Feeling FOMO on all the genyus vibes? DON'T SWEAT IT! OUR NEW ONLINE SPACE IS LIT. WE'RE TALKING INSIGHTFUL CHATS, EPIC SUPPORT, AND A COMMUNITY THAT GETS YOU. It's your one-stop shop for unlocking your inner genyus - come on in! Join via 🔗 link in Bio: Genyus Mighty Network (New) → • • • • #StrokeSurvivors #Stroke #StrokeRecovery #StrokeRehab #BrainInjury #YoungStrokeSurvivor #BrainInjurySurvivor #TraumaticBrainInjury #TBI #StrokeSurvivorsNeverQuit #TBISurvivor #TraumaSurvivors #LifeAfterStroke #Community #OccupationalTherapy #PhysicalTherapy #Aphasia #Rehabilitation #AVMSurvivor #Disability #Physiotherapy #ChronicIllness #BrainInjuryRecovery #TBIAwareness #StrokeWarrior #CerebralPalsy #InvisibleDisability #MentalHealth #StorySharing #genyusnetwork
"And I'm pissed off you let me give you all that youth for free" -What I would tell FA if it were a person Is there a song lyric you'd tell your diagnosis?? #raredisease #chronicillness
So yesterday, I finally did something that I had been wanting to do for a very, very long time. I ran my first marathon. I did it in 4:02, which wasn't quite the time I was hoping for and it's certainly not the greatest time ever. But given that I only started training in January, was injured eight weeks out and couldn't train much for six weeks of that time, I think it's actually pretty good. I'm so proud of myself, especially considering that this time six years ago, I could barely muster the energy to walk 1km, let alone run 42, because I was so ill with Hashimoto's Thyroiditis. In the four years since I got a diagnosis, I've done everything that I can to heal myself without any medical interventions - I've retrained my body to achieve a state of health naturally. When I first got sick, I was told that all I could hope for was to manage my condition. No doctor gave me any hope of healing. I had to do my own research to discover it was possible. Along the way, I've learned that I have a number of genetic mutations that impair my ability to perform in everyday life, as well as athletically, including being both homozygous and compound heterozygous for MTHFR polymorphisms. Each time I've found out about something holding me back, I've done whatever is necessary to overcome it. I've changed my diet, my sleep, my approach to work, created some beautiful and genuine friendships, retrained my nervous system (a constant work in progress!), and developed a sense of self-awareness that I never knew was possible before. It's been a long process with some hiccups along the way, but it's been amazing and I'm now truly grateful for my illness and what I've learnt about myself. I'm grateful for the wisdom, strength, and compassion that it has taught me, and also for the passion that it has sparked in me to help others on their journey. Of course, I wouldn't be here without the help and support of the amazing people around me. There's too many to name everyone but I have to mention Vanessa & Rusty, Jamie Doughney, Mum & Dad, and of course, Joe. To anyone else out there who's struggling: never give up. Never stop trying. Never take no for an answer. You've got this.
"Sometimes you have to get lost to find yourself again." Illness often shows up worse when you are on the right path or it confuses you with unknown symptoms. When we give ourselves what we really need on our healing journey, it sometimes ends in deterioration. But so it does when we treat ourselves wrongly. The fox from the enchanted forest next door has taught me a lot in the last few weeks, has carried me through the darkness, encouraged me to let go, to surrender, to take a journey into the underworld to find my bearings again. We have also found causes for illness that repeatedly have presented themselves as deceptively real cures. "The truth, or the right way, sometimes expresses itself in a similar way and often much worse than the root cause of disease or the cause that led us down the wrong path. A clever deception that keeps us from healing and causes us to live a "false truth. ", said the fox. I was taught not only how to recognize the "false truth", but more importantly, how to trust my inner, partly unlived and long lost and suppressed truth again. The deception took away all my trust and banished me from the present, leaving me exhausted, running around between past and future, where lost dreams, pressures and expectations began to chase me more and more. Until I could take no more.. The fox made it possible for me to lose myself in the last darkness of winter, embraced in its protective space. Its spirit made it possible for me to lose myself and then find myself again. I have regained part of my trust and my wild primal instinct and am walking on the right path again. It is a long path to go, but trust buys time. #feelittohealit #loseyourself #lost #rebirth #newbeginnings #transformation #trust #beyou #chronicillness #ownpath #wild #deception #foxmedicine #presence #instinct #wegottime
Today was @walk_ms San Francisco - an absolute picture perfect day on the Embarcadero! The walk is 3 miles or 1 mile - I did 1.5 miles with only a short standing break or two. An improvement from last year! Then a fabulous brunch at #greensrestaurant with some of my most favorite people and some sea lions sunning on the docks. I am beyond grateful and hold so much love for each of them - MS is a tough one, but they continually lift me up, we laugh until our bellies hurt and they genuinely celebrate alongside me the little victories I achieve in my MS Journey. $5,320 raised - every dollar helps, so please consider donating: https://events.nationalmssociety.org/index.cfm?fuseaction=donate.participant&participantID=429478 Next week it is back to @abilitylab for another PT/OT session - excited! #multiplesclerosis #ms #mswarrior #msawareness #chronicillness #msfighter #autoimmunedisease #thisisms #multiplesclerosiswarrior #msstrong #mssociety #mslife #mswarriors #mscommunity #livingwithms #multiplesclerosissociety #ms #nevergiveup #selfcare #peloton #abilitylab #walkms2024 #walkmssanfrancisco @3badlabs
