Woman lying in bed holding belly because of the pain in stomach.

5 Things to Remember in a Myasthenia Gravis Crisis

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June is myasthenia gravis (MG) awareness month. For those that have never heard of this rare, neuromuscular autoimmune disease, here are a few fun facts about it:

1. It can make the body go weak at any time
2. Double vision and droopy eyelids are a key trait
3. Can cause severe fatigue in the neck or limbs
4. Can affect breathing
5. Worsens as muscles are used

If you have MG like me you know that some days are great while others just don’t go as planned. One moment you are on your game and going about your life like the warrior you want to be, the next you are in a myasthenia gravis crisis curled up in fetal position in bed. It’s just the way it goes.

I had one of those moments a couple of days ago. I woke up, ran some errands, got coffee with my daughter, picked up the house, got take out for dinner then sat down to eat as usual then sat down to eat. I could feel myself getting weaker throughout the day but thought I could negotiate my way out of it. The conversation in my head went like this:

Me: You’re ok. Just finish dinner and you can lay down.

My Body: I’m not ok! I’m not ok! Mayday! Mayday! Holy cow we are going to die right here in the middle of the fried rice. Abort! Abort! All hands on deck. This is over!

Me: Calm down body. You are going to be fine. You are just tired and we waited to long to eat. Let me finish dinner and we will go to bed early.

My Body: No! I’m melting! We are starting to have a problem breathing and we will probably have to go to the hospital, probably in up in the ICU with that terrible nurse. Are our papers even in order? Where’s my purse? Or maybe we will faint again. Oh God, I think we are going to faint! I hate fainting. Wait, I think we just lost our legs. Did you feel that too? That means the arms are close behind. Oh no! Save yourself! This is getting real right now! We are going down!

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If you haven’t noticed, my body is a bit of an alarmist — and very much a drama queen. Although it has plenty of history to warrant post traumatic stress syndrome (PTSD), as we have been through a lot over the past seven years. It had been a long time since I’d had a complete system failure, so I guess I was due. I had ignored many red flags telling me it was coming.

My MG crisis started with a swirly, dizzy feeling in me head. Next came the feeling that I couldn’t take in a full breath. I decided to abandon my chow mien and head upstairs to bed, but couldn’t get out of my chair. As my husband was helping me up, my arms gave out as well and I started falling to the floor. My daughter was close by and caught me and helped her dad get me to the couch. By then I was covered in sweat and unable to breathe. After a few minutes the three of us made it over to the stairs (side note: my next house will most definitely be a one story). I butt-bumped up the stairs (sat down on one step and went up backwards on my butt, pulling each leg up as I went) with my husband pulling me up each step until I made it to the top. Then I did an army crawl to the bed where he lifted me in.

Devastating for them. Humiliating for me. I will probably have to put my daughter through therapy.

Unfortunately, it is what it is. There isn’t much you can do about it. If you haven’t been though a crisis before, good for you. If you have, you know what I’m talking about.

Although not all myasthenia gravis crises are created equal, there are a few things we should all do when one hits. Below are a few tips to keep you safe and sane:

1) Don’t panic. If you feel yourself going off the deep end, don’t make it worse by panicking. Stress sends cortisol into your blood stream which amps up your immune response even more. It sounds counter intuitive, but lean into your crisis like a karate master. Tell yourself, “OK, this is unfortunate, but I will be fine tomorrow so let’s just write this off as part of the ride and deal with what is happening now, without projections into the future.” Staying present will help you stay a little calmer. Don’t think about all the things you may miss later because of the crash.

2) Check in with your body on a regular. I know my body pretty well because I’ve had to get to know it, many times. We aren’t always friends so one thing I have learned is to check in and read the signs. If my legs aren’t working well I know my balance will be off soon. Next goes my breathing and so forth. All these signs means it’s time to sit down for a little while. Usually that is all I need but when that doesn’t work, I go lay down in a quiet room. By doing the little check-ins, with a little experience I’ve learned to read my body and navigate my life with this disease.

