#snowflakedisease

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It’s hard and you have to Fucking fight , no matter what doctors have said , the test results, the bullshit that comes with this shitty fucking miserable ass torturous mother fucking son of a bitch of a illness, you just got to fight and make life worth it , stay stress free and take care of yourself, separate yourself from people , places , or things and make ms your bitch within reason #staylifted #medicalmarijuana #uphillbattle #snowflakedisease #fuckms ..... emotional, physical, mental , and sexual abuse and stress and grief and our dying environment manifest these chronic illnesses within our bodies , like things weren’t hard enough #fuckms @ms__fighters @ms_awearness_
Happy Monday! ❄️ as the years have passed with MG I have learned to conserve my energy for certain things and know my limits (most of the time). I still, however, need to learn to how to not let others take some of that energy from me and recognize who is worth my energy. ❄️ May you all have a wonderful, amazing, and strong week full of energy! . . ❄️ . . ❄️#MG #mytheniagravis #mgsnowflake #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgproblems #fuMG #mgstruggles #lifewithmg #mgawareness #myastheniagravisawareness #autoimmunedisorder #ihavemg #staypositive #repost #selfprioritize #selfpriority #priority #energy
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Yes! You are a priority. If you don’t take care of your self, your mind, your body, no one else will. If you have others willing to help that is amazing! But remember everything else can wait, put yourself at the top of the list! ❄️ I moved this weekend, was non-stop Saturday, Sunday my body decided it was too much. I got minimal done, still have boxes piled up in my new place. But I decided not to stress about it too much because my health comes first. I know it’ll get done slowly but surely. ❄️ ❄️ . . ❄️ . . ❄️#MG #mytheniagravis #mgsnowflake #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgproblems #fuMG #mgstruggles #lifewithmg #mgawareness #myastheniagravisawareness #autoimmunedisorder #ihavemg #staypositive #movingsucks #repost #selfprioritize #selfpriority #priority
Tads all folks! And just like that #3days50miles is in the books! I want to send a shout out of gratitude to the Walker Stalkers, the safety crew, the bike crew, the massage therapists, medical crew, the beer guy, and all of the other volunteers (and jokes on the sidewalk!) that made the blisters and sore feet fade into the back of my mind this weekend. This is such a fabulously fun weekend you hardly notice the miles! And when you do, the beautiful scenery or motivational staff are there to support you! ⠀⠀⠀⠀⠀⠀⠀⠀⠀ . Ignore my goofy expression in this photo and focus on the safety guys awesome mohawk helmet (and what you can't appreciate is his awesome playlist that helped to wake me up at around mile 5 😴) Looking forward to next year! ⠀⠀⠀⠀⠀⠀⠀⠀⠀ . . . . . #StrongerThanMS #snowflakedisease #msfighter #msawareness #MSBites #MSwarrior #endms #MSproblems #Spoonie #multiplesclerosis #multiplesclerosisawareness #multiplesclerosisfighter #invisibleillness #butyoudontlooksick #msstrong #CureMS #thisisms #sorefeet #donate #ilovecapecod #NMSS #researchcostsmoney #iwalkforthefuture #freefromms
#facts #aniversarymonth #myastheniagravis #2yearanniversary #myastheniagravissucks #myastheniagraviswontstopme #myastheniagraviswarrior #snowflakedisease #samebutdifferent #jfk #motivationalquotes #motivationalmonday #blessed #foodforthought . . . It's been quite the journey to say the least. Thanks to my medical team I am still here! Crazy how much my life has changed in the last 2 years. By no means do I post for pity party but to raise #awareness of this and many other #invisibleillnesses Myasthenia Gravis is only one, but my main battle, of my many battles. Because my breathing muscles can be affected by any simple viral infection which can put me into crisis or exacerbation. Meaning my respiratory system becomes weakened, laboured and compromised so I have to go into the hospital for treatments to get me back on track. #bethankfuleveryday
