Monday, October 29, 2012

Civics 101

According to most current polls, approximately half of us are going to be disappointed on Election Day. 

So, how are we going to respond if the election does not go "our" way? Are we going to spend the next four years mired in "gloom and doom" thinking? Do we just "give up?"
I sincerely hope not. 

By design, our government is about more than one man (or woman). We have checks and balances in the form of congress and the US Supreme Court. 

So, if you are conservative, say extra prayers for Justices Roberts, Scalia, Thomas, and Alito. If you are liberal, you might want to reserve those extra prayers for Justices Sotomeyer, Ginsburg, Kagan, and Breyer. Since Justice Kennedy is often the "swing vote", maybe we all need to say special prayers for him!

As for Congress, the US House of Representatives currently has a Republican majority. The US Senate has a Democratic majority. Because one third of the Senate changes every two years and the House members are elected for two year terms, things can change fairly frequently. You can work on the local level to help elect members of your chosen party. Get involved!

If you want the possibility of more choices for President in the future, consider voting Libertarian. If your state is already a lock for your party, but you are not ecstatic about your candidate, consider helping this party get recognition and funding for 2016. 

Work for your party! Think positively. Vote! 

And, seriously, pray for them ALL. 

Wednesday, October 17, 2012


Back when I was first diagnosed with neuromuscular disease, asthma, and obstructive sleep apnea, I joined a number of online message boards in hopes that I would learn more about my illnesses and how to deal with them. 

I soon left the asthma board. There was not much activity and I was getting the education I needed from the staff at my doctor's office. Once I had a daily medication and a nebulizer, I had no real problems managing my asthma at home. 

I spent a couple of years on, a message board for sleep disorders. That experience was priceless. I was finally able to get my C-Pap and mask setup right and having my apnea controlled was a major life changer. For the most part, the people on this board were positive, upbeat, and were determined to manage their condition as best they could and just keep on living.

The myasthenia gravis boards were a whole different story. They were very active and I did learn a lot. There were a number of people who were able to manage their illnesses, accept the things they could not change, and still have quality lives. Unfortunately, there were quite a few who "became" their illness. Their whole identities centered on being sick. They had no other interests or hobbies other than making trouble on the boards for other members, using their disability to manipulate friends and family, and bemoaning their fate. Don't get me wrong, neuromuscular diseases are not easy to manage. But, centering their lives completely on illness did not make them feel any better in the long term. Not mentally, physically, spiritually, or emotionally. 

Don't get me wrong. I have the periodic "pity party." Add reflux, chronic neck and back pain, arthritis, menopause, life threatening allergies, and post herpetic neuralgia to the above list and there are times when it is hard to stay "up." And I can certainly understand that it can be hard not to get so caught up in the routine of doctors, surgeries, and medications that everything else can get lost in the shuffle. At one time, I had 11 doctors. I am now down to "only" 7. 

I am a singer. I am an artist. I am a writer. I am a friend, a sister, and a wife. 

I refuse to "become" my illnesses. 

Thursday, October 11, 2012

"No Daddy" Birthday

Tomorrow will be the first birthday I have ever celebrated without my Daddy. I am still trying to totally wrap my head around the fact that he won't be calling me to sing his off key rendition of "Happy Birf Birf" to me. There are times when I can almost pretend he is still over at his house just 5 minutes away. But, this is not one of those times. This is one of those times when the "Daddy shaped" hole in my heart is aching. 

Maybe, if I listen very closely, I can "hear" the echoes of happy birthday songs past. More than a little off key of course. 

Monday, October 08, 2012

What it's Not...

Well, the good news is that I finally got my stitches out today.  And, while I still do not have an official diagnosis, I know what I don't have. I do not have muscular dystrophy. I do not have myasthenia, lupus, multiple sclerosis or anything autoimmune. But, my muscle fibers show signs of atrophy and we need to know why. 

Dr. Veda continues to do testing on my samples for mitochondrial diseases. He seems to think that is the problem. We just have to find out which kind I have. Samples will be sent off, and results can take months to come in.  I just have to be patient. I do have patience...somewhere!

Meanwhile, I just keep doing the best I can with what I have to work with. Some muscles are weaker than others. I still fatigue with ridiculous ease. But, I am thankful for what I do have. A visit to the neurology unit at University Medical Center makes it abundantly clear that things could be MUCH worse.

Wednesday, October 03, 2012


I just got through watching the first presidential debate. Quite frankly, I was not impressed with the performance of either candidate. I kept thinking, we have over 315 MILLION people in this great country. These two are the BEST we can do? 

And my Facebook feed was pretty discouraging during and after. Everything seemed to boil down to money. Don't get me wrong, money is very important. It is hard to focus on anything else when money is critically short. I don't mean having to cut out the daily Starbuck's coffee, not having the new iPhone, etc. I am talking about not being able to walk into a doctor's office and get care (BTDT) or passing out from not eating for three days (BTDT, too). These were both quite a while back, but I remember. 

Are these debates even really helpful? Do they really make anyone change his or her mind? Or just they just add fuel to the fire of divisiveness? 

Mystery Meat

I have recently become reacquainted with a substance I have not voluntarily encountered since my school years.  Mystery Meat  I brought ...