3) Have your medical information up to date. Do you have a medical card? Bracelet? App on your phone stating your condition and all your insurance and doctor information? If not do it now. And by now, I mean right after you finish reading this post. Don’t wait or put it on your to do list because you never know when you will need it. I passed out once at a farmer’s market by myself and that little app on my iPhone kept me safe and the people around me informed. By the time I woke up in the paramedic truck (so embarrassing), I was already on the way to the hospital with my doctor standing by. First responders know where to look on your phone and it doesn’t require a security code to get the information they need. Make sure you have all the necessary information ready for anyone that may need it so if you go in to crisis, you have your back.

4) Ask for support and be grateful. I am not a fan of asking for help, but when I know things aren’t looking good for me I’m not afraid to ask family, friends and sometimes total strangers for help. I have never been turned down so far. Don’t be a hero. If you need help, ask. If you get it, say thank you to those responding. It’s really easy and I’ve found that people are overly generous with their care. I’ve also tried to offer help to someone that I knew was struggling only to be met with a rude, aggressive response. Don’t do that. People are only trying to be kind. Also, sharing in a common humiliation makes it not so humiliating. Join a support group of people who truly understand and can laugh and cry with you after you are done with your crisis. We’ve all had some pretty bad ones (like passing out in a farmer’s market and having the hummus lady try to give you mouth to mouth). Sharing common experiences makes us all feel a little less alone in our struggles. If you don’t know where to look and want an empowering group of folks that never give up their battle, join my private FaceBook support group the Wellness Warrior Tribe. We get it.

5) Prevention is the best treatment. After many years of dealing health issues, we can get a little sloppy. Make sure you know your triggers and are taking care of yourself all the time, not just when you feel unwell. Be mindful of your diet and self care on a regular basis. I should have know better with eating Chinese food, as MSG is a huge trigger for MG but I did it anyway. Dumb move on my part. It’s like being on a plane during an emergency situation. You put the oxygen mask on you first before you put it on anyone else. Taking care of yourself and staying true to what works and rejecting what you know isn’t healthy for you isn’t a luxury, it’s a necessity. You can’t beat the system on this one. The house will always win.

Follow this journey on Lisa Douthit

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To the Family Member Who Told Me I Didn’t Need My Cane

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The other day I was dropping off gifts at a relative’s house. I just had a very important doctor’s appointment, which went extremely well. I was very nervous leading up to it; I never know if I’m going to get good news or bad news. It’s a roller coaster.

When you have five chronic illnesses, life is unpredictable. Ever since I was diagnosed for myasthenia gravis (a rare neuromuscular autoimmune disease) in 2008, I have been working on rebuilding my life with medical procedures, physical therapy, medications, nutrient therapy, nutritional supplements, and, most recently, starting a non-GMO diet.

That year, I went from doing yoga five days a week to not being able to feel my legs. I was bedridden for over a year. I was given a 50/50 shot of living.

Jessica Gimeno
Jessica.

Today, I carry a cane. There are times when I lose feeling in my legs or on one whole side of my body. I have no idea when those moments will happen.

As I dropped off the gifts, I explained to a family member I was coming from a doctor’s appointment. I loved her makeup that day and told her she looked wonderful. My family member said, “You look great.” I said thank you — I did look great that day. Great lipstick and good news will do that. Then she followed it up with, “You don’t need your cane. You should get rid of that.” Sigh. I know she meant well, but still, it stings.

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Here’s the truth about chronic illness: Some illnesses are invisible (although some might argue that an illness that requires a walking aid is not invisible). I also think there’s another source of misunderstanding: The strategies we employ to manage our illnesses often make us feel or look better to the point where people assume our illnesses are over.

The reason I didn’t hit the ground when I lost my balance twice at a store last October? My cane. The reason I didn’t fall down when I left my house and immediately stepped into two feet of snow? My cane. Physical therapy has helped a lot, but even my physical therapist says I should use my cane. I think he’s the expert on this subject.