The last four days were spent in two different hospitals as Doctors were trying to figure out where my almost week long fever and migraines were coming from. . Lyme disease, and I was in a Sepsis state. I’ve been sick a lot with my autoimmune but this was sick on a whole new level. . The pain, delirium, waking up in the middle of the night struggling to breath, fever that went from 98-103.6 in less then an hour. I was struggling. I’m grateful I had a Veterinarian with the medical knowledge in my corner the whole way as my advocate. Arden fought for me when I was too week to fight. I had some terrible MDs through this process that discounted my autoimmune disease, jaundice skin and swollen belly and then after fighting for it, some good Doctors. . My girls at work got me flowers and my clinic has been so sweet and supportive. I feel so blessed given the circumstances, to have such support. . PSA. Always wear tick spray when outside this time of year… at least here on the east coast. I didn’t two weeks ago when turkey hunting. Not sure if this is when the bite occurred but a good chance. . #lymedisease #lymediseaseawareness #beyourownadvocate #patientadvocacy #chronicillness
Have you ever encountered Ehlers Danlos Syndrome (EDS)? It's a complex condition affecting connective tissues and it permeates every facet of daily life for those of us living with it. Walking, moving, functioning, even eating can present daily challenges. In my latest blog post, "Stretch, Bend, and Twist: Your Introduction to Ehlers Danlos Syndrome," I shed light on this condition, which was once considered rare. The discussion extends beyond EDS to encompass various aspects of disability and how they impact our everyday lives, from the physical challenges to neurodivergence. I'm dedicated to building a community and fostering an environment of understanding. Join me in exploring these topics and more at Djinni Whispers Blog. Link in bio! #EhlersDanlos #Disability #Disabled #EDS #Zebras #EhlersDanlosSyndrome #EDSBlog #UnderstandingEDS #EDSSupport #RaiseAwareness #InvisibleDisability #InvilibleIllness #ChronicIllness #Spoonie #NoSpoons #ChronicPain
For me, Sunday is always the day I refill my pill container for the week! For the first time in a long time, I don’t have anything I need to take at noon, but knowing how chronic illnesses work, I’m sure something will occupy that slot again soon. Between the supplements and prescribed medications I’m at over 35 pills a day, and that’s less than I’ve taken in a good long while! #disabilitypride #disabilityinclusion #disabilitysupport #disability #chronichealthchronicles #chronicillnessproblems #chronicillnesses #chronicillnesscommunity #chronicillnesshumor #chronicillnesssupport #chronicillnesslife #chronicillnessmemes #chronicillnesswarrior #chronicillnessawareness #chronicillness #DisabilityCommunity #disabilitylife #disabilityrights #disabilityawareness
My longest ride since having guillain-barré syndrome in January. This is the product of working my ass off in physical therapy twice a week and being fortunate that my neurologist caught it early and I was direct admitted and started on IVIG within 24 hours. I’m back to my physical baseline that I was at before January. That was by no means perfect, but in February and March, we had no idea what my level of functioning would be. Riding a bike wasn’t even something we were working toward. Walking without a mobility aid was the goal then. Once I achieved that, then riding the bike became the goal. Took a few weeks and I’m back where i was last summer! #guillanbarresyndromesurvivor #guillanbarresyndrome #neuromusculardisorder #cycling #recumbenttrike #chronicillness #chronicpain @thefacesofguillainbarreandcidp
One year ago today 28.04.23 I experienced medical gaslighting, precipitating a painful and pointless procedure with avoidable post-operative complications, and then many months of shame and struggle followed. It took a long time to come to terms with. I was eventually vindicated when my case was reassigned to another surgeon who agreed with me that my care was negligent, but that is of small comfort. In two weeks time I am trusting a new surgeon and find myself becoming increasingly anxious and ruminating on last year’s events. Anyway, here is what I came home to a year ago from Emily and Martin who cared for me in my recovery 🩵 #hidradentissuppurativa #hsjourney #hsjournal #hidradenitis #surgery #skincondition #disability #acneinversa #autoimmune #chronicpain #chronicillness
We hear this way to often and often miss understood. We age, yes. Our lives get busier, yes. Things become less important than others, yes. But don’t neglect the fact that you are doing less to help your situation rather than blame it on something that is caused by your habits and actions. Your metabolism works with your actions and habits. Like ❤️, Mention 💬, Share 👥 and Save 📲 to someone who needs to hear this.
Life with chronic pain. #chronicpain #chronicillness #chronicillnesswarrior #chronicpainwarrior #spoonies
Today’s public outing allowed my person to assess my needs for Public Access Training. She learned these things about me today: 1. I am generally comfortable in new situations, but I am extremely curious (i.e. easily distracted) and need to practice my socialization A LOT and in a variety of settings. 2. Kibble bits are not enough to redirect me when my attention is fixed elsewhere in public. It’s time to invest in “high-value” treats! (I need more practice at home, too. 😉) 3. I do NOT like getting in the car. Since my new car seat seems to have solved my nausea, a different “special” high-value treat that I only get when buckled in my seat should help me learn to approach the car with neutrality, given time and repetition. (Just one, though, because of my tender tummy.) 4. I calmly accept being left with “an alternate handler” in public, expressing a mild desire to follow my person, then watching curiously for her return while exploring my environment. 5. I calmly meet and interact with strangers, demonstrating curiosity. 6. I am not reactive when rolling carts come near me. 7. Children seem to trigger a reactive response. I barked (briefly) at a child today and pulled at my leash (for some time). The child did not approach me, so my person does not know if an encounter would have caused fear or joy. During this time, I resisted my person’s efforts to redirect me. “High-value” treats might help; more information gathering on her part is needed as well.
