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.

Today was my annual mammogram. I absolutely hate having this test done. I can handle pain, since I live with it on a constant basis. IV’s, no big deal anymore. Pain injections into my joints, hah! But since I’ve had my thymectomy, which is just like open heart surgery, well my chest was cracked and opened and I have a huge zipper scar, going through a mammogram has been torture.

I was told that because it takes a long time for the scar and the muscles to fully heal, the positioning and pulling of a mammogram can be very painful. The first one after the surgery was the worst. I was actually crying, not from my boobs being squashed, but from the chest wall muscles being pushed and pulled. Each year after it was just a little bit better.

Today was the first year it didn’t hurt. When I told the technician, she said that I’d probably have to go through it again. She figured she didn’t “compress” me enough. But after waiting a few minutes, I was told the films were fine. I was done for another year!

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 think I figured out why I’ve been having so many emotional issues recently, along with my unusual sleep patterns. I got a phone message on Friday from my primary doctor telling me that I had to call the office back because of my blood test results. By the time I got the message and called the office was closed.

Today I learned that my Potassium level is low again. It’s 3.3, which usually isn’t bad since 3.5 is the normal range. But, since I have chronic illnesses especially Myasthenia Gravis this can cause me problems.

It’s a long story about how it took so long to get my blood test results over to my Nephrologist (Kidney Dr.) but I didn’t hear anything by late afternoon. So I called that office. They didn’t call me back until after 5 PM. By then, as is usual for me, the MG symptoms were kicking in. But it was really bad today.

The nurse I spoke to told me to go to the ER because she could hear my slurred speech and shaky voice. I was so upset that I had my husband get on the phone and tell them that I know how to control my symptoms and that I was ready for my medication when they called. He went back and forth with them.

Finally they understood that I wasn’t going to the ER. It then took 3 more phone calls to tell me how to increase my medications and to go for more blood work on Monday. Sheesh! I do feel very fatigued, am having leg cramps and all over muscle cramps. The MG symptoms are also causing my muscles to twitch. But I know to rest, take my meds on time and if I feel that the symptoms are getting worse to go to the ER.

It’s funny, it’s either doctors don’t know about Myasthenia Gravis or they overreact.  Even though this ordeal was annoying, I had to laugh about it. I’m thinking positively that now that I know what’s wrong I’ll be feeling better soon.

What a day it’s been. I hardly had any sleep the past few nights and my body was telling me that it’s time to slow it down, but I had already made plans to volunteer at my daughter’s school to help with the Christmas shop. This is a place where the children can buy presents for their family. The items don’t cost very much and the teachers and volunteers help to make sure that they are not overspending or buying for themselves.

Today was the first day and it wasn’t very busy, but we still had a few classes come in mainly to look at what was available. It wasn’t very hard work but I came in tired and left extra tired. I also had my support group scheduled but no one had said they were coming. I left a message at the church that I was across the street in case someone showed up.

I had a few errands to run after the school time. I had no choice but to do them. I knew if I went home I’d just fall asleep so it was better to move around. I busied myself until it was time to pick up my daughter from school and then I just drove over there and sat in the car in line. I felt myself falling asleep a few times, but thank goodness she was in the car very quickly.

My body was aching when I got home so I did some stretches to work out the kinks. It felt good to just let my muscles stretch out. After getting snacks for me and my daughter and helping her with some homework, I ended up taking a short nap.

I spent some time watching tv and relaxing tonight. I knew I did a lot of walking today so sitting was a good idea. Now I’m just going to work a little while longer and get that good night’s rest that I need.