I had a similar conversation years ago regarding my bipolar 2. I was diagnosed with bipolar disorder at the age of 18. It wasn’t easy; it was a long hard road, struggling with suicidal thoughts and uncontrollable depression to becoming happily stable and developing creative strategies for successfully managing my mental illness.

I graduated cum laude from Northwestern University with a B.S. in communications and a second major in political science. I learned to follow through with things like sleeping on time, seeing my therapist regularly, adhering to prescribed medications and exercising.

A few years after college, I was considering a big transition that would involve moving away. While discussing this with a friend, I told her I was considering how it could affect my depression — in both positive and negative ways. She replied, “Don’t think about that! You don’t have that anymore. That’s in the past.” To her it seemed my bipolar disorder was over because I had gotten better. But the reason I am better is because I practice mental health hygiene every day. I have to work at it.

In addition to myasthenia gravis and bipolar disorder, I live with polycystic ovarian syndrome (PCOS), asthma and psoriasiform dermatitis. People ask me what it’s like to live with five diseases. As I described in my TEDx Talk, it’s like this: I see myself as Rocky and my five illnesses as Rocky’s different opponents. Every day, I get up and step into the ring with Apollo Creed (bipolar disorder), Ivan Drago (PCOS), Clubber Lang (asthma), Tommy Gunn (psoriasiform dermatitis) and myasthenia gravis (Mason Dixon). Each morning, I wake up in tremendous pain, and then I play “Eye of the Tiger,” put on my boxing gloves autographed by Manny Pacquiao and pray for strength to survive another day.

I know many people with chronic illnesses who are also going to war every day. Chronic illness is like running a race with no finish line. Comments such as, “You don’t need a cane,” “You don’t have that anymore” or “You shouldn’t be parking in the disability spot” diminish our daily challenges. Worse yet, they amplify the loneliness of our journey. I wish people would just listen to people with illnesses and disabilities. And believe us.

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.

Follow this journey on Fashionably Ill.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Why I Lived a Double Life While Dealing With My Chronic Illnesses

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When I say the words “living a double life,” many people with chronic illnesses may know what I mean. I’m talking about the face you put on every day to “pass” among the healthy and try to live successfully among them, no matter how much your body refuses to comply.

In September 2014, I had to abruptly stop teaching because my chronic conditions — postural orthostatic tachycardia syndrome (POTS) and myasthenia gravis — had become too disabling to even care for myself. I had a moment of epiphany when I realized living this double life had only led to more challenges. I began to be honest with everyone for the first time in years. I wrote these words to myself to understand why learning to live authentically, and with acceptance, was the only path forward:

Being on extended medical leave has been a strange ride. I spend most days couch-bound and riding waves of anxiety and sadness, trying to stay on a schedule to keep myself occupied by reading, writing, playing music, existing. I’m also seeing things more clearly than I have in a long time. I sit outside in my yard and think about life and look clearly at the chaos that’s happening around me. I’m still figuring this one out. I know others who are ill or disabled who are facing challenges with living authentically. This is a strange ride indeed.

I realized I’ve been living a double life. Not an interesting or even sexy double life as a secret agent or a superhero. I’ve been living a very boring one. I’ve been pretending to be “well,” to be able to stand, drive, be accomplished and have a career, and then come home on the weekends and be bedridden, unable to do the basics like cook for myself or do laundry. My husband picked up the slack on everything else.

I’ve been pretending to be one of them — living among the well who talk about traveling or doing yard work. Pretending not be on an endless cycle of hospital visits. Pretending not to have just dragged myself off the floor of my office or the bathroom and then walked into a classroom to teach.

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But as I’ve been getting progressively worse this year, I’ve maxed out my credit card on pretending. My body will no longer let me pretend. I no longer have the willpower to keep up the charade.

This is a good thing because now I can try to live a more authentic life. I’ve been lying to everyone and to myself for a long time — lying about what I’m really able to do and who I really am now. Maybe living authentically is easier for others with chronic illness, but I thought I was making illness look good. For whom?