Look there she goes, that girl is strange, no question Dazed and distracted, can’t you tell?📚💕 #911dispatcher #dreadhead #dreadlife #potsie #pots #eds #zebra #spoonie #mcas #911strong #spoonielife #chronicillness #liveyourtruth #weightlossjourney #ope #minnesota #midwestlife #pots #dysautonomia #dreads #hippie #eds #ehlersdanlossyndrome #firstresponders #caloriedeficit #bookstore #hippie #chronicillness #invisibleillness #beyourbestself #weightlosssjourney #ivegotyourback911
“Burning out is defined as intense physical, mental, and sometimes emotional exhaustion, typically brought on by prolonged stress and work related stress. Burnout is often accompanied by depression or a dip in your mental health.” Post by Unknown Found on @pinterest Edited by me @chronically_brave Using @acolorstory
Gastroesophageal reflux disease (GERD) is a chronic condition characterized by the backward flow of stomach acid into the esophagus, causing irritation and inflammation. Here's what you need to know: 1️⃣ Prevalence: GERD affects millions of people worldwide, with approximately 20% of adults experiencing symptoms at least once a week. 2️⃣ Symptoms: Common symptoms of GERD include heartburn, regurgitation of stomach contents, chest pain, difficulty swallowing, and chronic cough. 3️⃣ Risk Factors: Factors such as obesity, smoking, hiatal hernia, pregnancy, certain medications, and a diet high in fatty or acidic foods can increase the risk of developing GERD. 4️⃣ Complications: If left untreated, GERD can lead to complications such as esophagitis, Barrett's esophagus, strictures, and even an increased risk of esophageal cancer. 5️⃣ Diagnosis: Diagnosis of GERD typically involves a combination of symptom assessment, medical history review, and diagnostic tests such as endoscopy, pH monitoring, and esophageal manometry. 6️⃣ Treatment: Treatment for GERD may include lifestyle modifications (such as weight loss and dietary changes), medications (such as proton pump inhibitors and H2 blockers), and in severe cases, surgery (such as fundoplication). As we shed light on the prevalence and impact of GERD, let's prioritize awareness, early detection, and effective management strategies to improve the quality of life for those affected by this condition. Stay informed, seek medical advice if you experience symptoms, and together, let's tackle GERD head-on! 💪💙 #GERDAwareness #GutHealth #HealthMatters #gastroesophageal #reflux #disease #thegastromd #health #(gerd) #florida #wellness #surgeon #medicine #ppi #cancer #innovation #chronicillness #healthy #buckhead #diabetes #technology #addiction #stomach #inflammation #omeprazol #medical #goals #community #esophagealcancer #healthylifestyle #thegastromd 🌟🍽️
Me. I’m people. I’m guilty. 😢 Credit @thetherapist2.0 #chronicillness #fibromyalgia #spoonie #invisibleillness #butyoudontlooksick #chronicpain #ehlersdanlossyndrome #autoimmune
‼️LAST CALL‼️ Endometriosis isn’t just a physical condition; it’s deeply intertwined with our emotional health. Stress affects our hormones, and unresolved traumas, even from childhood, can intensify our pain. This session is your gateway to understanding these connections and discovering healing strategies that embrace both your body and mind. Join us for a respectful and nurturing discussion that extends beyond traditional medical advice. We’ll explore holistic and psychological pathways to wellness, drawing on ancient and modern healing practices. It’s a chance to empower yourself, to learn not just to cope but to thrive. Don’t miss this opportunity to transform your approach to health and wellness. Come find support, gain valuable insights, and start your journey to a pain-free life with us on May 4th, from 8-9 PM via Zoom. Act now to secure your place with a minimal coordination fee of $5. This isn’t just a talk; it’s a step towards healing and reclaiming the vibrant life you deserve. We look forward to helping you unlock the door to better health. *Registration link in bio or scan QR #eforendometriosis #e4endo #endoadvocate #endometriosis #endometriosisawareness #singapore #endometriosissingapore #endosupportsg #endocaregiver #endoguardian #endohusband #endometriosishusband #endobelly #endobloat #chronicpain #chronicillness #chronicfatigue #brainfog #adenomyosis
What is your favorite thing to do on your low symptoms days? Tell us in the comments. 💚👇 #chroniccondition #chronicconditioncommunity #chronicconditions #chronicillness
Always like that. Those are the moments, you can do at least something again in your housekeeping. I rarely have energy. #chronic #chronicdisease #spoonielife #spooniewarrior #spooniecommunity #chronicdiseasewarrior #chronicallyawesome #chronicillness #chronicpain #chronicfatigue #chronicpainwarrior #chronicillnessawareness
An affordable neuromodulation device, HeadaTerm 2, has recently been cleared by the FDA! This is great news for those looking for a medication-free way to fight migraine, without breaking the bank or jumping through insurance hurdles. Here’s what you should know >>> LINK IN BIO. . . . #MigraineAgain #Migraine #Neuromodulation #MigraineDevices #NotJustAHeadache #NeurologicalDisorder #InvisibleIllness #MigraineAwareness #MigrainesSuck #MigraineLife #MigraineRelief #MigraineWarrior #ChronicMigraine #ChronicIllness #ChronicPain #Spoonie
This will be my second spring/summer having issues with photosensitivity due to my autoimmune disease and the medications I'm on to treat it. Still trying to accept my newly found life as a literal vampire 🧛♀️ Any one else super sad about having to stay indoors/in the shade/covered in SPF and upf clothing? #photosensitivity #sunexposure #vampire #lupus #rheumatoidarthritis #uctd #autoimmune #autoimmunedisease #autoimmunewarrior #rosacea #chronicillness #invisibleillness #spf #sunscreen #sunscreeneveryday #upfclothing #sunprotection
Throughout my experience in the medical field I have observed patterns and trends. One is the significant impact of childhood experiences on our entire lives, especially our health and well-being. To truly practice preventive medicine, we need to start early on. We need to start from the beginning. I have learned that thoughts, emotions, and behaviors impact the mind and the body. I also have learned that trauma goes further than psychological suffering, and the body does indeed keep the score. Healthy living starts with a healthy brain and a healthy mind. Children look to parents, guardians, family, friends, and educators for guidance in all facets of life. We are the role models. Even if we are in a space of healing ourselves, may it heal your inner child and heal and encourage another child before you. May the healing journey encourage emotional regulation and resilience. I hope this helps and empowers you, and may it increase awareness for those here now and future generations. I am always happy to help and serve on your wellness journey. All my love and support, 🤍 Dr. A #MindBodyWellness #HolisticHealth #EmotionalRegulation #MindBodyConnection #biohacker #Neuroscience #WellnessJourney #SelfCareTips #HealthAndWellness #BodyMindSpirit #stressmanagement #stressrelief #anxietyrelief #depressionrelief #chronicillness #healthylivingtips #wellnesstips #mentalhealthadvice #mentalhealthtips #nervoussystemregulation #childpsychology #traumahealing #mentalhealth #mentalhealthawareness #parenting #parentingtips #healthychildhood
