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.

The Myasthenia Gravis Foundation of America describes MG as:

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 was fortunate to get the Swine Flu shot last weekend since I have fit in the category of having a chronic illness. My husband and daughter had their shots too. My husband got his because of me and my daughter because of her age. I’m relieved to have this done as getting H1N1 is not on the top of my list along with having  Myasthenia Gravis and other autoimmune diseases.

I’m also on immunosuppressant drugs so I had no fear getting the injection. I’ve heard all the hype against it, but being put on a ventilator to breathe and my doctor being unsure if I can even handle Tamiflu, the drug to take for the Swine Flu, puts it all in perspective for me.

There were no side effects at all, just a slight discomfort where I got the shot. That only lasted a few hours. I was told not to take any medication like Tylenol as it might prevent the vaccine from working. My 1o year old daughter’s arm hurt her for more than a day, but she is getting allergy shots twice a week and her arm is sore from that.

Remember you cannot use the mist if you have a chronic illness or are taking immunosuppressant medications, so get your Swine Flu shot as soon as possible to avoid any serious health problems.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Myasthenia Gravis, Sjogren’s Syndrome, Fibromyalgia, Rheumatoid Arthritis and Ulcerative Colitis.
2. I was diagnosed with it in the year: with UC in 1985, with MG in 2000, the rest 2001 or the year later.
3. But I had symptoms since: 19844 for the UC
4. The biggest adjustment I’ve had to make is: not being able to work and giving up my active lifestlye
5. Most people assume: I’m not sick
6. The hardest part about mornings are: waking up because I’m so tired
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: my laptop
9. The hardest part about nights are: pain and insomnia
10. Each day I take __ pills & vitamins. (No comments, please) 36
11. Regarding alternative treatments I: am not able to try them because of the medications I am on for Myasthenia Gravis. There are many interactions for a certain prescription I take.
12. If I had to choose between an invisible illness or visible I would choose: visible so more people would understand
13. Regarding working and career: I’m sad that I can’t continue working in the career I chose for myself. I’m happy that I can work as a blogger though.
14. People would be surprised to know: that I’m in pain almost all the time.
15. The hardest thing to accept about my new reality has been: that I have to rely on other people for simple things.
16. Something I never thought I could do with my illness that I did was: attend a conference.
17. The commercials about my illness: re: Fibromyalgia and RA – make it seem like a pill or shot cures the disease.
18. Something I really miss doing since I was diagnosed is: dancing, drinking  a few beers, running, walking as much as I want to
19. It was really hard to have to give up: working
20. A new hobby I have taken up since my diagnosis is: blogging and photography
21. If I could have one day of feeling normal again I would: spend it with my family, listening to loud music, dancing, cooking and eating all day long
22. My illness has taught me: to appreciate every moment
23. Want to know a secret? One thing people say that gets under my skin is: you look great!
24. But I love it when people: recognize that most of the things I do take me a lot of effort
25. My favorite motto, scripture, quote that gets me through tough times is: I can do all things through Christ who strengthens me. Philipians 4:13
26. When someone is diagnosed I’d like to tell them: find a doctor who is supportive and knowledgeable and a support system
27. Something that has surprised me about living with an illness is: how understanding my husband and family are
28. The nicest thing someone did for me when I wasn’t feeling well was: take my daughter, who was much younger for play dates so she didn’t have to sit home while I slept
29. I’m involved with Invisible Illness Week because: it’s so important for people to understand about us, what our lives are like, what we go through each day and how they can support us
30. The fact that you read this list makes me feel: fantastic!

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

Remember the Bionic Woman and the Six Million Dollar Man? I often think about being able to replace my non-working body parts as easily as they did. And it sure would be great to be able to replace them with better performance parts.

I’d get new joints for most of my body, new muscles for the ones that hurt from Fibromyalgia, and new tear ducts and salivary glands that actually work. I’d even see if I could get a re-made neuromuscular junction so that I’d no longer have Myasthenia Gravis.

I’m sure there would be a lot of upkeep with these new parts, but it wouldn’t hurt to fix them. Plus there’d be spare ones if there was a big problem. Ah, the joys of imagination.

I’m trying not to make this a rant so I’ll just write about my symptoms without much commentary. Boring, but better than reading me whine about it at the same time, trust me.

About December 27th I had a menstrual period after not having one for about 6 months. It caused the Myasthenia Gravis symptoms to go haywire and it lasted 7 days.

Then about January 6th, this all started again. Add to that, nausea, dizziness, weakness, extreme fatigue, cramps, headaches and worsening MG symptoms. So I made a visit to my Primary Doctor as this was continuing.

I got the news that I am most likely starting Menopause. When I asked if the chronic illnesses would be made worse by Menopause I was told no. I do remember that fluctuating hormones can worsen MG. And I remember having to stop using the birth control pill when I was first diagnosed.

So I am making an appointment with my Neurologist to get things under control and to get my questions answered.

When I was first diagnosed with Myasthenia Gravis I distinctly remember being so frightened. I couldn’t tell you of exactly what my fear was based, but it was an overwhelming fear. It was as if someone had pulled a seat out from under me and I was falling into a deep, deep hole.

The fear turned into panic as my mind wrapped around all of the information that came with the knowledge of learning about the symptoms, the outlook and the treatment. When my neurologist recommended a Thymectomy as the main treatment to prevent the MG from worsening and to attempt to lessen the symptoms and the progression of symptoms, I felt trapped like a brown recluse spider trap.

I knew logically this was the best approach to take but at the same time I didn’t want to go through a major procedure that is like open heart surgery. I wanted to run away. I wanted to wake up and learn this was all a bad dream.

Making this decision wasn’t really that difficult as I first thought it would be. At that time my daughters were 16 and 5. I knew I wanted to be as healthy as possible for them as well as for me. So I chose the surgery. It was tough, but it was worth it.

When first being diagnosed with a life altering disease, don’t feel shocked that you are frightened and feeling trapped. Talk to your doctor, get help from family and friends and seek the help of a counselor if necessary, especially if you have difficult decisions to make.