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

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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

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I Thought I Was Just Tired

I noticed how tired I was getting in March 2011. I never would sleep on a plane yet during one particular trip, I slept all the journey from Malaga to Manchester. I just thought it was late nights and the sun that had tired me out. Then, around late June, I started becoming aware that my vision was a bit blurry in the afternoons, even would nap in the afternoon and still, I slept through the night.

I thought I was just tired.

I observed that the after noon brought changes to my vision. I was getting worse and someone said my eye was closing yet I couldn’t feel anything. In the evening I noticed if I lay down in bed watching TV, I would see double. Again, I just brushed it off as tiredness. Eventually, it was no longer just my eyes that were being affected. Sometimes, I would walk up stairs like a toddler .

I made an appointment with the opticians to check and see what was happening to my eyes. I work at a computer with a bright light above me. I thought it was computer glare!! But the opticians were concerned. They asked me to head straight to my doctors as they thought I was having a stroke!

Luckily, my doctor was in reception and saw me straight away in which he said he would contact a neurologist but that it could take up to three weeks! I actually had to ask for a sick note until I saw the neurologist!

A week later I was lucky to visit the consultant who looked at me and said, “you’re either having a stroke or you have a tumor. What idiot didn’t admit you into hospital?! ” He then stopped and explained to me that his best mate actually is assigned specialty care to a rare disease and asked me if he could check on my strength. The doctor proceeded to say, “I think you’ve got Myasthenia Gravis”.

As I was being admitted to the hospital, my mind was whirling. “What the hell is this? Heaven knows how to pronounce it!”.

After being tested to check that I had it, (positive from a special medication and observation), I was allowed home after four days. Six weeks later I was back at work but found the stress of my job caused unwelcome changes in my body. Brain fog overwhelmed me all while trying to getting my head around this strange, new illness. I became depressed and alone. I had to give up work as I had no support there.

Now five years down the line I’ve had lots of different medications but slowly but surely I am learning how to cope with MG.

I still find it hard to explain why I can walk slowly one day but have to walk a bit faster the next moment due to feeling my muscles weakening.

To myself and others, it doesn’t seem to make sense. Standing still causes problems. Climbing stairs is hard one moment but easy the next. My face muscles are an obstacle that make up doesn’t cover. But I ignore what I can’t do and live my life the best I can.

After all, how can you explain to a two year old grandson that Nana just can’t do it as he saw you do it the other day?

– Louise Monk

Something Was Wrong, But I Couldn’t Get Anyone to 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
#IhaveheardofMG

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I Have Learned That Giving Up is Not an Option for Me

I was diagnosed with Systemic Lupus as a young mother, so I have lived with chronic illness and pain for a long time. Through the years, I have suffered greatly and have added many other diagnoses to my list of conditions, some of them both devastating and debilitating. Other than one short stretch of time when I was in complete remission, I do not think I have had a single day when I was free of pain.

During my better days, however, I enjoyed relatively good health, maintained a career that I loved, and participated in hobbies I enjoyed. My husband and I were Ballroom and Country/Western dancers, and even owned our own dance studio at one time. But by mid-2011, my health began to decline, and for two years, I was so weak I had trouble holding my head up, could scarcely turn over in bed, and had difficulty opening my eyes. Speaking, chewing and swallowing were difficult, and I was alarmingly thin at only 89 lbs. I saw three different doctors before I was finally directed to a Neurologist, who recognized what was wrong with me at our very first visit. Rather than dismissing me, this doctor listened. And because she listened, she ultimately saved my life. She ordered blood tests, nerve studies, pulmonary function tests, a CT scan and a deep muscle biopsy; once she had completed her testing, I finally had a diagnosis. I have Myasthenia Gravis, an autoimmune neuromuscular disease caused by a breakdown in the normal communication between nerves and muscles that results in severe weakness. Myasthenia Gravis (MG) affects the voluntary muscles, including those needed to lift the arms, walk, talk, chew, swallow, and breathe.

I began taking Mestinon, a medication that permits freer transmission of nerve impulses across the neuromuscular junction, and while I saw some improvement, it wasn’t quite enough. Because I have a primary immune deficiency, I cannot take prednisone or chemotherapy, both of which suppress the immune system, and I began IVIG (intravenous immunoglobulin) infusions in January of 2013. I now receive these life-saving treatments on a weekly basis.

