#snowflakedisease

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It is game day!! ⚾️ Today is the Houston Astro’s MG Awareness Month Game! Look for MG and Teal shirts in section 134! Game starts at 6:15 pm. Let’s strike out MG and raise awareness!! See you there!! ❄️ . ❄️ . . ❄️ . . ❄️ #MG #mytheniagravis #mgsnowflake #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgproblems #fuMG #mgstruggles #lifewithmg #mgawarenessmonth #myastheniagravisawareness #paintthetownteal #autoimmunedisorder #ihavemg #houstonastros #mgawarenessgame #strikeoutmg @astrosbaseball
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When being diagnosed with an autoimmune immune disease it changes everything. You have to accommodate to your new life, to the unknown future, and to people around you. There are new stressors and obstacles to deal with. And many times we go through a grief process of our old life before MG. I know I definitely did and still do at times. I ask “why me?” It took me a few years to finally realize and accept that I am going to have MG for the rest of my life (unless there is a found cure). Once a I accepted that I was able to move forward little by little, by doing my own research, being a better advocate for myself, and reaching out to support groups. Finding support groups through Facebook and in person have helped me so much mentally. Just to be able to realize that I am not the only one dealing with this made me feel better. It is a relief when you can speak with someone and ask questions without being judged, misunderstood, or even thoughts that you may be “faking it”. Without getting opinions of “you just need sleep, vitamins, loose weight, diet, etc.”. My support groups have really helped me through my grieving process. At times I still ask “why me” and have my pity party, but then I reach out to my groups and tend to feel better. I highly encourage you all to find a good support group whether online or in person. ❄️ if anyone needs help finding a group let me know! And I’m always here to talk as well. 💕 ❄️ . ❄️ . . ❄️ . . ❄️ #MG #mytheniagravis #mgsnowflake #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgproblems #fuMG #mgstruggles #lifewithmg #mgawarenessmonth #myastheniagravisawareness #paintthetownteal #autoimmunedisorder #ihavemg #mentalhealth #physicalhealth
During my first few years of having Myasthenia Gravis I had extreme body weakness. I couldn’t brush my teeth, so my hair, get dressed, and a few times even fell. To this day I am still so cautious and nervous going up and down stairs or even stepping on/off a curb. I had to learn tricks on being able to get dressed and do my hair. You never realize how much your body can do until it can’t any more. . ❄️ . . ❄️ . . ❄️ #MG #mytheniagravis #mgsnowflake #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgproblems #fuMG #mgstruggles #lifewithmg #mgawarenessmonth #myastheniagravisawareness #paintthetownteal #autoimmunedisorder #ihavemg
Het Epstein-Barr virus. Iets waar ik toch wel meer over wil weten... Het virus zou gelinkt zijn aan auto immuunziektes zoals multiple sclerose. Er wordt gezegd dat het virus al erg lang bestaat, maar dat het sinds de industriële revolutie rond 1800-1900 is gemuteerd tot zijn huidige vorm. Eiwit van dit virus zou zich hechten in bepaalde lichaamsdelen waardoor iemand ziek kan worden. Dit vind ik in ieder geval voldoende om er meer over te leren, toch? #epsteinbarrvirus #ebv #multiplesclerosis #mswarrior #ms #snowflakedisease #rrms #autoimmunedisease #chronicillness #fightingmultiplesclerosis #thisisms #msawareness #medicalmedium #thyroidhealing 🎗
For 6 years I did IVIg, it was the only thing that helped me but only for a short period. I could feel my body weaken as it came closer to the time to do it again. The times I struggled with insurance to approve it and went way past the time I usually got it, I was on the edge of going into crisis. I started to become allergic to the different brands of IVIg, so had to start switching and eliminating, I was down to the last one available. I was getting hives, post treatment “flu like symptoms” and the migraines were increasing. My insurance was changing to “adult” and no longer would cover IVIg, so a few months before stopping I started Imuran. December 2016 I received my last dose of IVIg, thankfully Imuran has worked for me and I have not needed IVIg. ❄️ IVIg doesn’t work for everyone but it does work for some, just like Imuran and any other treatment. Remember, we are all Snowflakes, unique. ❄️ . . ❄️ . . ❄️ #MG #mytheniagravis #mgsnowflake #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgproblems #fuMG #mgstruggles #lifewithmg #mgawarenessmonth #myastheniagravisawareness #paintthetownteal #autoimmunedisorder #ihavemg #ivig