Who else? Leave your comment down below! When injecting my insulin, slow or fast. It always burns, and that is such a nasty feeling 😖 #t1d #t1diabetes #t1diabetic #t1diabetesawareness #chronic #chronicdisease #spoonielife #spooniewarrior #spooniecommunity #chronicdiseasewarrior #chronicallyawesome #chronicillness
Hello friends👋🏽 As most of you know, I've been battling endometriosis the last several years, and I am in need of another surgery. Last year, the doctor basically said the disease had spread to much and she was not able to perform the procedures she had planned. I was recently accepted as a patient at The Center for Endometriosis Care in Atlanta. I am greatful to have finally found a doctor who truly understands my case and has the knowledge and ability to help me. Asking for help is really hard for me, but I know I need to feel better, for me, and for DJ. Please consider donating, and sharing. Thank you💛🎗💛 I will post the link in my bio💛 . . . . . #endometriosis #endo #surgery #endometriosissurgery #operation #findacure #1in10 #iam1in10 #chronicillness #chronicpain
Its starting to get hot which can make POTS symptoms worse! I wanted to share the four things that I do everyday and night to help me feel better and function better throughout the day and how I use the @guavahealthinc app to help track my progress! #dysautonomia #pots #ehlersdanlossyndrome #chronicillness
Excited to announce I'm a #youthforiaambassador I have been loving these products so far and the fact that they are @leapingbunnyprogram certified is an added bonus. I'm also loving the purple... just in time for #lupusawarenessmonth 💜 Can't wait to show you more! Thank you @healing_w_chronicmigraine for encouraging/influencing me to try these products and join the @youthforia family. #sjogrenswarrior #lupus #lupuswarrior #lupusblogger #lupusnephritis #lupusflare #lupusawareness #invisibleillness #invisibledisability #chronicillness #chronicpain #chronic #chronicillnesswarrior #chronicallyawesome #pots #endometriosis #fibromyalgia #flares #chronicallyill #autoimmunediseaseawareness #autoimmunediseases #cancer #nonhodgkinslymphoma #sjogrens #sjogrenssyndrome #ugccreator #fyp
Embracing Challenges Together Living with someone who battles an invisible illness opens your eyes to a world of quiet struggles and silent victories. Each day, I am humbled and inspired by the resilience of the woman I love, who faces each moment with bravery and grace. Invisible illness does not come with a guidebook; it’s a path we navigate through compassion and understanding. Witnessing her courage in the face of fibromyalgia or endometriosis, conditions that are often hidden from view has taught me the true meaning of partnership. It has shown me that the strength of a relationship is not just about sharing joys, but also about shouldering each other's burdens, seen and unseen. I have learned that being there for her doesn’t always mean fixing problems; sometimes it's about holding her hand and listening, offering a smile as a silent nod of encouragement. We laugh, we cry, and most importantly, we grow together. To all men standing with their partners in these hidden battles: your support is more powerful than you know. It brings light to the darkest of days and shows the true strength of love. Let's keep the conversation about invisible illnesses going, to spread awareness and foster understanding in the journey towards healing. #invisibleillness #fibromyalgia #endometriosis #chronicillness #chronicpain #chronicillnessandcouples #chronicillnessandrelationships
Flash warning. Video glitches out a couple of times ⚠️ In all honesty I had another one of those days feeling insecure about my productivity tied to my illness. I guess I’ll just sleep off the anxiety. I’ve been good at sleeping lately 🤷🏿♀️ I actually did have a good explainer planned today but you’ll get it some other time 🥹 [Video description: A video of Jameisha in bed looking confused. The camera slowly zooms in. Written about their head in black text it says “When you plan to finish your work but a fatigue spell hits so tour 20 minute nap lasts 6 hours] #ChronicIllness #Fatigue #Lupus #Instareel #Funny #MentalHealth
The last day of August. I’ve been seeing lots of things shift and transition this summer. Shifts in relationships. Career shifts. Financial shifts. Emotional shifts I turn 28 next month. Am I where I’m supposed to be at that age? Have I done enough? Am I being kind enough. All the questions and lots to explore as this year comes to a close. [Image Description: A photo of Jameisha in a living rooms Jameisha is a Black person with dark brown skin wearing a handmade green/white/brown striped crocheted sweater /man’s a fluffy green bucket hat. Jameisha poses with their head cupped by their hand.] #ChronicIllness #Crochet #Lupus #SelfCare #SlowFashion
The ADDITION mindset ➕🍒🥩 • This is something I talk to my disordered eating patients about. So often we hear that we need to restrict or remove certain foods from our diet to be healthy, but no one talks about foods we should be ADDING to create a more well balanced intake. We do not want to be ignoring our cravings, instead we should plate them up with three ideas in mind. 1: what can I add to make this snack more filling? 2: what can I add to make this snack more colorful? 3: is this plate going to solve my craving, or will I come back for more? Example - if you want chips for a snack. Put some on a plate. To make it more filling, add a protein food such as a hard boiled egg. To make the plate more colorful, add a fruit or veggie. Do this while being mindful of the fact that you are acknowledging your craving, but also ensuring that you are going to leave the table feeling satiated. • #food #foodism #foodismedicine #foodisfuel #foodie #yum #yummy #yummyfood #healthy #healthyfood #healthyliving #healthylifestyle #dietitian #RDN #salad #bowl #saladbowl #ibs #pots #dysautonomia #chronicillness #chronicpain #registereddietitian #letfoodbethymedicine
