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June is myasthenia gravis (MG) Awareness Month . MG is a neuromuscular autoimmune disease many people do not know. People with MG are known as “snowflakes” because our symptoms vary greatly. Then I would like to share my companion snowflake, Rebecca Dorr of story :. How Rebecca was diagnosed, symptoms, and their survival strategies
Jessica Gimeno (I): How old are you
RD :.? 26 years old
JG 😕 When he diagnosed
RD: I was diagnosed in September 2011-a few weeks of my shy 22 nd birthday
JG: What symptoms he experiencing
RD: I was on the beach at the beginning of August, notoriously one of the hottest months in Florida for a week at a family reunion. In recent days I remember complaining that I did not feel right. Something was off, but I could not help my finger on it. I felt like I was coming down with the flu and yet, other than a general malaise and fatigue, nothing was remarkable. On my last day on the beach, after playing non-stop hard in the sun and swim against the waves for days, I was starting to have some problems with my legs. I started dropping things and I felt awkward. Ten days passed with little or no improvement, despite rest and fluids. I went to the emergency room and was summarily dismissed with Tylenol and a pat on the head. During the day fourteen, I still was not getting better. I started having periods when he was out of breath and my fatigue increased. I underwent treatment for spinal meningitis through a lumbar puncture showed little. The resident on duty wanted to keep me because of my weakness in the arms and legs however, attended insisted he was looking for drugs and sent me on my way. I went out like a duck. It quickly escalated from there to a third and then fourth visit to the emergency room within a couple of days repeat a second lumbar puncture which left me paralyzed me for six weeks in my legs. I was sent back home after a stay of eight days with no diagnosis. visiting nurses encouraged me to find another hospital. In the new ER I was diagnosed in a few hours.
lose sight, along with my speech. All I knew to do was pray and leave open mouth hanging to stop the need to swallow and hopefully reduce suffocation. My mother took me in his arms, desperately calling Jesus to save me.
JG: What is the worst episode that has
RD: Oh God. This certainly is not enough and it is very difficult for me to talk. I entered a cholinergic crisis after receiving Mestinon through IV since he was unable to keep down fluids or medications during a hospital stay in particular. Within seconds after receiving the medication, my whole body was paralyzed. I screamed, but I could not move. Immediately I began to choke and gasp for air, I could not swallow, my body dripping with sweat but I was shaking. I lost my sight, along with my speech. All I knew to do was pray and leave open mouth hanging to stop the need to swallow and hopefully reduce suffocation. My mother took me in his arms, desperately calling Jesus to save me. They took me to the ICU where she was monitored for a period of twenty four hours a day. I will never forget that meeting. He pursued me to this day and lingers in my mind, always on the edge of my consciousness, it reminded me how far you can take MG.
JG: How is life now
RD: My MG is considered stable thymectomy (surgery that is removed thymus, thymus is near the heart) now publish I’m still in prednisone , but I am slowly weaning. Fight against fatigue, loss of short term memory and a long list of other symptoms. I am also fighting against several other diseases. Some days I am able to conquer the world (or at least my small little world) and other days I am lucky to shower and change of fresh pajamas.
JG: What are some coping tools using
RD: In the days I feel so sick and overwhelmed is all I can do just was in my bed, they spend a lot of time with my good friends, Hulu and Netflix. Sometimes it is a simple prayer, asking God. Faith, family, friends, music, books, my support page and all local awareness projects I’m connected with, they all support me and grounded. It is so important to find a new purpose for MG and all chronic disease really. I think it would have been swallowed by despair long without these things.
JG: What is your dream
RD: I want to change the world, cultural stigma against chronic diseases, both clinical and community. Much of our battle is not only fighting against our own bodies, but how people fight against us-what we perceive and how we should or should not work. It becomes an obstacle for people living with a long-term illness, an inhibitor that prevents them from forming new identities and healthy with the support of family, friends and doctors.
JG: How aware MG created
RD: MG consciousness is always happening. It is not only in big campaigns posters and photographs and walks, (although these are amazing and powerful tools to use!), but in the everyday moments. Talking to new patients, educate patients and caregivers about their illness, how to fight it, how to advocate and why this knowledge is important. For me, consciousness occurs when finally clicks on a patient and their disease is no longer ambiguous creature that controls them. A creature that has a name and the ability to be mitigated. Consciousness is more than create a buzz, which is representing a relentless disease in its proper light, showing how altered and theft and yet brings beauty and hope amid the ashes. On my site, I look to combine a wide variety of photographic tools and hashtags (credit to Sandra Hardin) for fundraising campaigns custom shirt.
JG: What would you like people who do not have MG must know about this disease
MG changes everything. However, many of these changes alter life remain invisible to the naked eye. You can not see what is happening in my neuromuscular junction but oh I can feel it! The fact that I smile and I put some makeup today does not mean I’m cured or everything better or else I’m being dramatic when I say I’m sick and yet, to all outward appearances, I look like this. There is so much embarrassment that comes with chronic diseases. The use of a wheelchair in her 20’s when “ok” look is of a lot of painful social gatherings. When I’m too sick to get out of bed, confident that I am not seeking attention or trying to get out of work. I’ll be happy one minute and fight my disease next, as they invariably changes as a roller coaster. MG is not so easy to live as they say. Almost all eyes are clicked online accredited to national foundations will tell you that is easily treated MG hospitals. Digress: MG has treatments and for that we are eternally grateful. But while many live a fairly normal life, is not the case for most. These treatments come with a price tag and a lot of “sticker shock.” Be patient with me. Love me as I am, where I am, no matter what.
I want you to know that no matter where they are, who they are or what they are facing at the moment, they are loved, have purpose and they are not alone. We can not overestimate the great power in these truths.
JG: What message does for people living with MG or any chronic disease
RD: I want you to know that no matter where they are, who they are or what they are facing at the moment, they are loved, have purpose and they are not alone. We can not overestimate the great power in these truths. I spent the first eighteen months fully aware of the nuances of the MG and what they would face. I wish I had someone who had walked that way with me. I do not want anyone to go through that. I want you to know that I’ll be there. I’ll be there in the middle of the night when they are afraid, if they are confused or have questions or just need to vent or laugh or have a hug. I have no power to cure MG, or have the power to make all the butter. But I have the ability to associate with each myasthenic I find this crazy ride and walk with them. Who is reading this:. You are not alone
river I of my favorite comedies and enjoy the simple joy of a new lipstick. Find new ways to find beauty in myself and in others and reminds me that I have a purpose, and that alone is very nice.
JG: Have you changed your appearance MG?
RD: The inability to exercise and often a combination of four years of steroids has changed everything. My skin, my hair, my weight (big), my confidence. If I’m in a wheelchair, my appearance and social acceptance changes. When people see me, I just assume I’m overweight or frowning or looking grumpy / tired for no reason. How could they know? Heels because I no longer use my legs tired. I spent many years hidden in the clothes instead of holding them.
JG: How do you feel this
RD: I feel I am a shadow of my former self in many ways. I used to not spend a day without makeup. He was always away from home with carefully chosen clothes and beautiful jewelry, hair and nails so. Now I am happy if I showered, dried hair and slapped on some earrings and mascara. Some days are easier than others, but it is a constant learning process.
JG: How to deal with changes
RD: silly as it sounds, before bed, I spritz on a splash of light body with a favorite fragrance. If all I did that day was getting up and brushing teeth, it helps me feel feminine and human. I find costumes that are easy for me and yet flattering look. I delight in the simple joy of a new lipstick. Find new ways to find beauty in myself and in others and reminds me that I have a purpose, and that alone is very nice.