Patient Stories

I Didn't Take Myasthenia Gravis Seriously

 

I was diagnosed with Myasthenia Gravis at the age of fourteen.  When  the doctor first told me I had MG, I didn’t really take it seriously. I  thought to myself “at least it’s not cancer or a brain tumor”. When I  got discharged from the hospital, I didn’t take take my mestinon like I  should of; I only took it when I felt like I needed it.  

A  year after my diagnosis, I became seriously ill. I got sick with  pneumonia and that’s when my MG became more serious for me. It was also  my first encounter with intubation. That was my wake up call. That’s  when I knew I had to take care of myself, when I started taking all of  my medications as directed. I’m now twenty-four, and in the ten years  since my diagnosis, I’ve been intubated thirteen times, and been  hospitalized many, many more. I now have a healthy respect for the seriousness of MG.  I’ve  gotten my thymus removed, experienced plasma exchange and IVIG (which  caused aseptic meningitis), and most recently, I’ve started  chemotherapy. Chemo has helped keep me out of the hospital for almost a  year now. Several years ago, I had a port catheter placed so I could get  plasma exchange. It wasn’t until last year when I began chemotherapy  and went through four doses, that my catheter somehow became infected.  That infection almost cost me my life. 

 I wish I could say that was the only time my life has been endangered with MG.  My journey with this illness it has thought me not to loose faith or take anything for granted.  Even  though everyday is a battle just to make it through the day, it has  taught me to appreciate everything. Before I got diagnosed with MG, I  took for granted everything I did, like showering, changing my clothes,  eating, walking around my neighborhood and talking. And now, I cherish  every single thing I can do on my own. Even though at time’s it’s not  much, it is a victory. I thank God for waking me up the day’s that I  have and even more when I wake up with energy wanting to do something. I  may appear normal and my behavior may look “lazy” or fake to some but  inside, my body is literally fighting itself and it takes everything I  have to fight back.  I have a serious illness and it’s called Myasthenia Gravis and I will beat it!! 

 –Becky Garcia  

Perspective Changes Everything

 Everyone  has a story. Each and every one of us has lived such a different  journey. We all can give a chronicled account of our life, a reflection  of what we have encountered, how we have embraced those experiences and  what we have learned. If we simply view it in a simplistic manner than  we unknowingly get stuck in the story, and never fully embrace what the  journey is all about. 

Here is my story, my narrative account: This  September it will be exactly 32 years since my first encounter with  Myasthenia Gravis, MG. I was awakened one morning to the most unusual  world, a total shift in my visual reality. I awoke one day with a major  shift in my vision, a visual discrepancy that in a blink of an eye never  changed. At first I thought I would literally go mad, as it was so  arduous and intrusive to my life. But, as life teaches us, we can choose  to resist it and fight it, or go with the flow and accept it. I chose  to accept it. Helen  Keller, one of my most admired and awe-inspiring authors, led me from a  dark place to the light. Her spiritual engagement with life, her  uplifting and inspiring attitude taught me so many lessons about  embracing the unknown, moving beyond any circumstance with strength and  perseverance.  We can choose to sit in darkness, or we can move to the light and embrace those shadows. I chose the light.

 From  there I noticed many symptoms that would move in and out of my daily  life like the ebb and flow of the ocean. I was affected by many outside  changes to my body from my eye drooping, severe and unrelenting fatigue,  chronic muscle weakness, difficulty standing and walking, loss of  balance, difficulty swallowing and breathing, choking in my sleep,  memory and cognitive issues and more. With the initial onset of these  symptoms I was diagnosed with Multiple Sclerosis, later to be retracted.  Even though I went to various neurologists, I was only diagnosed 3  years ago with MG. Myasthenia Gravis awakened me to how to appreciate  life. Within  every situation there is a seed of good, no matter what the  circumstance is. Our minds are powerful creators, and when we  continually focus on the compounding aspects of any challenge we become  overwhelmed with the adversity. With that, we now take the never ending  cycle of the physical, emotional, psychological and spiritual pain, and  we compound it and create a place of being a victim. That place creates  suffering. Do you really want to suffer? So, how does one learn to deal  with the many aspects of any adversity? 