Just a snowflake in the sun ❄️☀️💦 check out my latest article on @themightysite regarding what it means to truly be aware! 🔛 https://themighty.com/2018/06/raising-awareness-for-myasthenia-gravis/ #snowflakedisease #invisibledisease #myastheniagravis #awareofrare #themighty #raredisease #spoonie
I still think of this often every now and then. I was 19 sitting at the edge of the hospital bed with my mom in the room, this was after about 3 months of symptoms, doctors and tests. The neurologist said “you have Myasthenia Gravis” and started to explain what it was. All I could think of was “great, we know what it is now, so how do we fix it?!” I didn’t understand that meant forever and that there was no cure. I didn’t understand that I had to learn to live a new life and learn a new “normal”. I have a better perspective of MG now but now I’m still learning so much about it and myself. ❄️ . ❄️ . ❄️ . ❄️ #MG #mytheniagravis #mgsnowflake #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgproblems #fuMG #mgstruggles #lifewithmg #mgawarenessmonth #myastheniagravisawareness #paintthetownteal #autoimmunedisorder #ihavemg #ihavemgbutitdoesnthaveme
Thank you for taking time and reading my bio. Last yea I was top tier donator for Houston and plan on working my butt off to get there again. Having this disease with no cure makes you very determined to exceed your goal. A life with out MG would be a dream come true. Chemo every 4 months Plasmaphoresis and non stop meds gets old but you gotta keep on keepin on. God has carried me more times than I can count. You always have to have faith and put that smile on your face. Thank god for my loving husband family and friends. Couldn’t do any of this w out you. If there is anyway you could donate or come out and walk in nov. it would mean the world to me! My link is in my bio. Just search donate for a walker and put in “Team Adkins” thank you! #mg #mglife #mgwalk2018 #findacure #mgcantstopme #mgcansuckit #spoonie #snowflakedisease
Someone said “you look sick” and i responded “that’s because I am” Puffy steroid face, i will be back on track once this craziness leaves. #ihatesteroids but they make me feel better although you gain a few pounds, have a puffy face and have elevated sugars #prednisone does help, it just tastes awful.... #curems #mshurts #mssister #snowflakedisease #msfamily #msfighter #autoimmunedisease #msdisability #disabledandcute #ineedarealhug #ineedsleep #sickandtiredofbeingsickandtired #disabledbadass
I owe you two posts today, yesterday I was feeling under the weather ❄️ Myasthenia gravis (MG) is a chronic autoimmune disorder in which antibodies destroy the communication between nerves and muscle, resulting in weakness of the skeletal muscles. Myasthenia gravis affects the voluntary muscles of the body, especially those that control the eyes, mouth, throat and limbs ❄️ . ❄️ . ❄️ . ❄️ #MG #mytheniagravis #mgsnowflake #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgproblems #fuMG #mgstruggles #lifewithmg #mgawarenessmonth #myastheniagravisawareness #paintthetownteal #autoimmunedisorder #itscomplicated
I’ve been dealing with this #mshug since yesterday, my ribs hurt. That’s why ive been on a small hiatus, icy hot has helped but me im going to sleep now, resting is crucial for me, can’t wait for things to normalize for me..... that’s why i take advantage of good days #multiplesclerosis #msawareness #msfamily #msstrong #mswarrior #msfighter #mssisters #sendgoodvibes #sickandtiredofbeingsickandtired #autoimmunedisease #invisibleillness #snowflakedisease #tired #mshurts #ineedarealhug
June is Myasthenia Gravis Awareness Month. It has been a long 16 years with weight gain, surgery, weakness, incubation, IVIG, meds, and etc, but MG does not define me and it wont stop me from living my life to the fullest. #MyastheniaGravis #SnowFlakeDisease #TealRibbon ❤💪❤