• #instagood #life #loveyourself #parents #personaldevelopment #poetry #resiliency #selfcompassion #selfesteem #toxicpeople #wellness #addiction #adhd #anger #autoconhecimento #backtheblue #bluelivesmatter #booksontour #bpd #children #chronicillness #chronicpain #coercivecontrol #complextrauma #conquer #cops #courage #emo #emotionalabuse #emotionen
Hello friends👋🏽 As most of you know, I've been battling endometriosis the last several years, and I am in need of another surgery. Last year, the doctor basically said the disease had spread to much and she was not able to perform the procedures she had planned. I was recently accepted as a patient at The Center for Endometriosis Care in Atlanta. I am greatful to have finally found a doctor who truly understands my case and has the knowledge and ability to help me. Asking for help is really hard for me, but I know I need to feel better, for me, and for DJ. Please consider donating, and sharing. Thank you💛🎗💛 I will post the link in my bio💛 . . . . . #endometriosis #endo #surgery #endometriosissurgery #operation #findacure #1in10 #iam1in10 #chronicillness #chronicpain #gofundme #medicalfundraiser #fundraiser #fundraising #donate #pleaseshare
Had my birthday over the weekend and I am definitely NOT feeling my age! A few drinks and my bones are revolting! ☠️ Follow me (@chronically_ill_af ) for more chronic illness content! ❤️ ❤️ ❤️ 🌟 #health #chronicpain #chronicpainwarrior #chronicpainawarness #chronicillness #mentalhealth #mentalhealthawarness #mentalhealthmatters #mentalhealthday #mentalhealthrecovery #mentalhealthwarrior #mentalgains #bewell #invisibleillness #healthandwellness #friends #smile #instagood #life #likeforlike #happy #yourenotalone #tired #migraine #migrainewarrior #memepage #memeaccount #autoimmune #pain
I got a bit of positive news yesterday. During my colonoscopy on Thursday they took some biopsies of the inflamed areas of my colon/rectum to test for CMV (Cytomegalovirus) and C.Diff. They actually thought it wasn't very likely I'd test positive for either one, but turns out I did. The GI team was notified on Friday by the lab that at first glances the tissue looked like it could be infected with CMV, but that they wouldn't be able to confirm the positive results, along with how much of the inflammation was caused by CMV, until tomorrow afternoon at the earliest. I've actually had CMV before, but think this round was caused by the immunosuppressant medications I've been on. CMV basically just mimics and exacerbates Crohns symptoms so they definitely think it has been contributing to the inflammation on some level. The GI team reached out to the Infectious Disease team and decided to start treating the CMV with two bags of IV Antivirals a day in addition to the IV steroid injections. Once they start to see some kind of an improvement in my symptoms they'll consider transitioning me to oral antiviral and steroid medications in preparation of being discharged. Once home, my GI doc and I will start a medication to treat the Crohns, start tapering me off the oral steroids, then once off the steroids they'll continue to treat me with oral antivirals until I test negative for CMV and am no longer experiencing symptoms. This is great news because it shows there's a treatable source of the inflammation in my rectum/colon besides just uncontrollable Crohns Disease. And the more options we have, the longer we can avoid considering an Ostomy. In addition to this news lifting my spirits, I've had soul fueling visits from: *Jeff, Hilary, and Huxley Rowberry and big brother Gabe Farley Friday night... I had been missing my bestie and the boys REAL bad! *My Mom showing up Every. Single. Day. keeping me company for hours at a time, and usually with a Diet Coke in hand 😁 *Sara Jensen, and cute Janey (wearing a Bingo shirt from the TV show Bluey) sending me the sweetest most encouraging video ever! (Cont'd in comments...)
Just done with the walk out of meds for the day and seeing croseyed litterally..... I guess it's nap time #idiopathichypersomniaawarness #idiopathichypersomnialife #idiopathichypersomniafacts #idiopathichypersomniaprobs #idiopathichypersomnia #sleepdisorders #mecfslife #mecfssucks #mecfsawareness #postviralmecfs #myalgicencephalomyelitis #comorbid #chronicillness #alwayssleepy #needenergynow #invisibleillness #stigmatizedillnesses #spoonielife #notlazy #chronicillness #sleepdrunkenness #sleepdrunk #sleepenertia #hypersomnolence #cantthinkstraight #sleepdisorders
It’s a big deal #chronicillnessawareness #chronicillness #chronicillnesswarrior #chronicallyill #potssyndrome #posturalorthostatictachycardiasyndrome #pots #dysautonomiaawareness #dysautonomia
Meal prepping veggies on the weekend is an awesome way to make sure you have an easy way to incorporate veg into your weekly meals. I found this huge baking sheet that makes it so much easier! 🤍🥕🥦🥬 . . . . . . . . . . . . . . #selfcompassion #motivation #healthylifestyle #selfcare #health #chronicpain #chronicillness #burnout #stress #wellness #love #nutrition #healing #selflove #mindfulness #healthyliving #wellbeing #relax #wellness #lifestyle #weightloss #fitness #inspiration #instagood #midlife #menopause #cooking #mealprep
Welp, today’s view from my bed. While I regret nothing, the result of finishing a project at 4 am on Tuesday combined with a week of high pain and high trauma triggers has knocked me flat. I am pleased that I could finish the project, it is the last time I’ll be doing a project like that, especially when I was having so much trouble with the design aspects. I feel like every day I’m still struggling to learn where my limits are; life with progressive chronic illness gets harder not easier. This includes such gems as finding out that one of my joints is on a one way trip to no functioning. Hopefully I can slow down the degradation slope, but there is no fix until I’m ready for more invasive procedures. I wish that I had more support for some of this stuff (like my EDS) when I was much younger. I would potentially be in a better place now than I am. With all that, I’m still delighted to still be here and I am really starting to enjoy my life in a much deeper way. Even if some days I get to see the world from my pillow. #edsawareness #ehlersdanlossyndrome #audhd #nonbinary #nonbinarydisabled #chronicillness #chronicpain #rest #hope
