Found on Facebook at Spoon Shortage Sue’s page, updated to include a few other illnesses.
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In 2008, my smile fell. I had a new baby, a four year old, an Air Force husband deployed to the Middle East, and a doctor that informed me that I had Bell’s Palsy due to stress. Vain as I was, I took a deep breath and moved on with my life, just, without smiling. I made fun of myself. I made stupid faces in pictures. I learned to not let it bother me…much, anyway.
When my husband returned home, the entire family packed up and moved from the mountains of North Carolina to Gulf Coast of Florida. I joined a gym, made friends, my oldest child started school, and I had a wonderful house in the middle of a wooded area on a beautiful bayou. Life was good, yet something was off. I was always tired. I chalked it up to aging, motherhood, and the heat. The fatigue worsened. I was struggling with mundane tasks like scrubbing the glass top stove and washing my hair. It was during a Zumba class one day that I realized that I didn’t have either the strength or the coordination to continue. Something was very, very wrong with me.
This begins the period of time that every autoimmune disease sufferer is familiar with: visits to doctors who half listen, tests for everything that they think might be wrong that come back negative, and finally the ultimate suggestion that this problem is in my own head. One doctor called it depression, another one suggested that I spend three hours a day on a treadmill. It was demeaning and frustrating.
We moved again after two years. The fatigue lightened up and I thought, okay this was some illness that passed that they never discovered. Then the eye problems started. I couldn’t see half the time. I would tell my husband that I’m not sure if I’m exhausted or if my eyes are just so tired that I feel exhausted. Of course, the eye exam said I had twenty/twenty vision and all other tests were negative. I began to doubt myself. This endless negative inner dialogue kept me awake at night. Nightly sleep loss compounded over weeks then months. I slipped into a funk that was difficult to drag myself out of.
We moved again, this time to Colorado. Best move ever. I had a period of time where, even though I was always tired, I felt normal. I lost weight. I hiked mountains. I even smiled my crooked smile. But it crept back on me. In August of 2014 I felt the fatigue, the eye strain, the inability to use my hands, every little thing hitting me again. Something new, my right eye was drooping. I went to see my doctor, who didn’t hesitate to refer me to a neurologist. I was in his office for fifteen minutes before I heard the words Myasthenia Gravis. Testing still had to be done but there it was, my tormentor.
I was relieved. I was actually happy about being sick. I was not crazy. I also thought, six months maybe a year of pills and I will be back to normal. For a while (despite my feelings toward the prednisone) I did very well on the medications. My smile returned. I felt better. I was so confident in my complete recovery that I told very few people that I was sick. Why share? I was going to be fine.
August 2015, I returned to my home state of South Carolina for a two week visit. It was very hot, very humid, and the entire trip was very stressful. By the time I returned to Colorado, I was ill. I feel like I’ve been in a deep hole since then. I started the IVIG, my steroids were upped, and I now have meds to manage my anxiety. Every day I battle myself. I want so many things for my life that I cannot have right now. I don’t know when to push forward or when to rest. I have crippling moments of self- doubt where I feel like, a burden on my family. I worry about people getting tired of me being sick because I’m already tired of myself being sick.
I DO NOT WANT TO BE SICK FOREVER.
Our next move is in four weeks after three years in Colorado. We’re headed to Omaha this time. I already have an appointment with a specialist at the University Of Nebraska. MG is his thing and I have placed great hope on this move. At my core, I’m a dreamer, a positive person. Sometimes, that inner truth is hard to hold onto but it’s still who I am. In the harshest moments, I tell myself that it’s going to be okay, just not today. Meanwhile, I’m educating myself. I’m learning about my illness. I’m becoming an advocate for myself. I’ve opened up to the people who care about me to let them know what is occurring in my life. I’m still learning when to ask for help, to communicate when I’m struggling, but everyone in my life has been amazingly supportive. I’m not alone. I am building strengths that I can tap into when I’m victorious over MG.
