Can I be real with y’all for a sec? To be honest, many days I dont feel like what I write and post matters because no one cares. I don’t have a huge following and this is such as niche topic that most of my friends and family simply cant relate. 💫
But one day I received a message from someone asking about my journey and saying how much they loved my content. That's why I do what I do. To help someone else not feel as lost and hopeless as I felt with my diagnosis. If I only ever help that one person, I'm ok with that. 🧡
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-your pain points + challenges
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Breathing is always something I took for granted. So was eating. So was walking and talking and remembering. So was the promise of the future. Of a lively definition of productivity and creative pursuits. Life by my own terms.
Tonight my accessory breathing muscles burn with fatigue like your legs would after a triathlon. My breathing is laborious, sometimes faint, stops and starts. My exhale whistles like a train. My voice is distorted; hoarse, jarred, rocky and awkward. My breath count, essentially a measure of my capacity to inhale, is very poor.
This all used to scare me more than it does now. Now I bide my time. Wait my turn. Worry only makes it worse. My biggest job responsibility is to rest as much as possible. It is literally one of the only things I can do to help myself. It is hard to rest all the time and watch the hours drift by. It a hard to surrender to this truth and to put all my faith in the hope that this is not forever even though science and history tell me I am incurable. It is hard to believe that help is just around the corner. It is hard to know that pushing will only make it worse.
It is hard and it is lonely that all of this is invisible to everyone but me.
I had an amazing day at Caden’s Car Show at C.S. Mott Children's Hospital with my nonprofit Courageous Soles. We gave away about 315 pairs of socks to patients and their families. It was incredible to see how a simple pair of wacky socks can make someone’s day and create so much joy!! Special thanks to those tagged and our awesome donors for making this happen! @courageoussoles will certainly be back next year at #CadensCarShow // on a side note, I had to go to the ER after the event after a few days of increasing issues with my GJ tube. We didn’t get any great answers (but also didn’t get admitted so YAY) so I have an appt with my surgeon on Wed (along with IVIG and a couple other appts). Hopefully this all somehow resolves and we don’t have to do anything invasive. Prayers appreciated!
Reflecting on what I did today still doesn't feel real, the last run I did was a 5k, to go to 22k I didn't think I was was going make it. I want to thank @mr.karl90 for helping achieve this. @mr.karl90 loves his runs, Even with Myasthenia gravis a chronic autoimmune neuromuscular disease, this makes running and exercise very hard anyone with this disease, he still continues to smash it. Over the years @mr.karl90 has completed different types of runs he inspired me to turn a new leaf, knowing Karl has this disease and how hard to works to do something he loves inspired me, I always seen groups of people or couples running together, Karl was always up for doing it on his own and I was always so super proud, Seeing how happy he was after these things made me want to be there with him.
I'm such a lucky human to have this amazing person in my life ❤️.
Ok!! Don't ask me again.if don't believe pls read more about this medicine. Many person already ask me why my face like this .Why many acne.you became fatter now.why you eat so much .your face big more and more.you don't clean your face?You don't diet?
Do you know I very take care my body. I exercise everyday everyday. I am sure I take care my face well.What can help me to get healthy back why I will not do it. I try to happy with everything that happen to me it good I have symptom only in my eye and arm and leg. I very lucky. It not happen about breathing or weakness all of body. But now I start thinking so much about how can I happy with side effect . I searching everyday how to take care face .i do it more than my research 5555. It is mean i know very clear about it. Dont tell me anymore .Ok only 1 time you ask and i answer .i am ok. I understand.i can explain.but 2 -3 times.i feel not ok.
November 2017 - February 2018 with double vision (shown in picture .. Who will think It can happen not only eye it can happen whole body it mean cannot walk or breathing.that why I shock so much)
November 2017 - ??? with #myastheniagravis#autoimmune. #muscleweakness.
January 2018 - 2020 with prednisolone( I think) 😂😂 If you want to help me.pls reading a little about this disease and this medicine.thank you
We spent our last week in sunny Weymouth, enjoying the sites and tastes of our favourite haunts. It was a great week and we were a little sad to have to come home to the real world!
I had a text on Thursday to ‘remind’ me I had an appointment this coming Tuesday! It’s a short notice appointment from the cardiothoracic surgeon that reviewed my ct scan for my neurologist, after the neuro sent it for a second opinion. It may simply be an appointment for the surgeon to tell me he isn’t going to go ahead with anything, but I’m also very aware he may decide to go ahead with a thymectomy. I’m weirdly a little excited to hear what he wants to do. I’ll let you know Tuesday #myastheniagravis#MgStrong💪🏻 #myastheniagravisawareness
I’M H•O•M•E!!! Thursday was a crazy stressful day, but it ended with me in my own bed, and not in the hospital, and for that I am so thankful. Managing TPN at home is a lot and, frankly, overwhelming, but it’s so worth it because, for the most part, I feel AMAZING!!! Infinitely better than when I was struggling on j tube feeds. I still have rough times as we haven't perfected my TPN regimen quite yet, and I’m dealing with some GJ tube troubles, but it’s SO much better!! I’ve already been able to do more than I did in the whole 6 weeks I was home between this admission and the previous (almost 4 month) one. It’s crazy what proper, steady nutrition and hydration (and not using my gut) can do! While the end of our stay was more than stressful and the whole thing wasn’t easy, we had amazing nurses and doctors and truly felt blessed. Even the home care nurse that came Thursday night to help get things going was a Godsend. Thanks to all who have prayed. I know I say that in almost every post, but I truly am grateful!! Now to stay home and out of the hospital for a looooong time...