I  am fortunate that my husband, Gary, is a life and mindset coach. With  his mentoring and my ongoing studies, I have been able to see the ‘seed  of good’. That is not to say that I never go to a place of sadness or  concern, I simply choose not to stay there. The best analogy I can  describe in this circumstance is to think of a ladder and its rungs. You  cannot go from depression or sadness to happiness and joy in one step.  It is one step at a time. So, how do I get there? I pay attention to all  the subtle nuances in life. I open up my journal and write down what I  noticed for the day, the light streaming through my living room or a  butterfly fluttering about my garden. Often it is the simple things in  life that bring us such peace, harmony and joy.  Also,  I have found that when I am busy giving to others, the lightheartedness  of giving unconditionally, pure from the heart, it lightens my pathway  with joy and my burdens feel so much smaller. Be so busy giving that  your troubles become small, and your love for others transcend  everywhere, a reflection right back to you. Every time you touch  someone’s soul, you have enlivened yours, awakened love everywhere. Gary  has been a source of inspiration, a guiding light to show me the  advantages of using effective listening tools. Over time I have learned  the difference between being an active listener and wound bonding. In  wound bonding the other person shares their story. We may think we are  showing empathy, but in reality we are simply comparing our stories, a  very ineffective way to listen, to show compassion and empathy. To be an  active listener: simply be available, be quiet, listen, reflect back  what you heard and validate. 

Be sure to ask them if there is more. It is  not about fixing the situation. It is not about you. It’s about the  other person. This tool is so important for the person dealing with MG  or any situation, and for their friends, family members, and caregivers  to actively use it. Taking it a step further, it is vital that the  person that is dealing with the fluctuations of MG or any adversity  allow the other person to open up about their feelings. It is so  critical. We often forget that our caregivers are hurting too, and the  compounding affects any condition or disease will have on others. To  receive understanding, compassion, empathy and love, you have to give it  too!

 During  the times I fall down emotionally and spiritually, through the grace of  my beliefs and relationship with God, I feel renewed again. Without  hope, we yearn for things we desire, perhaps to recapture the place we  once were totally healthy and fall short in our faith and create that  victim mentality. If we lead with hope then we have a sense of wholeness  that all things are possible. I am a hopeful romantic about life, all  aspects of life. I believe that all things are possible. Even if I never  go in remission, I am led to create the best possible life with  whatever my day may bring. Here’s to celebrating life! 

Caryl Loper

It Felt Like the Beginning of a Nightmare

 My life seemed to be finally turning around.
My husband had passed away, and also my father within two weeks of each other. It was very rough. My whole life had changed. I bought a smaller home and downsized and also started an antique booth with my friend.


Life seemed good.  I was working at the antique shop in December of 2014 when suddenly I couldn’t talk right.  My words seemed to be slurred and hard to get out. I felt weak, just not myself.  It was the beginning of a nightmare.  Three  ER visits and then I was finally hospitalized. I spent both Christmas  and my birthday in the hospital wondering what was wrong with me. I  couldn’t eat, could barely talk, walk and breathe, or see correctly. It  was frightening beyond belief!  Then came that fateful diagnosis.  “You have Myasthenia Gravis.” I  was happy for a diagnosis but very scared. It was going to be a long  road ahead and I knew it well. You just fight with all you’ve got and  you pray. Your life completely changes forever.  They tell you it’s manageable and you’ll get your life back. That’s so hard to believe when you can’t even lift your head.  

So many doctors and nurses do not know very much about this disease, which is just as frightening as the disease itself!
We have spread awareness each and every day because it is essential to our survival.  We matter! They need to hear us! We fight battles every day that no one else sees.  I am better now with Mestinon, Cellcept, and prednisone. I also have
IVIG every month. Life with MG is not easy and every day is a challenge. I have met beautiful  people who are so strong and who encourage me along the way.


