contrast between my surface and my depths. I hadn't been able to feel it clearly before because the internal pain signals were so strong. Now that they had calmed down, I could feel my skin. Burning, alight with fire. ⁣ ⁣ The beautiful miracle of all this was that even though I felt the horrible pain of this burning skin, I was calm. Like still waters. From a distance, safe in my mental fortress of calm, I could make these observations and still remain cloaked in peace.

Even my little man knows today’s rest day. To much pain to do much of anything. My inflammation is still up for sure, damn red meat👎🏻. Any ways it’s going to be a lay around and surf instagram and YouTube kind of week now. Sucks but it’s life... For every one average day comes 4-5 horrible days but the doctors just don’t care cause it ain’t their life. . . . #herniateddisc #herniateddiscs #bulgingdisc #bulgingdiscs #degenerativediscdisease #arthritis #ulcerativecolitis #inflammatoryboweldisease #asthma #cardiacarrestsurvivor #depression #anxiety #chronicpain #chronicillness #invisibleillness #mentalhealth #spoonie #spoonielife #spoonieproblems #spooniewarrior #chronicpainwarrior #chronicillnesswarrior #chronicillnesslife #chronicillnesses #chronicillnessblogger #painmanagment

Might need to change my name to @Stupidleigh! Had a few issues with pain this afternoon (even sharpening pencils ✏️ hurt my wrists) so decided, as I was in pain anyway, a mobility class was a good idea 🤦🏻‍♀️ Tbh I didn’t push too far and I feel really good right now but I suspect that will change when the painkillers wear off 💊 Aiming for shower, food and asleep before that happens 😴 🛏 #donttrythisathome #teamrh #teamrhustle #teamrhfitness #mobility #spooniewarrior #spooniefitness #flexible #notflexible #mewarrior #cfswarrior #pwme #stubbornleigh

Hey guys, today has been ok. I’ve over done it again🤦🏼‍♀️ I needed a bath because I hadn’t washed my hair since Sunday, in hindsight I should’ve had a shower using my shower stool or waited for Jack to get home to help but nope I’m stubborn and wanted a bath. I then had to rest for a few hours after. Then I decided it would be a great idea to walk the dogs😩 I’ll be completely honest they hadn’t been out for a couple of days which they totally don’t seem to mind and it doesn’t effect them as we have a huge garden and they use the cat flap to go in and out all day! I love watching them play from the window. I still feel so so guilty when I don’t feel well enough to walk them and even though I wasn’t well enough today I did it anyway because I was feeling so guilty. I know Jack would’ve done it when he got home if I asked, but I hate asking and I wanted some fresh air. I hate myself for being so stubborn😔 Sending love and spoons❤️🥄 #butyoudontlooksick #invisibleillness #myalgicencephalomyelitis #chronicillness #chronicpain #chronicfatigue #cfsme #spoonie #spooniesupport #spreadingawareness #mentalhealth #deppression #video #vlog #vlogger #videodiary #positivevibes #positive #weightlossgoals #weightloss #weightlossjourney ##weightlosstransformation #weightlossmotivation #rest #selflove #warriors #spooniewarrior #millionsmissing

Inspired by the time I found Geoffrey in my box of wine glasses. He was only a few weeks old and already he had sooooo much character and I knew I was going to have my work cut out. He’s just so naughty! 🤪 #draweveryday #doodleaday ratsofinstagram #ratsofig #rats #pets #petsofinstagram #petsofig #ratmum #loverats #ratlove #ratstagram #ratcommunity #ratagram #fancyrats #dumborat #rexrat #spoonielife #spooniewarrior #spoonies #chronicillness #fibromyalgia #chronicfatigue #thingsthatmakemehappy #petphoto #petphotography #petrat

Trying to Smile! - Although I’m extremely fatigued and in quite a bit of pain other aspects of the day were good. I had a positive appointment with the M.E team. It was refreshing to have someone ask questions and listen without any pre-conceived assumptions. - Even though I have to wait several months, i’m so glad a plan is going to be put in place towards the treatment/support they offer. I know it’s a short term service but any service is better then nothing. - That appointment took if out of me and then working on the computer for as much as I could, I feel the payback already. It’s been an intense week, well by my standards. . . . . #chronicillness#chronicallyill#myalgicencephalomyelitis#mentalhealthawareness#spoonielife#butyoudontlooksick#mobilityaids#anxietysupport#thegirlgang#spooniesupport#walkingstick#invisibleillness#spoonie#selfcare#chronicfatigue#selfesteem#chronicillnesswarrior#cfsme#lbloggersuk#spoonieproblems#mentalhealthsupport#selfhelp#spooniewarrior#empoweringwomen#mentalhealthblogger#spoonielife#healing#cfsrecovery#myalgice##chronicpain#millionsmissing

Last post of the night as I’m knackered and my head is being a pain. But I wanted to write about this post so long but I was scared about writing about it. I have psychosis when I’m really really depressive or when I’m really manic. I started experiencing psychosis last year in March, I started hearing voices telling me to hurt myself and just go away forever. At first I thought I was going mad, but now I’ve understand when I start hearing the voices that’s when I’m seriously unwell to the point of needing treatment from hospital. I battle daily. My highs and lows. The intrusive thoughts and voices. But I’m still here fighting away. So I’m going to have my night meds tonight and probably fall asleep. So see you later Instagram 🖤💛 #bpd #mentalhealth #mentalhealthblogger #socialanxiety #depression #bipolar #anxiety #influencer #spoonie #influencermarketing #invisibleillness #discoverunder10k #bloggersunder10k #followtrain #followforfollowback #chronicallyill #mentallyill #chronicpainwarrior #spooniewarrior #youdontlooksick #recoveryaccount #mentalhealthrecovery #antipsychotics #chronicpain #mentalillness #psychosis #yourstorymatters #mentalhealthawareness #mentalillnessfeelslike

