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. 

"Become"

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 sleepnet.com, 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. 

"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. 

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.

Debate

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? 

Still Waiting

My trip to the doctor today did not yield the desired results. My leg is not healing swiftly or properly, so I left with those darn stitches still in, a prescription for an antibiotic, and another appointment for 11 days hence. 

My preliminary biopsy results show that there is no inflammation of the muscle, so  the problem is not autoimmune. The samples have been sent out of state to be analyzed for the presence of mitochondrial disease. 

I will be the first to admit that patience is not always my strong suit. Especially when it comes to my health issues. But, patience I must have. 

 So, I wait. 

"Miss Louise"

Louise Hudson, "Miss Louise" to me, celebrated being 96 years young yesterday. If I live to be 96, I hope I look this good. 

Another really neat thing is that, at 96, Miss Louise still has friends to celebrate with her. So many people her age have no friends left. But Miss Louise has spent her life making friends of all ages, including 52 year old ME. 

I am not quite sure just why Miss Louise "adopted" me at Crawford Street United Methodist Church. But, I am certainly glad she did. She has faithfully called me, prayed for me, sent me cards, and just loved me. The older I get, the more I treasure the people still on this planet with me who really and truly love me. 

I have long been slated to sing at Miss Louise's funeral when the time comes. At this rate, she may very well outlive me! 

We may have to find a back-up, just in case. 

Not MG

After 10 years of being diagnosed with Myasthenia Gravis, I found out yesterday that this is not what I have. It is a bit of a strange feeling. I have been on MG message boards, mailing lists, and have been to gatherings with other people diagnosed with this particular neuromuscular disease. My symptoms fit into the "mold" of MG and I never really questioned my diagnosis.

One thing I have found out from my research and observation is that many neuromuscular diseases have very similar symptoms. Often, the difference is in the prognosis. The muscles of myasthenics do not degenerate. The problem is with the transmission from the nerves to the muscles. 

While I have tried very hard not to "become" my illness like many folks I know, dealing with what I thought was myasthenia gravis was part of my identity. Hopefully, by next Thursday, I will have an accurate diagnosis. I guess it will become a part (but by no means ALL) of my identity. And I will buy a new Medic-Alert bracelet and just keep living as well as I can for as long as I can. 

Finally!

After over a month long wait, I am finally scheduled for my muscle biopsy next Tuesday. This is not exactly going to be fun, but at least it should give me answers. I am past ready for some answers. 

I am trying to read up a bit on what to expect. Like most information gleaned from the internet, it varies from "soreness, no big deal" to "severe and prolonged pain." I am planning on the "no big deal" myself. 

I won't say that I am not scared. Despite my many surgeries, I am a little nervous about a procedure that I won't be asleep for. And I am apprehensive about what the doctor will find. Muscle degeneration is not ever a "good" thing. But finding out how quickly this is happening, is it likely to continue, etc., will be helpful as I figure out ways of managing what may be increasing limitations. 

Waiting

First of all, I must admit that having to wait, especially for medical tests, is not something I do well. I have a degree of patience with many things. This is not one of them.

Right now, I am waiting to be scheduled for a muscle biopsy. This biopsy will hopefully tell me whether or not I have indeed been misdiagnosed with MG all these years. It will also potentially tell me if what I do have is a form of mitochondrial disease. The big difference in the two is that mitochondrial disease is progressive. And my last EMG revealed serious deterioration of my muscles. 

Over the past year or so, I felt like I was getting weaker. I attributed it to the stress of caring for and then losing my Dad. My father-in-law was diagnosed with cancer before my Dad's estate was even settled. But, while stress can exacerbate any neuromuscular disease, this is far more than stress at work. 

I have adapted as best I can to the increased weakness and loss of stamina. But, I am a planner. I want to know just what I am dealing with. Bad or good.

So I wait. 

Andrew: 20 Years Later

While watching the news tonight, I learned that this was the 20th anniversary of Hurricane Andrew. Actually, Mississippi did not see the worst of the weather until August 26th.

I was at choir practice when I received a call from my husband saying a "tree limb" had fallen on the house and that I needed to come home. I was not prepared for the sight that greeted me. A large oak tree had been blown completely out of the ground and rammed through a corner of our house. 

The tree fell on the room I used for crafts and sewing and where my husband had his desk. Fortunately, neither of us was in the room at the time. My husband was sitting in the next room, where the ceiling cracked over his head. 