I’ve never been much of a liar because I’m really bad at it. BS-ing is not really my deal. But I can put on such a stellar performance of being “well” that I start to wonder if theater was my calling.

I wanted people to think I could do it. I needed to believe I could do it. There’s too much at stake if I really can’t do it. I wanted to believe that if I pretended long enough, maybe the performance would become reality. Fake it until you make it, right? It didn’t work out for me. It only made me worse. My fairy godmother never came to give me some killer heels and turn this pumpkin into a new life.

But I can’t do it. The independent, ambitious woman I was a few years ago is now wholly dependent on others to get by. And that’s OK. I still use my polite words, “please” and “thank you.” I’m grateful for the friends and family who have shown their true colors and stood by me, and I’m grateful for my husband, who is my hero.

So I’m going to try this authenticity thing. Reality is harsh. It means not driving. It means not pushing myself so hard every day, which is second nature now. It means accepting that my options have narrowed and I may continue to get worse. I’m going to be honest with strangers, friends, family and myself about what I’m able to do moment to moment. I’m going to keep using the electric cart at stores no matter how many times I get dirty looks from the elderly. I’ll use my wheelchair when I leave the house and not pretend to be able to walk and then predictably fail. I’ll use my shower chair with pride. I’m going to remind people that despite being young and having a rosy glow (that’s the makeup talking), I am not well.

It means I no longer care so much what others think, and that is incredibly liberating. I can deal with the stares when I use my wheelchair. I can now pluck up the courage to say, “Pardon me, but I think I’m going to faint. Do you happen to have a fainting couch so I can make this look fabulous?” My illness is an unpredictable beast, and I’m going to stop fighting it so hard. It means dealing with it in silence less and maybe becoming in tune with the world around me once again. The future is uncertain, but I’m getting more comfortable with that. I’m gaining a lot of life experience in the process, and that is invaluable.

I don’t know what authenticity will look like, but I like the feel of it already. I am sick. I am unable to stand or walk for longer than a few seconds. I can’t breathe sometimes. I need to lie down. I am kind of broken. I’m a fighter. I’m a tough cookie. I am smart and educated. I am a warrior, fighting from a seated position with plenty of fluids and chocolate close by.

woman in a wheelchair

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How This Teen With Cerebral Palsy Made Sports History Without Joining a Team

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Nathan Mattick has always loved soccer.

The 19-year-old from Cheltenham, England, dreamed of one day playing on a team, but because he has cerebral palsy and uses a wheelchair, playing for one of England’s club teams wasn’t possible, according to The BBC.

So, Mattick set out to get involved with his favorite sport in another way — he decided to become a soccer referee.

“I looked at the referees [on TV] and I thought, ‘Well, I’m in a wheelchair, but why can’t I do it?‘” Mattick told the BBC in a video.

Mattick’s next step was to contact the sports department at National Star College in Cheltenham, England, where he goes to school. He then got in touch with Gloucestershire Football Association where he completed a course and began training.

Now, Mattick is the first person who uses a wheelchair to become a certified soccer referee in the U.K., Mirror reported. The teen is qualified to officiate both indoor and outdoor games with able-bodied athletes as well as athletes with disabilities.

“My motto is, disabled people can still do exactly what able-bodied people can do, but in a slightly different way,” Mattrick says in the video below from SWNS News in the U.K. “I hope disabled people can get engaged in something they’ve always loved to do. Go ahead with it, you can still do it.”

Learn more about Mattick’s story in the video below.

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How I Found the Best Way to Take Photographs of My Son With Autism

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A photograph of our family taken a few years ago hangs on our living room wall. Our youngest son, Henry, sits on the floor in front of everyone while my husband, Chris, and I are both on our hands and knees. Then our twin son, Noah, rests his body on my husband’s while our other twin son, Isaac, is perched on top of Noah, wearing a million dollar smile.