We Snowflakes always stick together.
There WILL be a cure one day.♡
Never give up.♡  

Karen Amacher

Myasthenia Gravis Almost Stole My Smile

 Early  in 2008, I started experiencing symptoms of MG. I have a mild/moderate  case of MG so the symptoms began occurring infrequently. Because I was  unaware of what MG was, I was also unaware of the symptoms and may have  been experiencing more than I actually remember. My symptoms became more frequent and I finally went to  my doctor. He took one look at me and sent me with an emergency  referral to a neurologist. Whether luckily or unluckily, I was diagnosed  with MG in the summer of 2008. I say that I was lucky because MG, like  other auto immune diseases, is difficult to diagnose. I happened to test  positive for the Anti-MuSK Antibody Testing which guaranteed my  diagnosis. Unlucky because, well, I now knew that I had a chronic  disease with no cure. 

I am now on medication {that I have to take everyday}  and am pretty stable. I see my neurologist once a quarter. If not on my  medication, I can barely keep my eyes open, have occasionally had to  pull over because of blurred vision, sound like Elmer Fudd, have so much  difficulty chewing and swallowing that I immediately lost 20 pounds,  have arms so weak that I have to rest from blow drying my hair and  sometimes experience so much fatigue that I cannot get out of bed. One  of the things that affected me the most is that I felt as if MG had  stolen my smile. Because it was so hard to smile, I would often make “funny” faces in photos so that I wouldn’t look awkward.  I  would get upset because I knew that I couldn’t smile and my husband  would say, “Make a funny face!” because he knew that was easier for me. 

I have now been dealing with my disease for five years. I have had to make major  changes in my life. I have had to really listen to my body and do what  is best for me so that I don’t crash and burn in the future. I have made  plenty of mistakes. I have messed with my medication and paid  the consequences. I have had to deal with the side affects of the  medications. I have had to miss out on important things because I can’t  move. I have tricked myself into believing that I am okay and have gone  backwards in my symptom management. But I have also really gotten to know myself: my body,  my capabilities, my capacity, my resilience. Because I am experiencing  this on a daily basis, I have learned that I don’t want to miss out on  life.


I don’t want to have any regrets. So I am forced to live a life of balance, which I am finding is a good thing. And I have found my smile again. 

Leah Nash

I Thought MG Was No Big Deal

  2012  – While driving one day, the white lines on the road seemed to multiply  and I wasn’t sure of the lane I was driving in. Shook it off and went  home. The next day I was playing golf and while looking down at the ball  noticed that there were 2 balls… not a ball and a shadow but 2 balls. I  had to reach down to determine which one was real.

 Since I was experiencing vision issues I went to an ophthalmologist.  She sent me to a neurologist. Neither doctor knew what was wrong. After  multiple visits the ophthalmologist sent me for a blood test which  provided her with the information to properly diagnose me with ocular  Myasthenia Gravis. She said I should take the test results back to my  neurologist – which I did. The neurologist prescribed 40mg of prednisone and 60 mg of mestinon 4  times a day. My symptoms went away. The doctor weaned me off the  prednisone and after a while the double vision returned. He increased my  mestinon to 120mg 4 times a day and my double vision ceased. I was on the medication for a few years, no more double vision, and continued all my activities as before. I did not think about MG or was concerned about it. Subsequent follow ups with the neurologist consisted of checking for arm and leg weakness…there was none. I was fine. 

But in October 2015, I started to have some swallowing issues.  Nothing too dramatic, just sometimes I had a problem swallowing a piece  of food and I would regurgitate it to clear my throat. Planning on going  to see family in Colorado for the holidays I self prescribed some  prednisone for myself.
No big deal, right?

 I developed a cold but still flew to Colorado. The temperature when I  boarded the flight in Florida was 87 degrees; when I landed in Denver  it was a mere 6 degrees. Over the next 24 hours my swallowing became more difficult, my cold  got worse and eventually I had my daughter take me to the ER. While  answering questions checking into the ER my voice started to slur to the  point that I was not intelligible. 

I was admitted into the ICU with  pneumonia, and because I told the ER doctor I had ocular MG, he had a  neurologist see me. By then I could swallow nothing, speech was labored  and my oxygen level dropped. Although they attempted to give me medication with apple sauce,  pudding, etc…. I could not get it down. They eventually put a tube down  my nose into my stomach to provide me with medication and nourishment. I  fought off being intubated and kept my oxygen level up to an acceptable  level. I then had IVIG every day for 5 days, they gave me 120 MG of  prednisone (and told me to go off it when I left the hospital), 1000mg  Cellcept 2x a day and gave me antibiotics to fight the pneumonia. I remained in ICU for 7 days and a regular room in the hospital for another day.