48 5152 days ago
#avidacomoelaé essas últimas semanas não foram lá muito fáceis. Não sei se é o tal inferno astral (que nunca senti na vida pq amo meu aniversário e já fico eufórica 1 mês antes haha) Fui internada essa semana, a MG resolveu aparecer com mais força e tive que fazer tratamento com imunoglobulina. Mas dessa vez foi diferente, fiquei só 3 dias, estava mais tranquila e aproveitei os dias para pensar muito em tudo que aconteceu na minha vida até agora. Tirei esses dias para agradecer todas as bênçãos que recebi e também repensar o que poderia ter feito de melhor forma. Talvez esses dias tenham sido um preparo para o meu próximo ano, para começar mais forte (física e espiritualmente). Até recebi um olho desenhado pelo meu pai, para gente rir um pouco, pq esse olho ficou assustador! Hahaha Agradeço a minha família, meu marido, meus sogros que cuidaram tanto de mim nessa última semana. Estou pronta para que meu próximo ano venha!!
This is my reality with Myasthenia Gravis. Myasthenia gravis is a neuromuscular autoimmune disease. It is 1 of my 2 chronic incurable illnesses I fight with every day. Ivig allows me to live a “normalish” life. I’m truly thankful for it so I can do things with my friends and family. BUT!! It is not normal. It makes me feel like I have the flu after for a day or two. Don’t feel like a normal 31-year-old. But I won’t give up! I’m loving life to the fullest, making memories with my kids and becoming the healthiest me I can be. #journeytohealth#chronicillness#chronicallyillmom#livingtrue#ivig#myastheniagravis#warriors#lifeunexpected#postprednisone
21 922 days ago
Popular Instagram Photos
June is myasthenia gravis awareness month! I was diagnosed with guillain-barre syndrome at 19 which later ‘turned into’ myasthenia gravis. I will spare you my entire story, but I will tell you this.... after being diagnosed I was told I would have to change my lifestyle which translated to many “can’ts” and “won’ts”.... you can’t exert yourself, you won’t be able to build muscle the same way, you can’t maintain the level of physical activity you’re currently at..... That picture on the left was one of the worst times in my life.. I weighed less than 100lbs and was going through IVig plasma transfusions with terrible side effects... Well, I don’t like being told what I can’t and won’t be able to do. The picture on the right was taken yesterday. I weigh 10 pounds more IN MUSCLE and haven’t had a transfusion since I was 25.
It’s not all rainbows and butterflies... some days are still awful and I occasionally get bad episodes... but if I could tell you one thing, it’s this: no matter what your personal struggle, never give up on your body or underestimate what it is capable of. Cheers!
Hey everyone, my name is Chloe and I am 19 years old. I was diagnosed with Myasthenia when I was 16, and today is my two year anniversary for my thymectomy operation. After being diagnosed it took a long time for the immune suppression to control the myasthenia at all, which meant for about half a year I couldn’t last more than a week outside the hospital without falling back into a crisis state. I don’t think I can ever forget the way I felt then, the hopelessness, the way I didn’t feel like a true human being anymore. My doctors kept telling me there was going to be a light at the end of the tunnel and I just had to keep going. Eventually I was able to do IVIG infusions at home, and a few months after the disease was finally responding well to the prednisone and was ultimately very controlled. From that point it was my mission to get my life back, to grow, to experience as much as I can.. Was the disease completely gone? Of course not, still to this day I feel it there and I still have my own struggles. But I will say, I truly believe the procedure I had 2 years ago helped me immensely. I am on a TINY amount of prednisone, I don’t take nearly as much mestinon, and my IVIG treatments are down to every 5 weeks. I never forget where it started, in fact I think of it every day. I’m grateful and I’m happy with where I’m at right now, I’m active 6 days a week, I eat healthy, I’m going into the nursing program, and most importantly I don’t take people or the little things for granted anymore. Thank you for letting me share some of my story with you, I hope you all are having a lovely Wednesday ❤️ @babiichlo#myastheniagravis#musclemovementfoundation#endmuscledisease#teammgcantstopme#mgcantstopme 🎉
8 1647:24 PM Jun 13, 2018
June is Myasthenia Awareness Month ❄️ a condition that I have raised money/awareness for before as I was misdiagnosed with Ocular Myasthenia for 6 months in 2014/15. Needless to say it totally sucked and I was incredibly fortunate that the diagnosis was eventually proved wrong. If you have never heard of this rare disease please take some time to google it, OR even better if you’re feeling generous please donate to one of their small charities, as they need all the help they can get finding a cure. If nothing else plz enjoy my gorgeous eye patch and stockings 🤓 #myastheniagravis#myastheniagravisawareness
9 1558:07 AM Jun 5, 2018
The month of June is dedicated to a lot of things, but one of them that's rarely talked about is myasthenia gravis, or MG. Myasthenia gravis is Latin for "grave muscle weakness" and it's an autoimmune neuromuscular disorder that causes muscle weakness. The disease can make it difficult to swallow or breathe on your own and for some, the assistance of walkers or a wheelchair are necessary. My symptoms are ocular and getting much better, thankfully, but that's why I need to wear an eyepatch. MG causes me to have double vision and the patch allows me to see straight (literally). Leaving my incredibly stressful design job in advertising last October and breaking my day up with a mindful, meditative nap has helped me lessen my stress, as well as my symptoms of MG, in addition to seeing an incredible doctor that only works with patients that have the disease. This shit was scary for a long time, but I'm gettin' better.