Yes, we are!⠀⠀⠀⠀⠀⠀⠀⠀⠀ .⠀⠀⠀⠀⠀⠀⠀⠀⠀ .⠀⠀⠀⠀⠀⠀⠀⠀⠀ .⠀⠀⠀⠀⠀⠀⠀⠀⠀ .⠀⠀⠀⠀⠀⠀⠀⠀⠀ .⠀⠀⠀⠀⠀⠀⠀⠀⠀ .⠀⠀⠀⠀⠀⠀⠀⠀⠀ #motivationMondays #motivationalMondays #mondaythoughts ⠀⠀⠀⠀⠀⠀⠀⠀⠀ #perfectlyimperfect #StrongerThanMS #snowflakedisease #msfighter #msawareness #MSBites #MSwarrior #endms #MSproblems #Spoonie #spoonielife #multiplesclerosis #multiplesclerosisawareness #multiplesclerosisfighter #invisibleillness #butyoudontlooksick #msstrong #CureMS
So it's come to my attention that some people aren't happy with my posts - because apparently I don't look sick. These people don't know me, don't know my circumstances (although I'm sure they THINK they do), and most of all don't seem to get why I post what I do. I'm not here to host pity parties. I'm here to spread joy and love, and raise awareness for #MultipleSclerosis . That does not mean I am obliged to show you my moments of pain exclusively. Instead, I choose to show you my moments of happiness, excitement and hope. It instills hope in me, the way I would like it to instill hope in other #msfighters . I am not obliged to prove to you how much pain I am in to show that I am worthy of bearing the title of #MSwarrior . If what you see upsets you that much, talk to me about it instead of talking about me. The world has enough hate and misunderstanding. For the sake of all my fighters, please stop this now. . "If you judge someone, you have no time to love them." - St. Teresa of Calcutta . . . . #butyoudontlooksick #itsallinyourhead #judgement #invisibleillness #invisiblesymptoms #snowflakedisease #autoimmunedisease #chronicillnessfighter #multiplesclerosisproblems #autoimmunewarrior #msninja #spoonie #spoonielife #spooniestrong #spooniecommunity #spoonieproblems #chronicillness #MSawareness #mssymptoms #spreadlovenothate #truthbomb #thisisMS #esclerosemultipla #esclerosismultiple #multiplesklerose #igers #protip
#cannadilife 🌈 The more you know… Or don’t ... Awareness can save your life. ... Ever wonder why I behave like I behave some times and on top of #MS also have #EDS #Dysautonomia #mthfr ... The estranged didn’t want to bother me and was trying to have me committed and/or heavily sedated on bullshit medication. #FuckThatShit ... Thank you so much to this amazing woman who shares her story and thankfully is educating all of us at #Repost @striatedprism ・・・ Seeing how I'm in the midst of a MS relapse, I wanted to share some of what I live with with you. These aren't all the symptoms I live with. Headaches are usually daily and tremors and speech issues always. Dizziness and vertigo come and go.... But when they come? They dont leave for what seams like a lifetime. This is what I'm currently experiencing with this one. All my old symptoms heightened. I just wanted to share what I'm currently going through.... And this is in the order that they struck this time. I still smile, I still laugh, I still try to wake up and go about my day as best I can. MS is no joke! Ive had swallowing issues. Choking on my own saliva, food and drinks. I've aspirated into my own lungs twice (scary) Vision problems like optic Neuritous arent fun. Sexual difficulty (unable to climax/longer to climax/ desensitization) yea! No fun! The list is long. And no 2 people are alike but may have similar issues. This is #multiplesclerosis Sometimes called the #snowflakedisease I try not to whine and cry about it. It is part of my life now. But some days its hard to keep going. To keep fighting. To want to live like this forever. Because I don't! Medicines can help. I opted to stop taking all but one.. I started on 22 meds and went down to 3 then 1 then none. Now I'm back on 1 because I'd rather feel ok then scared constantly Cannabis helped me get from those 22 meds to 1 And I'm so grateful and thankful every day. A flare or relapse doesnt last forever.... But when it happens it feels like it will never go away, We dont know if THIS TIME the damage will be permanent! Its always a game of chan
Whatever your going through just remember to stay positive. Good things are coming. Better days are in sight. Just keep going. ❄️ my life has been turned upside down but I am trying to stay positive. I feel blessed that despite the stress, lack of sleep, anxiety, and other factors I am still doing well at maintaining my MG symptoms calm. I’ve felt some weakness and fatigue but overall have been holding up well. Support from friends and family have been extremely helpful! ❄️ hope you all have a fun and safe long weekend! ❄️ . ❄️ . . ❄️ . . ❄️#MG #mytheniagravis #mgsnowflake #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgproblems #fuMG #mgstruggles #lifewithmg #mgawareness #myastheniagravisawareness #autoimmunedisorder #ihavemg #staypositive #staystrong