 MG was no longer no big deal.

 I rested in Colorado for another week before flying back to Florida. Since then, I am now on 20 mg prednisone and still on the 120 mg  Mestinon 4x a day as well as the Cellcept, I see an MG specialist and am  plugged in to a local support group. I feel I have a new normal now. I play 9 holes of golf twice a week,  limit my other outdoor activities and rest when I can. I eat softer  foods, and much slower. I have not had a steak since 2015, as my chewing  gets difficult after a while. I also eat earlier than I used to.  (Nothing but soft foods, i.e. pudding, yogurt, etc. after 7pm.) When I  look at a menu, I do not look at the description of the food as much as  thinking about how chewable it is and whether or not I could swallow it. 

There are some days when I just feel weak. Since I am retired – and  no commitments to speak of, I am able to take those days as my body  needs me to and just take it easy. I limit my evening activities and  sometimes will be out with friends and just participate by listening.  Whereas I was once the center of attention, dominating conversations I  now limit my talking in the evening. I still sometimes have slurred  speech but nothing I can’t deal with. I have MG and am very conscious of it.


I think before I act and live with a “new normal”.
MG is no longer just no big deal. 

Stan Kotzker 

Something Was Wrong But No One Would LIsten

 October 2012 was one of the happiest times in my life. I had just  married the man of my dreams in September. We had a wonderful, relaxing  honeymoon and I was floating on cloud 9. I remember during this time the  way I pronounced my words seemed “different”. I was having an issue  with my wisdom tooth so I assumed this was the cause. Shortly  thereafter, my speech was completely slurred. I scheduled an appointment  with the oral surgeon (still thinking it was the tooth). When I told  the oral surgeon about my slurred speech, he refused to extract the  tooth. He suspected Bell’s Palsy. He wanted me to get it checked out.  I’m glad he did.

 Over the next few weeks, my symptoms progressed fairly  quickly. Slurred speech was accompanied by difficulty swallowing,  weakness in my eyes, difficulty chewing, weakness in my neck and  shoulders. I made countless visits to my primary physician and the ER. Finally,  they diagnosed me with anxiety. That’s right; anxiety. My symptoms were  “apparently” the result of stress and I was referred to a psychologist  and given anti-depressants and Xanax. Hmm, how can this be stress when I  am overwhelmed with happiness? I’m a newlywed for goodness sake! I knew  deep down that what I was going through was not the result of stress.  Something was wrong and I felt like nobody was listening to me.  I received a referral to a Neurologist and had several MRI’s and CT  scans. In my mind, I was hoping for an answer, but I really didn’t want  to know. I felt that whatever they found would determine my fate. God  became my best friend. He gave (and still gives) me a sense of peace  because I know that he protects me. The neurologist decided to give me  muscle relaxers (big mistake). She could not pinpoint what was wrong. I  kept a journal of everything I was experiencing. Every time I pulled it  out to explain my symptoms, I felt like I was being dismissed. I was so  proud of myself for keeping a journal. I thought this information would  be helpful for doctor’s to figure out what was wrong with me. Their response made me feel as though I was burdening them. 

Finally, the neurologist suspected MG and had me do the blood work. I  worried and worried and worried some more. I was scared of MG. As I  read about it, I automatically assumed that a surgeon was going to split  open my chest to remove my thymus gland. The test results came back and  I got that fated call. “Good news! You don’t have MG. There is nothing  more I can do for you so I’ll refer you to rheumatology”. I just want to know what is wrong with me! Somebody help me please!  Of course, the rheumatologist drew thousands of tubes of blood to  test. At least that’s what it felt like. And of course, nothing was  found. She referred me back to neurology and guess what else she said?  You guessed it. “Maybe you’re just experiencing stress.” Would I never  get my answers? I faithfully met with the psychologist. She taught me deep breathing  techniques and ways to relax my mind. Thankfully, the psychologist must  have a medical doctor sit in on the counseling sessions. The medical  doctor knew something was wrong. She decided to put me on 60mg of  prednisone for 1 week. After day 2, my symptoms were clear. Yessssss! I  can speak, I can swallow, and I can chew! This doctor was a God send. She knew it was something autoimmune and told me to contact her if my  symptoms clear up. I was symptom free for about 3 weeks. Then, the  symptoms slowly started coming back. I received prednisone again. They  cleared up, but not as much as the first time I was given a dose of this  demon drug. Eventually, all of my symptoms came back, this time with  full force. Only this time, I now was able to see two of everything.  Cool, right? Not! Imagine driving with double vision and not knowing  which lane you’re in. I was hospitalized again. The neurologist in the hospital was positive it was MG. I told her  that I was tested and that I didn’t have it. She requested my records  from the initial neurologist. She was overly ecstatic when she told me  that I did in fact have MG. I must admit that I was happy too. I finally knew that what I was experiencing had a name.