Needless to say, it was a mess. The sewing machine I received for Christmas when I was 13 was crushed. Bill's desk was history. And rebuilding was slow due to the fact that this house was built in 1955. Our neighbor, Ross Ables, had to scrounge for old materials and make things from scratch that could no longer be found commercially. A lovely gentleman, Stanley Mullins, hired by Ross helped me sift through the rubble and, to my delight, found a box of Christmas ornaments given to me by my mother (who had died a year and a half earlier) still intact. Nothing else in the room mattered to me as much as those ornaments did. 

Fortunately, we were able to live in the part of the house that was not damaged. Chaotic and difficult as it was during those long months, it could have been much, much worse. 

But, I admit, any indication of a potential hurricane still has me scrambling for supplies and looking anxiously at my trees. And, a bit selfishly, hoping it will pass me by this time. 

MG or not MG?

I had an appointment today with my new neuromuscular doctor. I was very nervous, since I had been with one doctor for the past 12 years.

As Dr. Veda put me through my "muscle strength" paces, he kept frowning.

And then I received a bit of a shock. While he was suprised at the level of weakness I exhibited and recognizes that something neuromuscular is going on, he is not sure it is myasthenia gravis. Or, it may be that I have MG and something else besides. Dr. Veda is not sure that the doctor who originally diagnosed me (the one before the 12 year doc) made the correct diagnosis.

From what I gather, this is not uncommon in the neuromuscular realm. My symptoms could be MG, but they could also fit a number of other neuromuscular diseases as well. All I know is what my body will and will not do.

So, for now, we start over. Nerve conduction test #7, more bloodwork, and maybe a new diagnosis. Maybe even new hope for some treatment that might help me function more normally.

Stay tuned.

Not Ready for Prime Time

OK, I admit it. Although I love my mainstream Olympic events, such as artistic gymnastics, diving, swimming, and track and field, I also love some of the sports that never make it to prime time coverage.

Lame, I know. But I am fascinated with the team event in synchronized swimming. I was 25 years old before Betty Jo Pfifer taught me to swim and I barely made it through the rinky dink swim test required to pass the class. Watching these people actually stay afloat while throwing each other up in the air and staying in sync fascinates me to no end.

I also love rhythmic qymnastics. These women not only manage to dance, leap, and tumble, but they do it with hoops, clubs, ribbons, and balls that must be completely under control while they are doing all this. And in the team event there are 5 of them all trying to keep these things in the air. As a person who has always had a tendency to trip over her own feet, I am fascinated by this level of coordination.

Track cycling is another sport that intrigues me. I don't see how these people play the cat and mouse games they do on those skinny wheels! I even get into the canoeing and trampoline.

And, of course, I can't wait till the 2014 Winter Olympics where, in addition to watching my favorite figure skating and snowboarding I can also watch...I can hear the groans already...

curling!

Denny P.

Today, it will be my privilege to celebrate the 80th birthday of my precious friend, Denny P. Allman. Or "Father Allman" as some know him.

I met Denny, and his charming wife, Norma, when I was Nimue in "Camelot" back in 1989, if I recall correctly. It was a behemoth of a play and the cast had plenty of time to bond between times when we were needed on stage. Heck, some people had time to get to Daquiri World and back between scenes where they were needed!

I was thin then.

Over the past 23 years, Denny has been one of the best friends I have ever had. He helped me pick up the pieces of my life when I lost my mother in 1990. Denny invited me to come and sing for his church and began the tradition of my singing the "Via Dolorosa" that continues to this day. He cuts mats for my art classes at Vicksburg Senior Center. And he is a world champion hugger!

As is the case with these 80th birthdays, I have a moment or two of tears for my Daddy who did not make this much anticipated milestone. But, again, celebrating with a beloved friend like Denny helps mitigate the sting a bit. 

So Happy Birthday to my beloved Denny P. May it be a day as special as you are!

Letter to Mr. Grant

In light of the passing of Larry Grant this morning, I thought I would post this letter I wrote to him on February 17, 2012. 

Dear Mr. Grant,

Please forgive the typed letter, but I would like for you to be able to read  the thing. This would not be possible if I wrote it myself!

I was so sorry to hear of your cancer diagnosis. Cancer sucks. There is no “nice” way to put it. It just does. 

