June is Myasthenia Gravis Awareness month and for 2011, the main focus is “Uniting for a Cure… Together we are Stronger.” The Myasthenia Gravis Foundation of America is asking us to help share information about this disease and to help find better treatment and ultimately a cure.
As someone who has had Myasthenia Gravis for 8 years, I’m always willing to do what I can to help this organization. Plus, since I know that even medical personnel often do not know what MG is, awareness is very important. In fact it can save lives. When someone with MG goes into a crisis, they may not be able to speak or let anyone know what is happening with them. Everyone from first responders to surgeons needs to recognize the symptoms of Myasthenia Gravis, how to treat someone in crisis and what medications can help or harm.
I’ve written about what my life is like with Myasthenia Gravis. It gives you a picture of some symptoms people may experience. I hope that you’ll take the time to read it.
Myasthenia gravis means “grave muscle weakness.” MG affects voluntary muscles such as those in the arms, legs, eyelids, mouth and those muscles used for breathing; the disease is characterized by general fatigue. Currently, there is no cure for MG, but there are effective treatments.
My first symptom of having MG was a droopy eyelid, which quickly moved to weakness in other parts of my body. I have had a thymectomy within the first 6 months of being diagnosed. I take Mestinon and Cellcept and am seen by a neurologist who specializes in MG through the MDA. I have good days and bad days and have learned my limits. Some days I need to use a scooter to get around, some days I can walk around a shopping mall. The heat of Florida does a number on me, so I stay indoors often, or go out in the evening.
MGFA’s mission is to find a cure for myasthenia gravis and closely related diseases, to improve treatment options and provide information and support to people with myasthenia gravis through research, education, community programs and advocacy.
Please support Myasthenia Gravis Awareness Month by sharing this post, by volunteering, by making a donation, and by being an advocate.
I’ve learned the hard way that weight loss isn’t easy especially when you’re limited in your ability to exercise due to chronic illnesses. Although I’ve cut down on my calorie intake and walked, not being able to exercise on a constant basis makes it even more difficult to lose those extra pounds and inches.
A weight loss plan includes burning more calories than you consume and and some type of physical activity in your daily routine. A good friend of mine who has Fibromyalgia, has been successful in losing weight. First, she saw her doctor to talk about her goals and got a check up. Next she included her rheumatologist in her effort. He was able to provide information on the kind of exercise that would be beneficial to her, especially physical activity that wouldn’t cause more pain.
Image by o5com via Flickr
Her exercise routine began with yoga and stretching. She learned to listen to her body. If she felt pain, she slowed down, massaged the area or stopped if need be. Next came walking. Being outdoors helped her to feel more positive. She saw people and said hello to them. Soon they became walking buddies.
Shortly after her walking increased, she joined a gym that her rheumatologist recommended. The trainers were familiar with Fibromayalgia and exercises that helped lessen pain and help with weight loss. Soon, she was doing more cardiovascular exercises. She alternated days with water aerobics.
She chose to follow common sense with her diet. She read about calories, fat, sodium and decided to eat more fruits and vegetables along with more fish and poultry. She included protein supplements to improve her metabolism and help regulate her appetite. As she changed her diet, she found it more appealing, finding different fruits she had never eaten before. Instead of potato chips, she ate carrot sticks with a small amount of low fat salad dressing. It seemed as if her taste buds were changing!
Within one month, my friend lost 10 pounds. She does not look at this as a diet or exercise program, but as a lifestyle change. She’s an inspiration to many!
This is a sponsored post. All opinions are my own.
What better day than Valentine’s Day to think about American Heart Month? To show true love, get on board for learning more about cardiovascular disease and prevention. Heart disease is the leading cause of death in the United States. Since 1963 the president has proclaimed February as American Heart Month.
I hear that I should let go of stress. Easy to say, but so difficult to do, especially when you have multiple chronic illnesses. I’m constantly at doctors’ offices, having blood work done, taking prescriptions and feeling so darn tired. All this adds to my stress level which can make me sicker.
I’ve been trying a few things to help me relax and take my mind off the negatives. One thing is listening to music. I listen to songs that bring back good memories. I sit down on a soft pillow on my Jute rug and put on songs from the 80′s and let my mind go back in time. What a wonderful way to forget about the problems I’m facing today.
Another thing I’ve been working on is meditation. This is much harder for me because I can’t stop my mind from wandering. But, I’ve learned to go with the flow. Instead of trying to force myself to do breathing techniques or to focus on a phrase, I get in a relaxed position on a Seagrass rug and let my mind go blank. No worries if I begin to think of something as long as it’s positive.
You don’t need to be a babe in the literal sense to join the Chronic Babe Forum. I’m a member if that’s any proof! If you have a chronic illness or are waiting for a diagnosis, this forum is for you.
Jenni Prokopy, the founder and editrix of ChronicBabe.com also runs the Chronic Babe Forum. Get to know Jenni on Twitter as @ChronicBabe and see why she’s so awesome at being an advocate for those of us with health issues. And that’s what her forum is all about too – advocacy with a lot of humor.
You’ll find over 850 members at the Chronic Babe Forum and lots of groups. There’s groups for individual illnesses, hobbies, being social online and off and more. Yes, there’s a group for bloggers! You can find information about blog carnivals, blogs to follow and subjects to write about. Feel free to ask a question and a member is willing to help out.
There’s a chat function that only members can take part in. So if you’re having a bad day and need to get in a better frame of mind, or just want to say hi, go ahead and talk online. I always feel welcome at the Chronic Babe Forum because the members understand what I’m going through. You won’t get advice unless you ask for it. You’ll be treated like a person not your disease. I’m often uplifted from a quick visit.
I think of the Chronic Babe Forum as an online support group with the intent of giving those of us with chronic illnesses the tools we need to make our lives better. Hanging out with positive people is the key!
The MDA has announced a new ambassador who has Myastenia Gravis. Anastasia Corp is 8 years old was diagnosed with MG at the age of 2.
Anastasia is Pennsylvannia’s new Goodwill Ambassador for the MDA. She’ll help with fundraising, educational and special events for 2011. She’s described as “well-spoken, lively and affectionate.”
State Goodwill Ambassadors travel throughout the state and help share information about the MDA. Please visit the Muscular Dystrophy Association to learn more about Myasthenia Gravis and other diseases covered by the MDA.