Day 15: Something that makes me smile #chronicallyinspiringchallenge I’m actually so excited by this post! Honestly there are so many things day to day that make me smile so this is the most effortless post I’ve done in a while. Also I’m generally a pretty expressive person so if I’m thinking about something that genuinely gives me joy, it will definitely be written all over my face. No resting bitch face here! 😂 With that all said there are guaranteed parts of life that mean you couldn’t wipe the grin off my face if you tried. Being outside on a beautiful day, wide open spaces where you can see for miles, blue skies, beauty within nature, being able to plan an activity and do it without a symptom interrupting (that will have me grinning for the rest of the day), random acts of kindness from others, friends and family, my dog, other people having a good time, food, food and did I mention food, success for the people around me. Honestly the list is endless. In reality of course smiling is not always as effortless as this post makes out. Do you want to know a secret? Keeping my smile while living with Chronic illness has been a choice. There are many times where it’s felt like I’ll never smile again and to that I say this. Chronic illness can take what it wants. It can take my health, lifestyle and functioning day to day. It will not take my smile because as long as I’m here I have something to smile about. 😁 . . . . . #youreneverfullydressedwithoutasmile #positivitymatters #livelifewithasmile #smilingthroughthepain #smilingthroughitall #lifeappreciation #goodineveryday #alwaysareasontosmile #innerstrength #tomorrowsanewday #selftalk #sickbutinvisible #invisibleillness #butyoudontlooksick #lookafteryourmentalhealth #healthblogger #wellnessblogger #wellnessblog #positiveoutlook #positiveblog #positiveblogger #wellnesswarrior #spooniewarrior #smilesmilesmile #smilingisfree #dontjudgeabookbyitscover #invisiblyill #gratitudeforlife #liveyourbestlifenow

It’s me! In @happiful_magazine ! I was beyond thrilled to contribute to this month’s edition of Happiful Magazine. For those of who don’t know it, it is an amazing magazine centred around mental health and well-being (it’s free to access digitally too). I wrote a feature all about how blogging has helped me come to terms with my illness-as well as make friendships, find a new career and feel valued. There’s some fascinating insight into how blogging could effectively be a form of therapy too! I also interviewed some lovely fellow spoonie bloggers (@rocking2stomas @thespooniemummy and @febstarsblog about how chronicling their health online has changed their lives. When I was diagnosed with Crohn’s in 2013, I picked up my laptop 💻to start blogging my experience in hope of finding some answers and feeling less alone. Six years on and I admit I sometimes lose sight of that when I’m swamped with things to do and worried about stupid things like editing pictures or how many readers I have. But then I remember how scared and alone I felt the day I was diagnosed in China-and how if my blog helps even one of you feel less lonely or less scared (whether you have Crohn’s, starting a gluten-free diet or just like looking at my bright jumper!) then that’s all that matters 💓

HOW TO BALANCE MOVEMENT WITH ILLNESS: a post for my former athletes 🥇 . I’ve noticed something in the chronic illness community. A good portion of us used to be former gym rats, exercise junkies, athletes… basically active AF. Our identities were stripped when we got sick and could no longer participate in the active lifestyle that we both loved and that defined us . Now, many of us have no idea how to incorporate exercise or movement into our lives. Or how to do it without overdoing it. As soon as we get a taste of our feet moving below us or our arms lifting something heavy we can’t stop. Then BAM we throw ourselves into a flare or a relapse and right back into bed . Slowing down is hard! So hard that I’ve relapsed twice from not listening to my body and completely overdoing it. I’ve learned a lot since. So how do we incorporate exercise in a healthy way? By redefining what exercise means to start off. Exercise can no longer mean marathons, HIIT sessions, and deadlift PR’s (at least to start). Exercise has to be taken back to it’s basics of breathing, stabilizing, and gentle flow . The rule of thumb I use for exercise with chronic illness is: after you complete your routine do you have enough energy to do it all again? If yes, stop there! If no, you did too much. Also, proper rest is not only important, but counts as part of your movement routine . It can be really hard to dial back and not do workouts that make you sweat like crazy, feel dead after, or produce muscle soreness. But the harder the workout the more your body has to devote to repair from the exercise which means less energy is going to your healing. I remind myself of this every time I want to just keep pushing. I know I can, I can push through a lot, lift a ton, and train hard. But, is that going to help me in the long run? No, it’s going to mean a few awesome workouts and then weeks in bed instead of steady, routine daily movement which is what I truly want (that’s more movement and healing in the long run in case you didn’t catch that 😉)

Excludes custom orders. Good through Sunday 💕

Did you know? . . . . The Americans With Disabilities Act of 1990 was the first legislation to provide individuals with disabilities to accessibility and accommodations. Additional legislation such as Section 504 of the Rehabilitation Act broadened the definition of disability. Whether you have PTSD, cerebral palsy or anxiety, you are legally entitled to receive reasonable accommodations in the work place and higher education institutions. Being proactive in making arrangements for accommodations with disability support services before the college semester starts is imperative. . . Pro Tip: Make a list of any and all accommodations you anticipate needing. Take into account the mobility aids, assistive technologies, and accommodations that you require not only on your best days, but also your worst. Preparation + Action = Progress! Not sure what accommodations might be best suited to your needs? We can help! Feel free to DM with any questions or concerns.