– Meredith Tournay
An excellent resource written by Rebekah Dorr at MG Unmasked, this packet contains pertinent information about myasthenia gravis and how it pertains to patient healthcare.
Click the link below to view the PDF. To save, right click the link below and click “Save Link As” or “Save Target As.”
The first time I heard the diagnosis Myasthenia Gravis it was from a local neurologist that did not believe in me or my symptoms or that I had Myasthenia Gravis!
About a month earlier I spent a week in my local hospital after loosing my ability to walk one day at work. I had been noticing other strange symptoms but never put them together. I was working full time as a teacher’s assistant to students with emotional and behavioral disorders. The job was intense, you had to think and move fast!! Students questioned me why my hands were always shaking, why was I not playing at P.E. anymore with them. Why was I walking so slow, why was my voice sounding funny? Children pick up things very quickly and as I was dismissing my notable symptoms, my students kept asking questions. I had previously had 3 back surgeries including a spinal fusion, so I contributed my leg weakness to ongoing issues with my back but it did not explain why my arms felt so fatigued or my voice getting hoarse. My symptoms progressed to the point where they could no longer be ignored, I needed answers!
I was admitted to my local hospital and had many tests that did not reveal any answers to explain the myriad of symptoms I was experiencing. I was seen by the neurologist on call at the hospital who told me he had no idea what was wrong with me and quite frankly he made it clear that if more tests continued to come back negative, that meant it was all in my head!
I remember the feeling of despair that a doctor refused to believe me, that he dismissed me!
I was discharged to a rehab facility where I received OT, PT and speech therapy. I couldn’t do anything for myself without help. I feared for my future. I did receive advice at the rehab center that looking back probably saved my life. I was told to find a research hospital and a specialist who may help me with a diagnosis. I did just that, however the wait time for a new patient was significant so I returned home with therapists visiting me helping me to use my walker and adjust to the normal daily living skills that we all depend on.
I had a follow up appointment with the neurologist that had seen me at the hospital. I told him I was waiting to see a specialist at USF in Tampa. He made a call to my new specialist from his office and still claimed he had no idea what was wrong with me, if anything at all!! A few days later he called me and said he spoke with the specialist I was waiting to see and she wanted me to start on Mestinon while I waited to see her as she suspected Myasthenia Gravis. He proceeded to tell me that he believed I did not have MG and did not approve of giving me the medication but complied at her request.
It was then that I started reading about Myasthenia Gravis and everything came full circle. There it was, in print, all my symptoms!! I took the medication and it helped but there was no dramatic change.
The day finally arrived, I got to meet the specialist Dr Lara Katzin from USF in Tampa, a neuromuscular specialist who only treats MG and ALS patients. As soon as she started her exam, she said she knew for certain I had Myasthenia Gravis and unfortunately had several patients like myself who had been dismissed by other doctors. I wanted to rejoice, not because I had a disease, but because I had an answer, an explanation that I was not crazy and a Dr that believed in me!!
It took a SFEMG to confirm my diagnosis as my blood work tested negative for the MG antibodies. I was immediately started on IVIG treatment in the hospital. I was very sick from side effects in the beginning. I eventually switched to plasmapheresis treatments, 5 days every 3 weeks. I was promptly scheduled for a thymectomy (removal of the thymus gland) as my Dr wanted an aggressive treatment plan to hopefully minimize some of the disabling symptoms with Myasthenia Gravis.
My particular MG is refractory, meaning I do not respond well to commonly used therapies. I was unable to continue working. I missed my job and my students, but I became focused on recovering from the dramatic affects of Myasthenia Gravis. It’s been over 3 years now, and MG still controls my life as my abilities are reliant upon my treatments and how much activity I can do.
I have spent many, many days in the hospital. I have tried lots of medications. I have held such high hopes of better control over my MG and even remission!!
Myasthenia Gravis has completely changed everything in my life.