A few months after my diagnosis I had a major eye opener with my health. I tweaked my diet and added foods I never liked (and now I love) and removed foods that were physically harmful to my future. Recently, my eyes have been opened even wider and after much reading and research, I have decided to walk down the Keto road. Not to lose weight (although that’s always an added bonus) or to jump on the bandwagon, but to better my body and my future. I refuse to be that person looking for sympathy and I refuse to let me diagnosis define me. I want to become the best physical version of myself, both on the outside and inside, and there is no better time to start then now. I am beyond ready to kick inflammation’s ass! #newjourney #keto #blackmagic #themagicpill #determination #mindovermatter #cleaneating #protein #veggies #lifestylechanges #ahealthierme #fitgirlgoesketo #snowflakedisease #mssucks #fuckms
#Obesity is an independent risk factor for many chronic health conditions. Having a chronic health condition such as the ones listed below along with Multiple Sclerosis is associated with an increase in #disability and a decreased #qualityoflife ⠀⠀⠀⠀⠀⠀⠀⠀⠀ 👉🏻Type 2 Diabetes 👉🏻Cardiovascular Disease 👉🏻Metabolic Syndrome 👉🏻Hypertension 👉🏻Obstructive Sleep Apnea 👉🏻Arthritis 👉🏻Some Cancers ⠀⠀⠀⠀⠀⠀⠀⠀⠀ . ⠀⠀⠀⠀⠀⠀⠀⠀⠀ ❄️ MS is a disease with a poorly understood diversity of outcomes. ❄️ #Obesity (and obesity-related comorbid health conditions) may help to explain this. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ . ⠀⠀⠀⠀⠀⠀⠀⠀⠀ So… of course this means that a healthy weight is an important part of overall health. BUT what if you are not at a healthy weight? What if you have MS, and one or more of these other conditions and your doctor tells you that you need to lose weight, hands you a one-page handout outlining how to do that and sends you home? Then you get home and find that your world is full of obstacles and MS-related challenges make the recommendations made on the handout sound impossible. What now? ⠀⠀⠀⠀⠀⠀⠀⠀⠀ . ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Weight, BMI, and waist circumference are numbers that quantify weight or distribution of weight. But they are not the only numbers that measure health! Do you know /monitor / manage your: 👉🏻Blood sugar? 👉🏻Blood Pressure? 👉🏻Blood fats like cholesterol or triglyceride? ⠀⠀⠀⠀⠀⠀⠀⠀⠀ . ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Making sustainable dietary and habit changes that have been shown to impact these numbers often also lead to a healthier weight and waist circumference. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ . ⠀⠀⠀⠀⠀⠀⠀⠀⠀ So, my advice is to focus on adopting #sustainable #dailyhabits (including but not limited to food choice) that will result in improved blood sugar, blood pressure, and blood fats. Doing this will ensure improved health and may contribute to a healthier weight. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ . ⠀⠀⠀⠀⠀⠀⠀⠀⠀ #mswellnesswednesday #ms #msfighter #MSBites #MSwarrior #MSproblems #Spoonie #msdiet #multiplesclerosis #snowflakedisease #dietitian #healthyhabits #hrqol #focusonwhatyoucando #knowyournumbers #smallchanges #adapt #doitforyou
Thankful for friends And family that are always there for me through good and bad. To those that are understanding and attempt to understand. 💕 ❄️ ❄️ . ❄️ . . ❄️ . . ❄️#MG #mytheniagravis #mgsnowflake #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgproblems #fuMG #mgstruggles #lifewithmg #mgawareness #myastheniagravisawareness #autoimmunedisorder #ihavemg
Learning to embrace the uncertainty of my journey. ✨ Though, I wish someone would've told me how difficult it is to be chronically ill & adult. Maybe I could've better prepared myself for the anxieties of juggling an 8 to 5 job & still manage to make every specialist & treatment appointment & crises moments to the ER. Not to mention how your sick, vacation and personal days will have to be given up so you can make all those appointments. Lastly, how you'd have little to no energy to do any of the extra stuff you like to do. I'd be lying if I said I didn't cry often from being overwhelmed and frustrated. I am trying my best to just be patient. I refuse to let my illness define me, because I am more than just a medical record. ✊🏽 I know my healing will all happen in Gods timing. 💙 #mgisme #patience #myastheniagravis #chronicillness #snowflakedisease #mgwarrior #empoweringwomen #latepost #disabled #disabilityawareness