How many have gotten a thymectomy? What kind? Do you think it helped your MG? ❄️ One treatment for MG is a Thymectomy. The thymus plays a major role in the development of the body’s immune system. A thymectomy is the surgical removal of the thymus gland. It is not a cure, but may decrease some symptoms and increase the chances of remission. (Via MGFA web). ❄️ 3 months after my diagnosis I was being prepared to have a thymectomy. To prep for surgery I had to do some rounds of plasmapherisis to strengthen me, which definitely worked! I thought I could run a marathon & was cured after! Due to plasmapheresis I got a blood clot in my neck where I had the procedure done & had to be on blood thinner injections. ❄️ I got mine in 2009 a few months after diagnosis. I got the robotic side incision. It was definitely a painful pre and post surgery but As the years pass I realize that it did work for me. I may not be in remission but I no longer have my initial serve symptoms. My initial symptoms were double vision, droopy eyelids, weakness of my mouth, neck and throat. I couldn’t eat, talk, or smile. ❄️ although I now experience general weakness and at times I do experience weakness in my face it is not nearly as severe as back then. For that I feel blessed. ❄️ . ❄️ . ❄️ #MG #mytheniagravis #mgsnowflake #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgproblems #fuMG #mgstruggles #lifewithmg #mgawarenessmonth #myastheniagravisawareness #paintthetownteal #autoimmunedisorder #thymectomy
It's that time MG'ERS❄️ I usually have three water bottles in my freezer (rock hard) so when I leave my house I have something cold with me that I can put on my eyes when they are drooping or I feel like they won't open.❄️ #MGSTRONG #MGISNTME #MG #MYASTHENIAGRAVIS #SNOWFLAKEDISEASE #RAGDOLLDISEASE #juneismgawarenessmonth
Ocular myasthenia gravis is a form of MG in which the muscles that move the eyes and control the eyelids are easily fatigued and weakened. Those with ocular MG may experience double vision, blurry vision and/or droopy eyelids in one or both eyes. Using an eyepatch, eyelid tape/crutch, and rest may improve symptoms. ❄️ during my last year of undergrad I experienced ocular MG which also caused migraines from me trying to focus on the board to take notes. A few times I wore an eyepatch at home just to be able to watch TV. I was not able to drive at times, unless I had one eye covered. (And no, seeing glasses don't "fix it"). Currently, when I am very tired I experience blurry vision at times, especially at night, too much time looking at a computer screen or when it is too bright out. ❄️ Do you experience O-MG? What do you do to help? ❄️ . . . . ❄️#MG #mytheniagravis #mgsnowflake #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgproblems #fuMG #mgstruggles #lifewithmg #mgawarenessmonth #myastheniagravisawareness #paintthetownteal #autoimmunedisorder #omg
You don’t get it till you get it #mssucks #mswarrior #snowflakedisease
One of the most common battles we have in the morning, is being able to get out of bed. Consider yourself lucky if I'm on time in the morning. #raredisease #raiseawareness #mglife #MGstrong #snowflakedisease #ragdolldisease #autoimmunity #chronicillness #invisibleillness
The @myastheniaorg always has such amazing information and resources to help individuals with Myasthenia Gravis, caregivers, and anyone that wants to know more! I always refer people to them to get more information! ❄️ #MG #mytheniagravis #mgsnowflake #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgproblems #fuMG #mgstruggles #lifewithmg #mgawarenessmonth #myastheniagravisawareness #paintthetownteal #autoimmunedisorder
We are unique snowflakes! ❄️ remember, no two Myasthenics are alike. We each have different symptoms, different factors that effect us, and differs meds/ treatments that do/don’t work for us. ❄️ similar yet so different, like a snowflake! ❄️ ❄️ ❄️ ❄️ ❄️ ❄️#MG #mytheniagravis #mgsnowflake #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgproblems #fuMG #mgstruggles #lifewithmg #mgawarenessmonth #myastheniagravisawareness #paintthetownteal #autoimmunedisorder
#myastheniagravis was included in the show House Season 2 Episode 6. @tarajiphenson was featured in this episode. Can you guess what other show #mg was featured in that also stars Taraji P Henson? #raiseawareness #mglife #MGstrong #raredisease #chronicillness #invisibleillness #autoimmunity #snowflakedisease #ragdolldisease