Clinical rotation 2: SA GP Externship ✅ I spent the last two weeks as an extern at a local small animal GP clinic. And though I didn’t take a single pic of myself during my time there, I had a great time. All of the doctors and techs were so great to work with. They taught me so much and I got to participate in a big variety of cases. Some cool things I got to do include: FNA masses, assist in surgeries, extract teeth, an ultrasound-guided cysto, and practice other skills like blood draws, IV catheter placement, anesthesia monitoring, and giving vaccines. I also got to do a ton of PEs so I feel much more systematic about it and am able to notice more abnormalities. This clinic was a really great environment to work in, and it makes me excited for my future working in a small animal GP setting. I also got to see Anthony Rapp in Boston the weekend before starting this rotation which was breathtaking. I cried during the majority of the show. It was incredibly powerful and I’m so thankful to have seen it. Please enjoy my pics of Lilith and my Passover socks. #vetstudent #vetstudentlife #vetstagram #vetstudy #vetmed #vetmedicine #vetmedworld #vetmedlife #veterinary #veterinarian #veterinarystudent #futureveterinarian #futurevet #vetschool #vetschoollife #disability #disabled #disabledvetstudent #disabledveterinarian #chronicillness #chronicpain #chronicfatigue #prevet #prevetstudent #veterinarymedicine #blackcatsofinstagram #blackcat #smallanimalveterinarian #clinicalyear #passover
Always thinking about our friends with chronic and/or silent illnesses! #myfaultygene #chronicillness #chronicpain #silentillness #multiplesclerosis #cancer #metastaticcancer #pancreaticcancer #sarcoma #stomachcancer #prostatecancer #nsclc #lungcancer #coloncancer #uterinecancer #ovariancancer #breastcancer #tnbc #myeloma #lifraumenisyndrome #melanoma #lynchsyndrome
Chronic illness can shift the dynamics of relationships with family, friends, or partners. #chronicillness #autoimmunedisease #healthcoach #chronicpain #wellness #yegwellness #yeghealth #chronicillnesswarrior #chronicillnesscommunity #wellnessjourney #yeg #edmonton #yegliving #onlinecoach #holistichealth #chronicillnesssupport #holistichealthcoach #selflove #selfcare #lupus #multiplesclerosis #arthritis
ou can help us #savethefirstchild. Donate today! ➡️ JARofHope.org ..... #JARofHope #penniesforhope #duchennemusculardystrophy #searchforacure #musculardystrophy
Heat and hunidity and cold and sun and rain so much about the weather impacts people with a wide variety of chronic illnesses in a wide variety of ways Just finished the 2nd half of todays walk. My ficklw body is not adjusted to the humidity especially but even the heat yet.... Had to break it in half and already wishing for air conditioning #chronicpainawareness #chronicillness #invisibleillness #stigmatizedillnesses #youngandsick #autoimmunedisease #flare #fibromyalgiaawareness #centralsensitizationsyndrome #centralnervoussystemdisorder #paindisorder #painproccessing #invisibleillness #invisibledisease #constantsymptoms #constantpain #chronicillness #chronicillnesscommunity #spooniewarrior #spooniesupport #spooniecommunity #spoonillicious #sickpeopleproblems #invisibleillness #stigmatizedillnesses #youngandsick #autoimmunedisease #flare #fibromyalgiaawareness #centralsensitizationsyndrome #centralnervoussystemdisorder #paindisorder #painproccessing #nervepain #allodyniaawareness #allodynia #hyperalgesia #constantsymptoms #constantpain #chronicillness #chronicillnesscommunity #spooniewarrior #spooniesupport #spooniecommunity #spoonillicious #sickpeopleproblems #chronicpain #chronicpainawareness #chronicillness #invisibleillness #stigmatizedillnesses #youngandsick #autoimmunedisease #flare #fibromyalgiaawareness #centralsensitizationsyndrome #centralnervoussystemdisorder #paindisorder #painproccessing #nervepain #allodyniaawareness #allodynia #hyperalgesia #constantsymptoms #constantpain #chronicillness #chronicillnesscommunity #spooniewarrior #spooniesupport #spooniecommunity #spoonillicious #sickpeopleproblems #invisibleillness #stigmatizedillnesses #youngandsick #autoimmunedisease #flare #fibromyalgiaawareness #centralsensitizationsyndrome #centralnervoussystemdisorder #paindisorder #mecfslife #mecfswarrior #mecfsawareness #myalgicencephalomyelitis
♿️ VENDOR SPOTLIGHT ♿️ Please welcome @artshordy! Art Shordy makes custom handmade rugs, painted canvases, resin jewelry & handcrafted wall art pieces that are made of wood & resin. Our inventory consists of popular clothing brands, Anime, Pop Culture, Shoes & More! Art Shordy tell us about their business and passions! “Art Shordy was born from our passion for creating art and wanting to share our work with others, turning our passion and creative expression into a profession. We love making dope rugs, wall art, tables, clothes, and etc for people to keep, enjoy, and love forever. This allow us to have more control over our creative process and share our unique perspective of Anime, Pop Culture, Shoes, popular clothing brands and etc with a wider audience through the business!.” The May Spinny Brand: Gifted & Disabled Summer Bash is on Saturday, May 18, at Four Corners Brewing Co! We are happy to announce our May guest for the Spinny Brand Market, Voice Actors Meredith McCoy, Chuck Huber, Kent Williams, and Jeremy Inman, the Androids will be reuniting for one day only!! You do not want to miss the opportunity to get all their autographs in one place! Check @spinnybrandco for updates. #disability #disabilityawareness #disabled #wheelchair #inclusion #autism #chronicillness #wheelchairlife #specialneeds #accessibility #love #chronicpain #invisibleillness #spoonie #autismawareness #disabilityadvocate #mentalhealth #cerebralpalsy #disabilityrights #disabilityinclusion #cancersurvivor #downsyndrome #disabilities #disabilitypride #abilitynotdisability #disabilitylife #handicap #diversity #amputee #asd
New blog post! @thechronicledvoice https://www.mollynoorimezzo.com/post/your-title-what-s-your-blog-about-3 Excerpt: “At the end of the day I’m an artist so why WOULDN’T I use art to talk about something so significant? Why WOULDN’T I want to help other artists who have been told to keep quiet (as if we have anything to be ashamed of?) because our industry won’t get it. Why WOULDN’T I take advantage of an opportunity to give a voice to millions of people that live with invisible illness? That voice is far more important than any fear I may have of making a choice that may negatively affect my brand. And, I’m sorry, but what the hell is a brand? YOU are your brand. Every struggle you go through makes you a better artist if you allow it to. Those who struggle the most are arguably the most prolific artists. Unless, of course, they are forced to keep quiet and are shamed into thinking the things about them that make them the most human are somehow bad because they ruin the false perception of perfection that we have come to value so much in our society.”