Happy Saturday! Actual snail-mail cards are always my favorite! They make my days better and feel so loved that someone took the time to write and mail it out. ❄️ Remember you are brave, strong, and loved! ❄️ ❄️ . ❄️ . . ❄️ . . ❄️#MG #mytheniagravis #mgsnowflake #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgproblems #fuMG #mgstruggles #lifewithmg #mgawareness #myastheniagravisawareness #autoimmunedisorder #ihavemg #card #snailmail
#nima #purring #cuddles #thefeelz #patrickwatson #fireweed #shortvideos #catsofinstagram #eastendpetcare 😢🙏🏼👁I am having some vision loss and getting around. The only option is time and rest to learn if this is how I will remain. #multiplesclerosis needs to be talked about. It is a very slow and progressive disease for some. #snowflakedisease #STRESS &🔥🍕🍭🥃 all play a role in the unraveling of my body. I cannot control that, but I can affectively remove obstacles that really don't need to in place. Sometimes that can be people. I just realized how #lucky we are to live in this small town so when
It wasn’t gonna happen. • We had prayed. And my doctor fought for me and the wonderful people at @katefarms fought for me but in the end, it wasn’t gonna happen, and the order just sat, unfilled. Move on, look for another option. • But suddenly today, I get a delivery... and a pantry full of goodness. Somehow, it got worked out after all. • There are miracles... • And my heart’s just repeating it— ‘You are good to me, good to me You are good to me, good to me You are good to me’
There’s been so much going on this past week I haven’t even had the time or desire to sleep or eat or do anything for myself. I can definitely feel the stress affecting my body: eyes, mouth, legs, hands, arms, stomach. I know I need to pause but I also have so much to do. I’ve been putting myself last this past week and I know it’s only temporary but I had to pause yesterday and just focus on myself (meaning catching up on school work, shower, watch a baking show, & sleep). It definitely helped, my eyes are getting better, yet my body still feels weak. I am going to see a therapist on Monday. ❄️ Do any of you see a therapist? Do you think it helps relieve stress and your MG symptoms? ❄️ I’m praying it helps me, I know everything will start to get better but it’s going to be a long road and I am so worried I’ll get even more symptoms. ❄️ I could definitely use all the prayers everywhere, for me and my family. I pray you are all doing well💕 ❄️ . ❄️ . . ❄️ . . ❄️#MG #mytheniagravis #mgsnowflake #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgproblems #fuMG #mgstruggles #lifewithmg #mgawareness #myastheniagravisawareness #autoimmunedisorder #ihavemg #pray #selfcare #keepgoong #pause #itwillbeok
MS fatigue, Fibromyalgia fatigue, Chronic pain fatigue, Chronic fatigue fatigue, fed up of the fatigue! We've had some really hot weather over the past couple of weeks, here in the UK! And not just a dry heat! The humidity has been high as well! Now, every one with MS is different! Not one the same! #snowflakedisease Some people with MS like dry heat, some people prefer the cool. But none of us are happy with high humidity! My MS doesn't like heat, my internal thermostat doesn't work properly. This is probably due to my MS! It means that when I start to get hot, I can't regulate my temperature, so it just continues to rise! I do everything I possibly can to keep my temperature stable. Things like exercise, and heat waves, can be a major problem! I use things like 'cool towels' 'ice' and many, many fans! Today the weather changed! For me, I was hoping it was going to be for the better! Its lovely and cool now, but my body has no strength! I feel totally exhausted! I know its because of how much pain I get when the weather is hot and humid! I just need to remember to take it steady and be kind to myself! 💜🙏💜 #heatwave #heatsensitivity #ms #multiplesclerosis #humidity #MegaSpecial #mswarrior #webewarrior #webewithme #webe #musclestrength #multiplediseases #fibrofighters #fibro #fibromyalgia
Sometimes I feel like the top thing on my bucket list is to get off prednisone... That day will be a day of celebration