 It was not stress, it was Myasthenia Gravis. She thoroughly reviewed  the results of my initial test. She pointed out that I was MuSK  positive. The first neurologist missed this. Do you mean to tell me I  could have been diagnosed for 4 months, but she missed it? I immediately  started on high doses of Prednisone (100mg) and CellCept. I remained in  the hospital for 1 week. I was discharged on a Saturday and ended up  back in ER on Sunday. Apparently, I developed the flu and this  exacerbated my symptoms. I was treated for MG. This time with IVIG and  was give Tamiflu for the Flu. Another week in the hospital went by. I  was discharged and found an outpatient neurologist to follow up with. My current neurologist noticed that I still had some weakness after  my bout with MG and the flu. He decided that I needed plasmapheresis. I  did this for 5 days. It took several weeks for me to regain my energy. I  felt much better once I did. Finally, my MG was under control. Then  life hit me with another curveball. I had a near death experience when I  almost passed out due to having 4 blood clots in my lungs. Fast  forward, no clotting disorder was ever found. My hematologist was only  able to conclude that the prednisone thickened my blood and caused the  clots. I am on blood thinner for life. 

My MG is in remission. I still  suffer from fatigue, but I am an MG warrior! 

Tashana Siller 

My Teen's MG Story

 I’m telling my story as a parent with a child who has  Juvenile Myasthenia Gravis.

 Let me introduce myself. My name is Felicia  Smith, and I too have Myasthenia Gravis. This story is not one that’s  easy to write. It’s been a long struggle of things I never wanted or  thought my child would have to endure in her life. It became official in 2014. She was only 12. My daughter had my horrible disease. I was mad. I was angry. I cried and I felt guilty, so very guilty for  giving her a life long sentence that I knew would always be a  challenge. Me being sick was one thing, but watching her suffer,  watching her while knowing what the outcome of this disease is, was  heartbreaking. She had grown up watching her Mommy be sick her entire  life. How much more harsh can life be? Why her? Why us? A mixed bag of  emotions as a parent, that only a parent who knows the disease inside  out could understand.

 We had been going to several doctors over the course of three years.  You see, she’s been down the road of unknowns herself. The doctors only  saw a child who couldn’t explain to them what was wrong. She only knew  she felt bad and that’s what she told them, over and over. It became a  waiting game for us. 

We waited at endless doctors offices, we  waited in hospital rooms, we waited on tests, we waited on labs, we  waited on answers, we waited for our daughter to be a kid. Most of all,  we waited on a diagnosis. It became very evident that Savannah  was tired of waiting. She dreaded yet another visit, another poke with a  needle, another doctor telling her they couldn’t find anything wrong.  We would make it to the car and she would cry. She would cry out of fear  and anger and so would I. I laid awake at night crying for my child.  Crying to God, certain He had forgotten my baby and me. I was becoming  angry with Him. I myself was becoming bitter to every doctor and nurse  we saw. They treated her as if she just needed to not think about how  she felt and try to be more active and gain more friendships. 