I have to prepare differently now when we do things as a family, work around my treatment schedule and bringing the wheelchair, keeping me in the shade and a place to rest if I need it. I cannot just get up and go anymore, my independence is slowly slipping away and I fear how long my body can endure all these treatments as I tire very quickly these days. I’m grateful for a wonderful Doctor, a caring nurse for IVIG, a loving and supportive husband and 3 children who love me despite the disease and some missed events over the last 3 years.
I’ve always worked to help others, my joy comes from doing for others. MG awareness became my passion to give me the opportunity to help other people fighting this disease like listening to a parent who needs support as they witness their children struggle or sharing advice about treatments and what I have learned. If I can make a difference in someone’s life by sharing awareness then it’s all worth it. There are many times when I have felt very alone because no one has ever heard of MG, which is what inspired the hashtag #IhaveheardofMG
I do not know what the future holds, as my disease process seems to be getting worse.
I am still adjusting and learning to live in the moment and to be grateful for my family and the support of the MG community. MG is a very lonely disease because people have difficulty understanding something they know nothing about. I didn’t know about the disease either until it entered my life.
My hope is that patients in the future have faster diagnosis, a doctors trust and knowledge, better treatments and of course a cure! My hope is for public awareness so that an MG patient is not left feeling alone and isolated and that people can recognize and empathize with a person struggling with MG. I want everyone, everywhere to one day say I HAVE HEARD OF MG!
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!!
I have always had a droopy eye lid, even in my elementary school years, but back then it was called a lazy eye. As time went on, I realized at certain times I would have a really hard time breathing but when I went to my doctors, I was just told it was “nothing” because I always had a pulse ox of 99%.
I have always seemed to be clumsy and I can remember my parents often saying I could trip over the flowers on the carpet.
In my early forties, I had a stroke. I had just moved to Georgia and knew no one and definitely knew no doctors. I was assigned a neurologist who was an older gentleman and this is the only time I will refer to him as that. After I got out of the hospital, he placed me in a daytime rehab program for physical/speech/ occupational therapy. I had PT in the morning and OT almost immediately after lunch where I would be placed on the stationary bike and collapse every time. The neurologist labeled me as “lazy, menopausal and possibly crazy” and removed me from the program. I ended up spending almost two and a half years bedridden.
This was deeply humiliating to me as I had an aide come in the mornings that I was dependent on to make me coffee and take me to the bathroom. Sometimes she didn’t show till noon time which meant medications were late, I had no coffee and there was lots of pain from not getting to the bathroom. Then a night time aide would come and luckily she was wonderful to me.
Every time I would fall or have a really rough time breathing I would head off to the ER praying someone would know something but I was always met with dismissal. The neurologist refused to come and evaluate me and would insist I was seeking attention. The ER doctors grew tired of seeing me and were not very nice. I had decided to do a living will, checking off the block for a DNR (do not resuscitate).
A member of my church had the same neurologist I did. She had all the signs of MS but this “wonderful” doctor also wrote her off as being hysterical. Luckily for her, her husband was a pharmacist at the hospital where this neurologist practiced. He had to beg the doctor do a spinal tap on her. The doctor finally agreed and told her the test came back negative even as she worsened. However, she was able to get in with a neurologist who was well known and is difficult to get an appointment with because she was just that good. The next time I had to go the the ER, I went to Candler Hospital where this new neurologist was on board. I requested her care and God was with me in she walked. There she was, the lady who was about to set me up with an amazing team of doctors and actually diagnose me with a week! Amazing, isn’t it, the difference between a doctor who listens and one who seems to think females are hormonal and hysterical. I can never have enough thanks for Dr. Julia L Mikell who has retired now and it breaks my heart. But for ten years she listened as I was panic stricken and became so angry because I just wanted to be human again. She always listened, and was so compassionate and caring.
I went to her unable to take one step on my own and within months walking on my own. I went for so many hospital stays in a year I could have changed my address and now my last plasmapheresis was November 2014! I still have rough days but I can recoup. I have learned when I need to call the doctor and when I don’t. I don’t panic when I have a flare but I do get madder than hell during a flare. I hate losing control. Life with MG sucks.
– Cindy Milloy
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
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