Ptsd sucks. It's bad around this time of year. A mix of around the time my health went down hill. Losing many family members around this time. Not being believed about a uti and going septic. I make connections and see patterns others don't and assume the same things are going to happen. So yes I was close to a panic attack when I started to get uti symptoms. When the urgent care dr was not my normal one. Since my utis do not show on the dip stick. Studys show this happens with Ed's. Things are going well. I assume something bad is about to happen #medicallycomplex #medicaltrauma #ptsd #autoimmuneautonomicganglionopathy #chronicillness #mcas #ehlersdanlos #dysautonomia #chronicinflammatorydemyelinatingpolyneuropathy #myopthy #neuropathy #pots #utis #gastroparesis #smallfiberneuropathy #gastroparesis
Getting creative with gluten-free, nightshade-free pizza toppings again; this time using homemade spinach and artichoke dip. Absolutely delicious! Next time I will be adding grilled chicken to it. . (Pizza crust recipe from @gfshoestring, made using sweet potato starch and sweet potato flour instead of nightshade potatoes.) . . . #gluten #glutenintolerance #glutenfree #glutenfreepizza #nightshades #nightshadeallergy #nightshadefree #cooking #glutenfreecooking #creativecooking #chronicillness #autoimmunedisease
A lady looking down at somebody drowning. She says to the drowning person, "Focus on the positive in the situation" #chronicillness #chronicillnesshumor #chronicillnessmemes #autoimmune #autoimmunememe #spooniememe #spooniehumor #fibromemes #fibromyalgia #spoonies #mecfs #longcovid #chronicillnessmemes
The last thing I was expecting after Crufts was for my wheelchair to break down on the last day 🤦♂️ It was a stressful journey home and resulted in an entire month of being housebound which wasn’t fun. But it got me thinking… one thing I don’t hear enough of is how hard it is for disabled people to get access to mobility aids that are reliable and meet their needs. We’re always expected to “not expect too much”. To get by with heavy, clunky chairs from wheelchair services that cause injuries and limit mobility. To buy second hand or “cheap” equipment that still costs loads and breaks down and isn’t made for us. I barely know of anyone who has access to appropriate mobility equipment that meets their needs and gives them freedom. And those that do either had to wait years for assessments and grants or had to take out loans and money from family to buy expensive equipment just so they had a quality of life and could be independent. While everyone else was leaving crufts, I was stuck at the security office waiting on someone to come and help me get my chair running at least enough to get home. And it wasn’t the first time, like last years crufts when an Uber driver managed to rip one of the tires off of my chair being rough with it and I got stuck at the train station, or when I was travelling on a coach and the driver - who also coughed all over me without a mask and gave me Covid - dragged my chair about carelessly and dropped it ripping off one of the front wheels and its leg ans I had to wait in the freezing and rain for over an hour for them to allow and Uber driver into the bus bay to take me home as I physically couldn’t get myself, never mind my broken chair too, to the main road to be collected. [continued in pinned comment]
Episode 26: Happily Healed w/Tenille! Last Monday of April 😱🤯 CAN YOU BELIEVE IT?! I blinked twice and April said ✌🏾 lol it’s cool though I STAY ready so I don’t gotta get ready 😏 This episode we talkin plans for May which so happens to be LUPUS AWARENESS MONTH!! It’s our time to SHIIIIIINE BABY✨🪩🌟💜 This month we Educate, Encourage & Conquer ! Bring your people all month who 💜Have never heard of Lupus/autoimmune disease 💜Love someone with an autoimmune disease 💜Wonders if they have lupus/ an autoimmune disease 💜Is nosey & wants to be down with the lupies 😂 WE 👏🏾OUT 👏🏾HERE👏🏾 So excited to see you for our standing lunch date Monday at 12pm est Here and everywhere! 🥰 #Lupus #LupusAwareness #LupusWarrior #ChronicIllness #ChronicIllnessAwareness #LupusAwarenessMonth #MayIsLupusAwarenessMonth #Lupie #Plan #HappilyHealedPod #Podcast
There’s been more gymming this week than there has been in a long time. It feels great. I am loving feeling more able and having more energy. Finally feeling like my meds are starting to work. Hopefully this is a turning point #lupus #lupusawareness #chronicillness #chronicpain #gym #irishfitfam #westparkfitness #slowlybutsurely #progressnotperfection #lgbtireland
#ScriptureSunday “So whether you eat or drink or whatever you do, do all to the glory of God.” — 1 Corinthians 10:31 Even infusions, doctor’s appointments, and naps can be done to the glory of God. Diamonds community, we encourage you to focus your hearts on Him this week! 💎 •⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ • #Diamonds2024 #Journeying #DiamondsConference #virtualsummit #onlineconference #virtualconference #christianconference #christianevent #spoonie #spooniesupport #disability #faith #hope #encouragement #chronicillness #chronicallyill #chronicillnesswarrior #chronicillnessfighter #invisibleillness #raredisease #chronicpain #chronicillnessawareness #invisibleillnesswarrior
Shame or shoulds won't get you there, babygirl. But if we can get ✨️behind✨️ the layers of shame, guilt, judgment, or self-criticism that perpetuate our current reality and practice relating to these layers with the qualities we wish to experience, things start to shift. We alchemize pain not by making the pain go away, but by relating to the sensation differently ✨️ #physicaltherapy #physio #physiotherapist #integrative #integrativehealth #somatichealing #pain #chronicpain #chronicillness #anxiety #chronicpainawareness #mentalhealth #trauma #traumainformed #anxiety #depression #ptsd #complextrauma #wellness #mindbody #mindfulness #nervoussystem #neuroscience #neuroplasticity #somaticexperiencing #healing #healingjourney #painreprocessingtherapy #internalfamilysystems #ifs
Educating the public one encounter at a time 🫠
I give my pain to God and move on. I don’t know if I will ever be back to “normal” but then again normal never really existed to begin with. -Queen #pain #sick #chronicillness #fyp #foryoupage #ibd #queen #sheisaqueen #writer #author #poet #poetry #persevere #mynewlife #thisisme #staystrong #bebrave #loveyourself #brave #courage #weakbody #strongmind