Tyann Sheldon Rouw's family

Anyone looking at the picture can’t tell it was taken as Isaac sprinted around the kitchen and into the living room. The photographer snapped it just as Isaac leaped, landed and smiled. She was in our home taking pictures for two hours. (Can you imagine anyone with kids agreeing to a two-hour photo shoot?) She needed a family willing to be photographed because she was working on a special needs designation and needed the experience. I think she learned a lot. No, we’re not game for a wardrobe change. No, posing doesn’t generally work. She and her assistant did a nice job. More than 300 pictures were taken, but there were only a handful we considered purchasing. They’re gorgeous pictures — all black and white — and worth every penny. Even Noah and Henry’s stuffed dog made it into a few prints.

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When Henry was a year old, a photographer (who is also a friend) came to our home to take pictures. He took several hundred as well, and one was outstanding (one is all we need, right?) and it now hangs on our wall downstairs. Chris is sitting on an exercise ball, I’m seated on a mattress holding baby Henry and the twins are jumping around and smiling. Against a white wall, it looks like it was shot in a studio; however, it was shot in Isaac’s bedroom. I like to say that most of our pictures are perfectly imperfect.

When we got pictures taken last year at Portrait Innovations, I reserved the first appointment of the day to avoid a long wait. Isaac ran in and out of the session as needed, and he was able to watch cars in the parking lot. The longer we were there, the more anxious he became. It wasn’t the best situation, but it wasn’t a nightmare, either. We had our pictures in hand as the place began to fill up and we were on our way out. They’re not the best pictures in the world, but it was the first time ever we visited a studio. The photos were inexpensive. Nobody cried, not even the photographer.

When we gathered with family for Christmas, we took pictures of the group — 17 in all. Considering there was a toddler and Isaac involved, it went well. He stood near Chris and his cousins behind a couch, so he couldn’t run too quickly. He was smiling. The toddler sat on her mom’s lap. The photo is fantastic.

Last month before family arrived for Henry’s birthday party, I attempted to take a picture of Isaac and me. We needed one for Christmas cards. Only one. He was game for a few self-portraits without the flash. I took them quickly. It would have been easier to nail Jell-O to a tree.

Tyann Sheldon Rouw and her son

After a few minutes, I took a break. Chris was trying to watch a football game, and Noah and Henry were on the couch. Isaac stood up and opened the front door. I learned a long time ago it’s easier to meet him halfway, on his terms. So he opened the door, and I snapped pictures.

This is how to work with my child who has autism. You do things on his terms, when he is ready to be photographed, when he’s in his element.

Tyann Sheldon Rouw and her son

This one I love most of all. It’s all joy. It is Isaac in his purest, happiest state, watching the door open and close. It’s a rhythm and view he has loved ever since I can remember.

Tyann Sheldon Rouw and her son

This is the one we used in our Christmas card this year — it’s the moment in time when everything looks effortless. All in a day’s work.

Tyann Sheldon Rouw and her son

Follow this journey on Turn Up the V.

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Blind Teen With Autism Blows Crowd Away With National Anthem Performance

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Christopher Duffley first sang the national anthem when he was in first grade, performing at his elementary school’s Memorial Day assembly, according to his website. In July 2011 and Sept. 2013, Duffley had the opportunity to perform the national anthem at Fenway Park. On Monday, the now 14-year-old had that chance again, and he didn’t disappoint. The teen, who’s blind and has autism, sang the national anthem for thousands of people before the Boston Red Sox played the Cleveland Indians.

Duffley didn’t speak until the first grade, but his parents then shortly discovered his perfect pitch, according to a YouTube video about Duffley’s life.

When Christopher sings ‘Open the Eyes of My Heart’ he teaches us to not see everything with our eyes,” his mother said in that YouTube video.

Duffley’s performance before Monday’s game was on behalf of Autism Speaks, according to Boston.com. He was selected as one of Autism Speaks’ “10 Amazing Individuals With Autism Who Shined In 2013.”

Watch Duffley sing an incredible rendition of the national anthem below.

h/t USA Today FTW

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