I will never forget the first hospital stay with her, still without a  diagnosis. I was very ill myself with my MG and hadn’t left her side in  the hospital. As you can imagine I am weak and as exhausted as she was.  I had mentioned to one of the doctors that I had MG, can they please  check her because of her symptoms. I got a rapid response. “There is nothing wrong with your daughter, you just WANT her to have the same disease you have.  She just needs a better sleep pattern and to be on public school and  not home schooled”. What just happened? Were they serious!? I lost my  cool that day, I was no longer the complacent mother who was doing what  the doctors told her. I was a mother bear, an angry one who was woken  too early in the spring. I went into attack mode. I lashed back like I  never had before over my child, enough so that we were dismissed from  the hospital. I admit, it is not my proudest moment, but looking back,  it was the best thing that ever could of happened. We kept pushing. Kept looking, seeking out all pediatric doctors we could. Every single one was a dead end. No one would listen to my thoughts on MG, telling me it wasn’t hereditary that I was over thinking this. Along the way she was diagnosed with Juvenile Arthritis. I thought I  had an answer, albeit not a great one. It comes with its own challenges.

  We started treatment and still, I saw the signs of MG and mentioned it  to her rheumatoligst. He assured me once again it was just muscle  weakness from her JA and she needed to build up muscles. I wasn’t happy  with his answer. I kept seeing other doctors outside of his care. I  finally took her to the retina specialist who had taken a chance on me.  After all, what did we have to loose? I said, “PLEASE look at her!” I  begged him to give her the mestinon and see if it worked for her too. He  gave us a script for a cat scan to check her thymus and for mestinon.  Her thymus was indeed enlarged and the medicines were working! A simple CT and a listening ear gave us answers we were desperate for! We got her into the MDA clinic to see Dr. Weiss. He looked at me and  said, “I don’t know how they missed this. I can’t believe all they have  put you both through”. We couldn’t believe it either but it was nice to  hear a doctor say it. She had a complete thymectomy in November of 2014. It was so hard  watching my baby suffer and go through pain that only I, her mother,  would ever understand. 

She has an electric wheelchair for bad days and  sadly good days are still few and far between, but we cling to hope that  she will gain remission. So we are back to waiting, but waiting on a different ending. All of this is proof that a mother’s intuition is never wrong. Never stop fighting for your child. Be their voice. Felicia Smith, Mother to an amazing and a strong, little warrior with the spirit of a fighter deep down inside. 


I Am Not the Same Person as Before MG

MG Hope: " What is Myasthenia Gravis to you?"

Tyler M : " Myasthenia gravis is a neuromuscular/autoimmune disease that affects the way I  walk, see, smile, and breathe. It is a disease that completely changed  my life in both good and bad ways. It not only affected my physical  being, but my emotional and mental being."

MG Hope: " How has it changed your life both positively and negatively? "

Tyler M: " MG  has changed my life in many ways, both positively and negatively. On  the negative side I struggle with daily tasks, I’ve lost friends, and I  can no longer do things spontaneously. I struggle with walking quite a  bit and use a cane. Most of the friends I had before I became ill slowly  faded out of my life. They just don’t understand MG and what it’s like  to live with a chronic illness. They expect me to be able to do  everything I used to do and I just can’t. That has been difficult for me  at times. I would love to be called the day of and go do something with  friends or just hangout, but I can’t really do that anymore. Everything  must be planned out, is it an accessible place, are there  stairs/elevators, will I have to walk far, will I have to stand or sit  for too long, can I drive there (how far is it) and is there handicapped  parking?  

 On  the positive side, I have met so many wonderful people that have been  extremely supportive and helpful with my questions. I have gained access  to what sometimes feels like an exclusive club, the MG community.  Another positive thing is that I’ve slowed down (against my will) both  literally and figuratively, and have learned to appreciate the little  things in life. I’m so grateful to have met such wonderful people that  not only understand MG, but understand me too, like my online friends,  but also some friends from college. They’re the best. Do I wish I wasn’t  sick? Of course, but would I change my experience? No." 

MG Hope: " MG hasn’t kept you from pursuing a college education. How do you make that work for you?"

Tyler M: " Before  my diagnosis, I had started my undergraduate degree, a BS in Computer  Information Systems and Technology. I was a very active member of my  campus community, participating in various activities, being president  of our LGBTS Alliance, serving as an orientation counselor to incoming  students for a few years, working a work study job, and taking 12  credits (full time) per semester.    