Ik wil werken! Fietsen op mijn racefiets! Shoppen! Strandwandelingen maken! Of boswandelingen! Musea bezoeken! Muziek luisteren in het park tijdens festivals! Op vakantie gaan! Sporten! De avondvierdaagse lopen voor een medaille en een zak snoep! IK wil dat ja, maar mijn lichaam wil niets. Mijn benen willen niet doen wat ik wil dat ze doen. Schaamte naar mijn collega’s toe omdat ik al sinds januari 2018 thuis zit. Mijn benen, ze doen het amper tot niet. En het put mij lichamelijk en emotioneel compleet uit. Nee! Het is niet fijn om thuis te zitten omdat je niet anders kan. Nee, want je wereld wordt heel erg klein en beperkt. Ik wil gewoon mijn leven terug. #thisisms #multiplesclerosis #mswarrior #ms #iwanttolive #gevangenis #sotired #curems #youdontlooksick #multiplesclerosisawareness #fightingmultiplesclerosis #chronicillness #fightlikeagirl #snowflakedisease #RRMS #autoimmunedisease #copaxone #fightingdepression #enoughisenough
Does anyone have more than just Myasthenia Gravis? ❄️ it can be so frustrating as scary to think of possibly getting another autoimmune disease either because of MG or the meds I’m on. ❄️ #MG #mytheniagravis #mgsnowflake #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgproblems #fuMG #mgstruggles #lifewithmg #mgawarenessmonth #myastheniagravisawareness #paintthetownteal #autoimmunedisorder
Dining out for Myasthenia Gravis this month! Join me at Urban Foodie Feed Store this Friday night. Enjoy great food, games, and a raffle! These restaurants will make a donation to the Myasthenia Gravis Foundation of America when you mention you are Dining out for MG. #charitywork #hopeforthefuture #myastheniagravis #mgstrong #ihaveheardofmg #myastheniagravisawareness #giveback #foodies #snowflakewellness #diningoutforMG #diningoutforacause #findacure #philanthropist #urbanfoodiefeedstore #thetravelcure #snowflakedisease
How many have had MG affect their voice/speech? 🙋🏻‍♀️ some of my initial symptoms was weakness of my tongue and mouth. I couldn’t talk or eat. I slurred my words and felt as if my tongue was swollen. It was scary and frustrating. At times I still feel some weakness, but not to the extent that it was. ❄️ #MG #mytheniagravis #mgsnowflake #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgproblems #fuMG #mgstruggles #lifewithmg #mgawarenessmonth #myastheniagravisawareness #paintthetownteal
For my Bollywood fans, many of you know Amitabh Bachchan as Bollywood's most iconic and respected actors. He also was diagnosed in 1984 with #myastheniagravis #mglife #MGstrong #snowflakedisease #ragdolldisease #autoimmunity #chronicillness #invisibleillness
MS is known as the snowflake disease, as no two people with MS are alike. It's amazing that someone came up with something so beautiful from something so difficult. Love the positivity here #multiplesclerosis #raisingawareness #illness #ms #snowflake #snowflakedisease #findthebeauty #positive #positivity #beautiful #unique #findacure #mswarrior #strongertogether #letsunite #talkabouthealth
Suzanne Rogers (is a DMV native) plays the longest running character, Maggie, on Days of our Lives. For those of you that are fans, she was diagnosed with #myastheniagravis in 84 and producers wrote her illness in to #raiseawareness . Her character was in remission and they decided to bring #mg back in 2010 (which can happen, even after a #thymectomy ). #mglife #MGstrong #ragdolldisease #snowflakedisease #autoimmunity #chronicillness #invisibleillness
Tattoo made with black tattoo pigment and liberal tears... #righttobeararms #redpilled #snowflakedisease #patriarchyrules
Hard honesty... Sometimes I intentionally keep from trying to smile just because I know I’ll look like I’m upset instead. “What’s wrong?” “Are you okay?” “What’re you reading that’s making you make that face?” Or just the wondering look... I know, I know. But sometimes it can be the hardest part of this disease. Myasthenia has continued to challenge my self-consciousness like nothing else, has made me cringingly aware of my selfishness and vanity. And, on top of my introverted-ness, I wrestle all the more with avoiding the camera lens or wanting to just hide in the back. I’m Anne desperately dying her hair, Lucy flipping through the Magician’s Book... until the page changes and I’m pierced through with the Lion’s eyes. I know...I know... It can be so hard. It’s a lifelong lesson, I suppose. And it’s awkward and frustrating and convicting and embarrassing and tempting and brings its share of tears. It’s one those you-don’t-realize-how-special-and-important-it-is-until-you’ve-lost-it things. And it can be hard to let go of. But really, ultimately, in the end? I know... I know. This is longer than I intended. So basically, I’m learning to let myself smile anyway.