Falling. No control. My legs became weak. I hit the ground and just stay there for a while. Tears in my heart. Try not to show them. But I failed. I cried. #thisisms #multiplesclerosis #fightingms #mswarrior #msawareness #fightlikeagirl #snowflakedisease #mssucks #sadness #ebv #epsteinbarr #curems #hurtmyfoot #writing
Hump day mood 🐪 I called my insurance yesterday to see why I have to pay so much out of pocket for a routine bone density test (I’ve never had to pay this much before). The girl didn’t know what that was, what prednisone or Imuran was, or the importance of regular prevention tests such as a bone density and blood tests. She couldn’t even find the bill on my account, but it’s there when I check. I don’t understand why they put people in insurance that have no medical knowledge. I know most professionals don’t know what Myasthenia Gravis is. But they should at least have knowledge of basic medical terms when you are a medical insurance company! At least put people with common sense to listen and ask questions if they don’t know... she thought I said I was pregnant instead of prednisone and started to laugh 😑 I was on my lunch break, I don’t have time for this. Will attempt to call again today. ❄️ hope you all have a wonderful day and rest of the week!! ❄️ ❄️ . ❄️ . . ❄️ . . ❄️#MG #mytheniagravis #mgsnowflake #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgproblems #fuMG #mgstruggles #lifewithmg #mgawareness #myastheniagravisawareness #autoimmunedisorder #ihavemg #humpday #expensive
Don’t let anyone bring you down this week! You are amazing, wonderful, unique, worth it, more than enough, a warrior, strong, and so much more. Just ignore the negativity and focus on positivity. ❄️ ❄️ . ❄️ . . ❄️ . . ❄️#MG #mytheniagravis #mgsnowflake #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgproblems #fuMG #mgstruggles #lifewithmg #mgawareness #myastheniagravisawareness #autoimmunedisorder #ihavemg #motivationmonday #happy
Happy Friday! My friend got me some MG Awareness charms! She got me a ribbon and a blue bead but I exchanged them for these because I love the snowflake of MG and they didn’t have teal so I picked our favorite color, purple. ❄️ how I wish it would snow in Houston again right about now! These 100+ days are rough!!! Hope everyone has a nice weekend! I’ll be inside all weekend! ❄️ . ❄️ . . ❄️ . . ❄️#MG #mytheniagravis #mgsnowflake #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgproblems #fuMG #mgstruggles #lifewithmg #mgawareness #myastheniagravisawareness #autoimmunedisorder #ihavemg #toohot #weather #snowflake #jamesavery #jamesaverycharmbracelet #jamesaverycharm
I will be in aestivation mode (hot hibernation - I had to look it up lol ) the rest of the month... it is way too hot! 🔥 Please be careful anytime you have to go out, listen to your body and know your limits. Stay as cool as possible and hydrated! The heat can exacerbate MG symptoms. ❄️ The heat affects me so bad, much more than the cold. I avoid going out as much as possible. ❄️ Does the heat affect you? How do you deal with it or what precautions do you take or tips can you share?❄️ . ❄️ . . ❄️ . . ❄️#MG #mytheniagravis #mgsnowflake #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgproblems #fuMG #mgstruggles #lifewithmg #mgawareness #myastheniagravisawareness #autoimmunedisorder #ihavemg #toohot #weather
Think back to where you were when you first started your MG journey and where you are now. Whether it’s minor or big improvements you have still gone far! There is more ahead but let’s look at the present and celebrate current achievements! Give yourself credit always! ❄️ this weekend I was able to go to the mall and grocery shop in one day, that was my achievement of the day! ❄️ . ❄️ . . ❄️ . . ❄️#MG #mytheniagravis #mgsnowflake #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgproblems #fuMG #mgstruggles #lifewithmg #mgawareness #myastheniagravisawareness #autoimmunedisorder #ihavemg #repost @mujeresdemaiz
YOU ARE AMAZING!! You are capable, you are brave, you are strong, you are significant, you are a warrior! We go through obstacles and battles every day that most will never understand. It’s ok to feel defeated at times, but after a pity party pick yourself up and remember how wonderful you are! Do what you need to do for you! ❄️ . ❄️ . . ❄️ . . ❄️#MG #mytheniagravis #mgsnowflake #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgproblems #fuMG #mgstruggles #lifewithmg #mgawareness #myastheniagravisawareness #autoimmunedisorder #ihavemg #repost