To tell you the truth, it isn’t easy living with Myasthenia Gravis. And honestly, some days, even breathing seems to take more effort than there is energy to muster. I have grieved for the loss of what once was and for what seems will never be again. That being said, I have learned much through my journey with chronic illness, and I am a stronger and better person because of it. I have learned that whether or not I understand the illness, the pain or weakness I feel at any given moment,

I still can choose HOPE and have an optimistic outlook for my future, however long that may be. I have learned that how I respond to my illness can carry over in subtle (and even not so subtle) ways to affect everyone around me, even when I don’t realize it. And I’ve also learned that how others react to my situation can affect my attitude as well. I think it’s okay to be angry or frustrated or even depressed from time to time, as long as we don’t harm others or linger too long in any one place. It’s too easy for bitterness to take root, and living a life of bitterness is really no life at all. So I have learned that every now and then, I have to do an attitude check.

Every time my husband sits by my side without a dance partner, my heart breaks. Every time we’re in a position for him to get to dance with someone and I watch from my power chair on the sidelines, I cry. BUT…I still hold on to the notion that I WILL dance again, that I WILL be strong enough to walk on my own without falling down, that I WILL feel good once again.

My husband knows this about me, and is my champion. He is the one who is there for me no matter what, taking up the slack when I feel too weak to go on, while understanding that I still need to be able to live. So we plan cruises and we go for drives, and even head to the mall once in a while so he can walk and I can zip through in my power chair, looking at all the cute styles in the windows. Together, we’ve decided that we will do whatever it takes for me to live as normal a life as possible. There are many days when I am too weak to do anything but lie in my recliner and rest. But even there, I am committed to involving myself in support of others and spreading awareness, to reaching out to others that are hurting, to praying for those in my life whom I love and who are going through difficult times. I know what it is like to be afraid that nothing will ever get better. But I have learned that giving up is not an option for me.

As a woman of faith, I believe that God is turning this situation into good, not just for me, but for everyone with whom I come into contact…my family, my friends, even strangers. Most of all, I have learned that neither my identity nor my significance lies in my health status, my career, or whether or not I am capable of doing the things “normal” people do. And I believe this to be true for everyone. We are each significant and have purpose because we are individuals, created by God. We are His masterpieces, intricately and beautifully put together, and nothing slips by Him unnoticed.

Kathie Lea Bradfield

Age 60

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MG Warrior, wife, mother, and “Nah-na”

My Child’s Battle with Juvenile Myasthenia Gravis: Savannah’s 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.

 

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My Whole World Changed

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 endure 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

Myasthenia Gravis Warrior since 9/22/11

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The Ever Changing Journey of Myasthenia Gravis

Myasthenia Gravis, oh the two words that changed my life when I was 16 years old. I never knew the impact that these two words would have on the life I had planned for myself. I sat there in front of the mirror at 16 trying to do my makeup, wondering why is my vision was doubled. Why was my right eye not moving? I thought to myself, “I must have simply read too much”. I had worked so hard in school, and was in every activity you could think of. I held a 4.0GPA and believed without a second thought that I was going to make a difference in this world. Never did I imagine it would be through my own story because of these two words. Myasthenia Gravis robbed me of so much. I graduated my sophomore year first semester because I went three months not knowing what was even wrong. I just knew I went from normal and healthy to drooling, double vision, facial droopiness, and generalized weakness and not able to chew over a period of 3 weeks.

Never would I have imagined what was going to transpire of the course of the next three months much less the rest of my life. I went to the ophthalmologist thinking that I needed glasses, and had a lazy eye. It wasn’t until he examined me and then raced out of the room and began arguing with the MRI outpatient office to do my scans NOW that I realized this wasn’t me reading too much or studying too hard to keep up with my 4.0 GPA. I finally realized it was something truly wrong that was beyond my control.

I remember the first MRI of what would be many. Four hours in a machine and still no answers. Within three weeks I was drooling on myself, had double vision, and was having a hard time swallowing, along with general weakness, and droopiness on right side of my face. Still, after numerous doctors and specialist I continued to spiral downward. Until one day a doctor passing through Texas Tech University did a tensilon test and finally got a diagnosis of Myasthenia Gravis. I was the first person in my age and sex to be diagnosed in ten years. As I heard this diagnosis and all that it entailed, I remember feeling happy and relieved, but at the same time I was scared. Now twenty years after my diagnosis and many different therapies that worked for a brief time and then failed, I have epitomized what this disease can do to a person. I went through many therapies including mestinon, mestinon timespan, IVIG, and prednisone. IVIG caused me to go into three comas and acquire reoccurring spinal meningitis. I felt so overwhelmed and cheated. I had worked so hard to beat the odds and make an impact in this world.

I am now learning how to live with it at a new stage in a new way. It has steadily progressed and is now affecting my respiratory system. Being intubated and on a vent and fighting doctors over a well established and proven diagnosis and against psychological diagnosis is just part of my everyday life. The medications for this disease are relentless and are even worse than the disease itself at times. The publications that I read are heartbreaking because the correct literature is not out there. True in that the disease itself can kill you but so can the therapies. It is a blind, double edge sword. We are our own advocates and we are together learning new things and defying the odds. Our struggle is real and at times it is through the ugliness of the disease that we learn the true meaning of strength and empathy. I AM THE FACE OF MYASTHENIA GRAVIS. I AM A SNOWFLAKE. I AM A SPOONIE and I AM OK WITH THIS, because this is my life and this disease, through its ugliness, has made me the person I am today.