Siete makes the best plain kettle chips for people with sneaky seed allergies. "And/Or" on an ingredient list is a hard pass, but I'm good 😊👍 there are only three ingredients: potatoes, avocado oil, sea salt. #chronicillness #adultonsetfoodallergies #sunflowerseedallergy
#gratitude #begrateful #appreciatelife #spoonie #ehlersdanlossyndrome #genetics #trauma #connectivetissuedisorder #hypermobility #ddd #osteopenia #arthritis #fibromyalgia #potssyndrome #chronicillness #chronicpain #chronicfatigue #invisibleillness #chronicgrief #depressionandanxietyawareness
'The biggest community-driven ME/CFS and Long COVID conference ever'. Expert insights, personal stories, and cutting-edge research. 100% online. Free access. Hosted in central Europe on 15th May to 16th May 2024. https://unitetofight2024.world/ n.b. Starts at NZ nighttime 7pm, so not great for watching live, but recordings will be shared later. "Our program comprises a special mix of expert insights, personal stories, and cutting-edge research blending in with modern patient engagement approaches and grassroots movements, making it a unique and valuable resource for bringing together those passionate driving change." "We aim to transform unmet needs into opportunities, highlight social impacts and provide a platform to address innovative solutions for #LongCovid and #MECFS, and bringing complex chronic illnesses out of the shadows. United to fight for a brighter future." #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME #MyalgicE #MECFS #longCOVID #chronicIllness #ChronicIllnessLife #longhaulers #DisruptingDisbelief #canyouseeMEnow
🥂 🌯 Crete 2024 Photo Dump 🏖 🇬🇷 I miss it already #crete #greek #holiday #couple #coupleholiday #takemeback #kalispera #mitsislaguna #fibrowarrior #disabled #disabledtravel #april #spring #weightlossjourney #chronicfatigue #chronicillness #bodybuilder #doyouevenlift #5starhotel #greece #fibromyalgia #resortlife
Could we turn back time 😭🫠 #iihawareness #iihwarrior💚💙 #psuedotumorcerebri #shuntlife #faketumor #chronicillness
Well this is not how we wanted to spend the day.We came in to get her checked for clots.No clots were seen and if all labs come out okay they are assuming it's a CRPS flare in her legs.Normally she'd get lesions,but the CBG has been keeping them away thankfully.She had 2 big seizures since being here.😞 Poor girl needs a break. #crpswarrior #epilepsywarrior #chronicillness #chronicpain
Choose you. The real you. The whole you. 💜 Thank you @alixklingenberg @chooseyou_wellbeing #ichooseme #emotion #feelings #mind #mindfull #thoughts #cognitivebehaviour #biopsychosocial #braincoach #thoughtcoach #mentalhealthcoach #psychospiritual #selflove #selfcare #peoplepleasingrecovery #selfcompassion #recovery #selfhealers #mentalwellbeing #mentalhealth #mentalillness #mentalwellness #chronicillness #seasons #nature #natureformentalhealth #grief #neurodiverse #connectedhealing #psychoeducation
These ones are a little too relatable... Artist credit: unknown. Please reach out if this is your art so that we can properly credit you! 🙏 . . . #doodle #disabilityawareness #disability #chronicillness #chronicillnessawareness #ableism
Thank you @boundariedbootcamp @chooseyou_wellbeing #ichooseme #emotion #feelings #mind #mindfull #thoughts #cognitivebehaviour #biopsychosocial #braincoach #thoughtcoach #mentalhealthcoach #psychospiritual #selflove #selfcare #peoplepleasingrecovery #selfcompassion #recovery #selfhealers #mentalwellbeing #mentalhealth #mentalillness #mentalwellness #chronicillness #seasons #nature #natureformentalhealth #grief #neurodiverse #connectedhealing #psychoeducation
Mental Health in the Face of Illness Prompt: What do you like writing about? Use link in bio -> peer support blog #mentalhealth #mentalillness #chronicillness #spoonie
Last weekend was big, because I got to attend the FDRS conference virtually for the second time! The Fat Disorder Resource Society was founded in 2009 with Karen Herbst attending from the very first conference, speaking about Dercums and Lipedema Here the tone is factual, but laid back, and you get a peek in to what’s brewing in the different arenas The first time I attended this was mind blowing in so many ways.. As a stage 2-3, big lipedema woman, I don’t see many like myself here in Norway. Here I could see myself in many, and it felt good The conference includes patients, surgeons, researchers, physicians, therapists, and all are welcome to talk about their experience, practice, research and theories It is a place where theory meets experience, questions meet answers, and new ideas, inspiration and gratitude can grow I strongly recommend attending if you want to be in the know on new findings and research regarding lipedema, dercums, +++ #fdrs #fatdisorders #fatdisordersresourcesociety #lipedema #lipoedema #lipødem #dercums #chronicillness #kronisksykdom
I was in the hospital for a bit there, and this was my diagnosis ✨️ Idiopathic (maybe)intracranial hypertension (benign). I say maybe because some other testing seems to point at it being caused by an autoimmune illness. The symptoms started almost a year ago, and my primary at the time told me that I needed to talk to a psychiatrist because they sounded like hallucinations 😬 Then I was told migraine aura without headache. Then atypical migraine. They didn't figure it out until I had cognitive impairment because the ventricles of my brain filled with fluid. Yeah, next up on the menu was blindness and death. Cheers to all the other spoonies that are constantly dismissed! May we never stop fighting for our lives as doctors block us at every turn! #iih #chronicillness
Thank you @abbieharrisgraphics for this beautiful new logo @chooseyou_wellbeing #ichooseme #emotion #feelings #mind #mindfull #thoughts #cognitivebehaviour #biopsychosocial #braincoach #thoughtcoach #mentalhealthcoach #psychospiritual #selflove #selfcare #peoplepleasingrecovery #selfcompassion #recovery #selfhealers #mentalwellbeing #mentalhealth #mentalillness #mentalwellness #chronicillness #seasons #nature #natureformentalhealth #grief #neurodiverse #connectedhealing #psychoeducation