My friend asked me this weekend how I can tell when I’m just tired or when I’m MG tired... after 8 years with Myasthenia Gravis I still find it difficult to explain what exactly it feels like. ❄️ the best way I could explain it is tired I feel it just in my eyes like most people, but MG I feel it in my muscles, mostly my mouth, arms and legs. ❄️ How do you explain what it feels like? . ❄️ . . ❄️ . . ❄️#MG #mytheniagravis #mgsnowflake #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgproblems #fuMG #mgstruggles #lifewithmg #mgawareness #myastheniagravisawareness #autoimmunedisorder #ihavemg
I did a thing. (rant ahead ⬇️) So I've had a relapse. And it isn't always easy to identify to figure out if you are legit having a relapse - back me up here, my people with MS 🖐️. It could take a few hours, or days, or in my case even weeks. It grew get slowly everyday, and I put it down other things like the Dubai heat or my period. I finally visited my neurologist, and she said "ok 2 options. We admit you to the hospital for 3 days of steroids, or we do an MRI." I'll take the MRI 😒🙋. Steroids suck, at least for me. My last infusion left me with a very painful rash, and I'm not eager to go through that again ❌ Plus, apparently steroids work less efficiently the further on you are in your relapse. Who knew. So an MRI for my brain, cervical and dorsal spine is booked for this Wednesday AM. Please pray for me! I'm feeling better physically but not so much the other -llys. Speaking of, my doctor said "maybe it's all psychological" (And tried pushing the antidepressants AGAIN). 😑 If I had a dirham for every time someone said I was dreaming up my pain, I'd have found a cure for my pain 💸 Also! I've had this crazy symptom every since just before my diagnosis: the slightest touch on certain areas of my body STINGS, even if it's clothing or a strand of hair. And I find out what it's called NOW. 😡 ANYWAY. I know my body with MS after 4 years of living with it, and I know it doesn't like more medication. Yes, I need the DMDs and some pain meds - for now - but if I can keep that at a minimum and feed and heal my body through good, clean food then I'd rather do that. Side effects suck (that's why steroids suck). So here's a vanilla mocha latte with LOTSA homemade coconut milk, ground cacao nibs and @vitalproteins #collagenpeptides Needs a metal straw.
“It’s about what you believe. And I believe in love. Only love will truly save the world.” - W.W. ❤️🇺🇸💙 Happy 4th everyone! Let’s spread love today and every day to make the world a more peaceful and loving planet to live on. And hope you have a nice relaxing and cool day!! . ❄️ . . ❄️ . . ❄️#MG #mytheniagravis #mgsnowflake #mgcantstopme #mgstrong #mgawareness #spoonie #chronicillness #snowflakedisease #mgwarrior #ihaveheardofmg #seemenotmg #stompoutmg #invisibleillness #autoimmunedisease #snowflake #mgproblems #fuMG #mgstruggles #lifewithmg #mgawareness #myastheniagravisawareness #paintthetownteal #autoimmunedisorder #invisibleillness #ihavemg #notmine #repost #4thofjuly #july4 #independenceday #wonderwoman
My snowflakes brought a lot of awareness about MS to many nurses this past week. Even though they bruised me a lot...they were all incredible nurses!! I was so so lucky. The PT’s & OT & hospitalist were all so kind. 🎗 #onedayatatime #multiplesclerosis #msjourney2015 #snowflakedisease
At the end of another #myastheniagravisawareness month, I just keep finding these words... “For My thoughts are not your thoughts, Nor are your ways My ways,” says the Lord. “For as the heavens are higher than the earth, So are My ways higher than your ways, And My thoughts than your thoughts. • “For as the rain comes down, and the snow from heaven, And do not return there, But water the earth, And make it bring forth and bud, That it may give seed to the sower And bread to the eater, So shall My word be that goes forth from My mouth; It shall not return to Me void, But it shall accomplish what I please, And it shall prosper in the thing for which I sent it. • “For you shall go out with joy, And be led out with peace; The mountains and the hills Shall break forth into singing before you, And all the trees of the field shall clap their hands. Instead of the thorn shall come up the cypress tree, And instead of the brier shall come up the myrtle tree; And it shall be to the Lord for a name, For an everlasting sign that shall not be cut off.” Isaiah55.8-13