Even after being out of high school for almost 35 years, I still remember being in your 8th grade band like it was yesterday. You scared my 4 foot 10 inch, 85 pound self, half to death the first time you got really mad. If I recall correctly, that was when you yelled at Jim Cooper and threw things because he used his trumpet as a Halloween noisemaker. Thank goodness I was a clarinet player. You tended to throw things towards the brass players more. ;)  

But, most of all, I remember that you really cared about us. I remember you fighting tears when you told us our classmate Beverly Bell had died. And I remember you taking up for me when I was accused of writing “Yo mama lives in a creek” on Sheila Dunn’s band folder. I would have been waaay too scared to do any such thing, and you knew it. When Sheila’s mom threatened to call my mom, you told her that “you knew Mrs. Nelson, and that you wouldn’t advise it!” I still get tickled every time I think about that. 

Anyway, know that you and “Miss Israel” (Now Mrs. Grant!) are firmly in my thoughts and prayers. 

Blooming

I must admit, I have always agreed with the saying "Bloom where you are planted." I used to get anoyed when people would move to my town from other states and larger cities (usually for employment reasons) and bemoan the fact that they were "stuck" here. 


I know it is not easy starting over in a new place. But I have seen many people bloom in their new places. They join a church or civic organization and do volunteer work. They create new opportunities for themselves. And, if ample opportunities cannot be found in town, they need only to branch out a little ways to find more things to do. Even if their roots can't leave the current situation or place, there is a good chance that their branches can. 


Over the past few years, I have found myself "rootbound" at times. I was not happy in some situations, but could not quite bring myself to take leaps of faith in order to find ways to blossom. I have no desire to leave the city I have called home for the past 44 years, but I needed some change. 


One change was to put past negative experiences behind me and pursue art, first as an experiment, and now as a serious hobby. I had to get out of my "rootbound" mentality and just go for it. Another place where I feel like I am blooming for the first time in several years is music. My "roots" are still with my church, but my branches are reaching out to churches who need music, both in my community and other nearby communities. I feel like a flower that has finally found the sun again.


I am once again beginning to bloom. 

Mary

Yesterday, Mary came over to "do art" with me using the mixed media techniques we used in the "Forest Floor" workshop I mentioned in a previous post.

As is sometimes the case, I can't remember just exactly when I met Mary. But somehow, she ended up in my Senior Center watercolor class almost 3 years ago. Since then, we have bonded like we have known each other for much longer than that.

We have been together through her cancer and fractured legs, to my health issues and the death of my father. We have celebrated the joys of her grandchildren's accomplishments and my own accomplishments as a developing artist. She even came to my "beginner" art class at the first of the year and helped me out. This entailed dealing with almost 20 people spread out to paint on every available surface. If that is not love, I don't know what is!

So, as she celebrates her birthday tomorrow, I celebrate the circumstances that brought her into my life. Happy Birthday, Mary Irene! And many more.

Cool!

When I read the weather forecast for next week, I nearly wept with joy. Temps in the high 80's with realistic chances for rain. Be still my beating heart!


This is quite a gift for July in Mississippi, and I am grateful.

Forest Floor

Last weekend, I took a class at our local Southern Cultural Heritage Center called "Painting the Forest Floor." We were e-mailed a list of materials to bring, but I really had no idea what to expect.

Throughout the week before, I dutifully had my dear husband out looking for interesting leaves, acorns, twigs, etc. My first thought was that we were going to glue these onto something. But, this was not the case at all. We used these things, pressed into modeling paste or something similar, to create texture on our support. Then, after it dried, we used paint to enhance the textures. I chose to use all organic materials in mine, even using twigs to paint the dark lines.

All I can say is "Thank you, Jean Blue!" These are materials I did not know how to use and some that I had never heard of! But they have opened up a whole new fountain of ideas and methods for me to use in my art. These are things I can do even when I can't see well, or when my hands are shaky and uncooperative. Acutally, that can lead to even nicer results.

I still love my watercolor. But I am looking forward to this new world of art that "Painting the Forest Floor" opened up for me.

Blue in the Face

I know most of us have used the expression "I talked until I was blue in the face." I really try not to do this often and only in cases where it is really important.

I have been in a situation for years now where I have tried to get someone to understand a situation. Off and on for about 10 years to be exact. Finally, I  have come to the conclusion that:
a. The person hears and simply does not care.
b. The person honestly can't grasp the situation.
c. The person thinks that if he/she does not acknowledge the situation, it will cease to exist.
d. The person has an extraordinary ability to ignore physical evidence.

Blue is not my color.

And I am tired.