 While  trying to get diagnosed, I was stuck using a powered scooter to get  around our campus, even though it is tiny compared to most. My grades  slipped a little and I had to withdraw from most of my courses, but I  stayed in school throughout it all. I was determined to finish what I  had started, taking just 3 credits a semester in an effort to get the  120 credits needed to graduate. I was also still in my work study job,  however I soon had to quit as I couldn’t make it to work much and do one  class a semester.  

 After  my diagnosis, I’m still in college part time taking 3 to 6 credits a  semester. I do receive accommodations and my professors are usually very  understanding of my illness. I ask for leniency with attendance and  occasionally extensions to get work done. I live on campus with an  amazing roommate. He’s very understanding and accepting of my illness  and me in general. He does a lot for me, including cleaning the dorm  (most of the hard work), and taking out the trash and recycling as I  can’t carry it long enough to get to the dumpster/recycling bins. While I  have slowed down quite a bit, I’m still president of the LGBTS Alliance  which is often a lot of work, but my fellow officers are very helpful  and often take over when I can’t be at an event or meeting. I’m also  part of a diversity committee to the president of our campus and have  been since it was formed in 2013. While I occasionally need my powered  scooter still, many days I get around with just my cane. Overall college  is a lot of work, but I’m determined to finish what I started and that  determination is what drives me to keep going."

MG Hope: " What advice would you offer someone else with MG who is trying to achieve their dreams in spite of it all?"

Tyler M: " My  advice would be to take it slow, know your limitations, and ask for  help whenever you need it. I understand that may take some time, but I  personally believe it is necessary in order to keep going."

MG Hope: " What do you wish others understood most about MG and your life now?"

Tyler M: " I wish others understood that I am not the same person I was before my illness. Any  chronic illness can change your entire being. I wish they understood  just how difficult it is to be exhausted all the time, to be weak most  days, and still have to function. I wish they knew the fatigue that  comes with myasthenia gravis and the fact that it is a chronic illness  that is not going to go away."
 

Myasthenia Gravis Changed My Whole World

 Myasthenia Gravis came and took my breath away, quite  literally. Just shy of my twenty-third birthday, my whole world changed.  In the beginning of August 2011, I was running on a beach with a  glorious tan, laughing and carefree with my younger cousins. My future  beckoned to me, the possibilities endless, my dreams just in sight. By  the end of August, I was in a wheelchair, paralyzed in the legs and  wondering if I was ever going to walk again. The ensuing weeks were  terrifying and exhausting. They were also only the beginning.

 MG propelled me through a rotating door of frightening  non-stop ER visits and clueless doctors who berated me, ignored me,  mocked me, threatened me and dismissed me. I endured endless testing and  sardonic questioning that ultimately left me in a place that caused me  to question myself, my own sanity. Even after my hard fought diagnosis, I  struggled to find a sense of balance. I was overdosed or under-dosed,  misunderstood and afraid. Each doctor had their own opinion and none  could agree with the other. All held one unifying opinion, however. Each  emphatically believed that I was exaggerating, that I could not  possibly be THAT sick. After all, Myasthenia Gravis was “easily  managed”, right?


 I did not learn to respect where Myasthenia Gravis can take you until  I was faced with my first life and death encounter, until that  agonizing span of time where my life slowly ebbed away as my mother held  me choking and gasping in her arms in a small hospital room, surrounded  by professionals perplexed at how to help me. Each time a crisis washed  over me, I learned anew what fear was, what life really meant and how  fleeting it can be. I learned right then and there the foolish frailty of believing that MG was ever a simple disease for the majority it inhabits. 

 I will always be a Myasthenic. It quite literally runs through my  veins and is in my blood. That thought used to frighten me. While I must  acknowledge the hell of MG, I too am given to honor the blessing that  it can be. MG taught me that moments matter, that we are not promised  the future and that God can bring beauty from the ashes. It has been a  refining fire in my life that has brought new depth and a better  understanding of my fellow warrior. It has also propelled me into the  heat of the fight for awareness, for keen understanding on what MG often  is, not what we have so long believed it to be. MG also served to hone  my passions I once thought long lost to a rare disease, into a desire to  showcase the humanity behind our suffering so that solidarity and hope  may shine through. 

Myasthenia Gravis is just the beginning for me. 

 Rebekah Dorr