June is Myasthenia Gravis Awareness month. For the BEST description of what it’s like to live with a chronic (no cure) condition please check out #thespoontheory www.butyoudontlooksick.com by the incredible @christinemiserandino 🖤🖤🖤 A friend brought something to my attention, which I’d like to share, thank you💗 I can only speak from my experience, and it can often be difficult to see people you care about dealing with something. The instinct is often to offer help, I believe it comes from a genuine place of kindness. I truly appreciate and love everyone who is caring, with a heart so full of compassion they want to help. This is not spoken much outside of the community of those with medical conditions, but the unintended consequence of this, contrary to the intention of wanting to help, is a sense of feeling unheard, misunderstood, and it can become isolating. I have done and continue to do everything possible to find ways to live my best life. The most valuable gift I can receive from anyone is not to be fixed, but to be understood. Again I can only speak from my experience. The kindest thing anyone can do to help, is to ask if there’s anything they can do to help; to ask if the person would like to hear any suggestions regarding their care. This allows for a conversation, which opens the door for awareness. We don’t know what we don’t know, until we know. When we know better we do better. With appreciation and gratitude, one love✌️ 🖤🖤🖤 #myastheniagravis #myastheniagravisawareness #myastheniagravisawarenessmonth #snowflakedisease #ragdolldisease #mgwarrior #ihaveheardofmg #autoimmune #invisibleillness #butyoudontlooksick #invisibleillnessawareness #invisibleillnesswarrior #thegiftthatkeepsongiving #fatigue #thymectomy #myastheniccrisis #chroniccondition #nocure #fighter #pma #positivity #strength #hope #faith #thankful #grateful #liveingratitude #alwaysabrightside #silverliningqueen
How many of you have a handicap parking pass? 🙋🏻‍♀️ how many of you have dealt with ignorant individuals stating that you “don’t look sick, should be ashamed, are taking advantage, stop being lazy” from using handicap parking? 🙋🏻‍♀️ how many feel embarrassed at times or think twice before parking in handicap due to ignorance of others? 🙋🏻‍♀️ I have cried a few times from others negative comments, luckily each time I have been with a friend or family member that jumps to my defense and starts telling this person that I have Myasthenia Gravis. The sad part is, most of these individuals aren’t even willing to listen. ❄️ ❄️. . . ❄️ . . ❄️#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 #invisibleillness #handicap
One of my favorite images from the Houston Myasthenia Gravis Conference a couple years ago that describes how one with MG feels. ❄️ so relevant; whether it’s seconds, minutes, hours, or day to day... the energy just seems to run out. ❄️. . . ❄️ . . ❄️#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 #energyrunsout
There is a lot more behind the tattoos then just the ink. Last night my brother and I shared a very memorable bonding moment that neither of us will ever forget. In 2016, my brother was diagnosed with kidney cancer and ended up having one of his kidneys removed. In 2017, I was diagnosed with MS. Ironically, the ribbons for our unwanted diseases are both orange. So a few months ago we had an idea to get tattoos together representing something that is now and will always be apart of us. And last night we made it happen. I may have not fully accepted my diagnosis yet and there is still a long road in front of me, but this is a big step in owning it. Many people cannot and do not understand and that’s ok. But through the help of my cheerleaders, it makes it a little easier. And he may not realize it, but my brother has been a huge inspiration in these last 10 months and now every day I have a permanent reminder that like him, I can and will get through it 🧡 #msawareness #kidneycancerawareness #fuckcancer #fuckms #snowflakedisease #whatdoesntkillyoumakesyoustronger #orange #orangeribbon #freshink
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