Currently there are treatments for Myasthenia Gravis. It is one of the most treatable autoimmune disease. But it can take a lot of time, and trial & error to find a treatment that works well for a Myasthenic. We can have hope and support research to make finding a treatment easier and hopefully a cure. ❄️ #MG #mytheniagravis #mgsnowflake #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgproblems #fuMG #mgstruggles #lifewithmg #mgawarenessmonth #myastheniagravisawareness #paintthetownteal #mgfa #hopefight cure
Did you know Sleepy has MG? His character was based off someone Walt Disney knew with #myastheniagravis #raiseawareness #snowflakedisease #ragdolldisease #mglife #MGstrong #chronicillness #invisibleillness #autoimmunity #notlazy
So what the heck is MG? How do you describe it to others? ❄️ It is a chronic neuromuscular autoimmune disease. No, it’s not contagious so you can’t get it. it is a disease my body created against itself. It’s pretty rare and underdiagnosed but we think about 70 to 100 thousand Americans are affected by it. It causes fluctuating weakness in the voluntary muscles (for me it’s all my skeletal and facial muscles). The symptoms can range from inability to keep one’s eyes opened to inability to breath. The muscles weaken as they are used and simple things like walking, smiling/talking, and lifting can quickly become very difficult. So many things can make MG worse such as: repetitive movements, stress, extreme heat, foods, medications, lack of sleep, and even tonic water! Symptoms can fluctuate second to second. It’s considered the snowflake disease because every person with MG is different. Different symptoms and different treatments that do or don’t work for each individual. Currently there are treatments that can help but there is no cure. ❄️ #MG #mytheniagravis #mgsnowflake #snowflakes #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgprobs #mgproblems #fuMG #mgstruggles #lifewithmg #mgawarenessmonth #myastheniagravisawareness #paintthetownteal #mgfa #wtfismg
Today marks one year that my precious baby girl was diagnosed with Myasthenia Gravis coincidentally June is also MG awareness month. It’s been a rough road but we are optimistic that one day a cure will be found for not only my baby but anyone dealing with this disease #myastheniagravisawarenessmonth #snowflakedisease #strongestgirliknow #overcomer #undíahabráunacura #onedaytherewillbeacure #mgawarenessmonth
It’s June which means it’s MYASTHENIA GRAVIS AWARENESS MONTH! ❄️❄️❄️ Thanks to some of our AMAZING members from the MG support group of Houston we have some wonderful awareness going on already! The City Of Houston TX has officially proproclaimed June as MG awareness month! Isn’t that amazing?! ❄️ The Houston Astro‘s will recognize MG awareness month at one of their games, June 23! ⚾️ wow!! ❄️ If anyone wants any information on getting a proclamation for your city or interested in joining our group at the Astros game, please message me and let me know! Feel free to share this with others to spread awareness! ❄️ how are you going to spread MG awareness this month?❄️ Let’s paint the town teal! ❄️ #MG #mytheniagravis #mgsnowflake #snowflakes #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgprobs #mgproblems #fuMG #mgstruggles #lifewithmg #mgawarenessmonth #myastheniagravisawareness #proclimation #cityofhouston #houstonastros #paintthetownteal #mgfa
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