It has taught me well beyond anything I could have ever learned in a book, on the path that I had planned for myself all those years ago. I will never give up and I will continue to shine awareness on this disease in hopes that my story will not only inspire another snowflake but also let people of the healthcare community and nonprofit agencies realize that this disease is life changing and sometimes life taking. The only thing all of us have in common is the fact that in each and everyone’s stories we bring light to the unknown rare disease and eventually through our struggles and our own perseverance, a cure will be found so that many after us will have the chance to see a cure.

– Genieva H.

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Something Was Wrong, I Just Didn’t Know What

The first symptom I experienced of Myasthenia Gravis was while I was on vacation in August 2013 on a hike of a mile and a half in beautiful 70 degree weather. I was worn out after less than half way through, which seemed odd. I was also having neck problems, having to prop up my head with the palm of my hand when I got fatigued. I did not tell people about the neck problems because I was embarrassed that I couldn’t even keep my head up!

As months went on I had unusual symptoms of fatigue. When mowing my small front yard I would have to stop and rest before finishing. I didn’t understand what was going on. I was 67 years old but in good shape. A year ago, I could have worked all morning without stopping to rest.

I told my general physician I had “shortness of breath” when doing simple physical things. I explained it was a “step change,” a sudden change. He dismissed that it was a sudden change and said it was typical of someone my age with a desk job not getting sufficient exercise and that I should take 20 minute walks after dinner at least 3 times a week. So, I started walking as suggested and really began to struggle. (Note: Telling the Dr. I had shortness of breath was misleading — the real problem was I had muscle weakness which led to shortness of breath. MG is not a cardio-vascular or lung problem, it is a muscle function problem!)

I started to wonder if maybe I had a heart problem. The cardiologist did the full series of tests which showed I had basically a healthy heart, no change from when tested 5 years previously. I was perplexed.

We went on a vacation in April 2014 where we were up in the mountains and I could not walk very far without stopping to rest which I attributed to altitude sickness. The only problem was, I also had this “altitude sickness” at sea level!

My wife and I went to the gym 3 times a week where I did 6 – 8 basic exercises. I would be finished in about 15 minutes but would then have a real struggle with just walking back to the car! I kept saying, “I know something is wrong with me!”

It got to the point that I had to stop and rest when walking about 50 yards from my car to the office door. I had to support my head and neck when walking. My speech started to slur when I tried to pronounce multi-syllable words, and like Porky Pig in the comics, I would stutter and then change to a shorter word! My vision was fine when driving into work in the morning, but would get blurred when driving home after a day at work. I ended up losing about 20 pounds because my swallowing became an issue and I was afraid of choking, so I would only eat half of the meal.

I was masking most of my symptoms because I didn’t want people to think I was some kind of wimp/whiner. Turns out this greatly impeded the diagnosis because the doctor only got a partial picture of what was going on. Another impediment to diagnosis was that I did not know what MG was. If I had heard about it and its symptoms, I might have asked enough questions for it to have been diagnosed earlier.

Finally one morning, I called my doctor’s office and said I was desperate. The nurse said to check into the hospital, which I did. The doctor did these standard checks like having me squeeze his fingers and push up with my legs against resistance. I could show reasonable strength for a short time period but my strength quickly waned, however, that did not come out in these short tests. In this hospital stay my doctor ordered the blood test that led to diagnosing MG.

After MG was diagnosed (June 2014), I immediately had a 10 day stay in the hospital to receive IVIG and prednisone.

I slowly got better. My high dosage of prednisone was slowly reduced down to 15 mg per day, and together with mestinon, I continually got stronger. My symptoms were reduced to where I could eventually walk a mile with only stopping to rest once, as long as I didn’t do it in the heat of the day! My head drooping was minimal and I no longer had blurred vision. My symptoms were then tolerable and as long as I didn’t push it too much my life was fairly close to normal. However, it didn’t last.

About 15 months after diagnosis and treatment my symptoms worsened. It steadily has gotten worse to where now I can only walk about a city block without stopping to rest. When I get tired my legs get really weak and my head droops. My vision get blurred if I read for an extended period.

I just started with Rituxan. I had two infusions (2 weeks apart) in May (2016) and am now waiting to have the next round 3 or 4 months later. It takes over a month to start feeling benefit from Rituxan — hoping for good results!

At least now, I know that something WAS wrong and I know what that something is.

-David Wiebe