Congenital Myopathy

After many months of waiting, I finally received a diagnosis (hopefully the right one this time!) today. The verdict? Congenital Myopathy. Apparently, I have had some of this since birth, or maybe even before. There are several variations of this, but most insurances will not cover more specific tests unless one plans to have children. 

I can remember being the smallest, weakest, and most uncoordinated child on the playground. But, I was able to march in the band when I got older. I did some swimming and aerobics when I was in my 20s and 30s, but I was never able to keep up with others in the class. By my 40s I had multiple other problems (ruptured discs, asthma, sleep apnea, severe anemia)  that cropped up and apparently exacerbated the problems I already had. 

This is one of those bad news/good news things. The bad news is that there is no cure for this. Muscle abnormality is muscle abnormality. The good news is that it is relatively non-progressive. There is something called Coenzyme Q10 that may help a bit and I have been given permission to do some gentle stretching. Stimulants may help the severe fatigue if my heart checks out OK. I am continuing my more mindful eating and less of me to move around would certainly help. 

For the most part, my fears have been relieved. I am not on a path to become completely helpless or a burden to my loved ones. I just keep on keeping on, doing the best I can with what I have to work with. 

And I don't think that is too shabby. 

Tired

Like so many who have had the "crud" this Winter, I am sure I am not the only one who is just tired. Tired of coughing. Tired of losing sleep. Tired of taking seemingly endless medications. Tired of being tired!

The mind and body are sometimes incompatibly intertwined. The body becomes tired and the mind seems to automatically follow suit. 

One of the things I think I am most tired of is people saying "Well, you have been sick for 10 days! Aren't you about OVER it?" As if that is going to somehow make me buck up and get well?

I wish!

Fatigue seems to color my mood more than my pain does. I can and do muscle through a certain amount of pain every day. But after a while, "tired" gets me. It saps my creativity. Dulls my brain. Plays havoc with my attention span. 

I am sure that this is mostly just lack of sleep talking and it will improve when I really AM over the "crud." 

But, for now, I am...

Tired. 

Drama

I received a late evening (9 PM for us) call last night. That does not sound late to most people these days, but, for my "old school" husband, it is. Has anyone else ever noticed that calls after 9 PM and before 8 AM are rarely good news? At least for my generation. 

This call was no exception. It was an alert to be aware of impending DRAMA. Totally uncalled for, unnecessary, and exhausting drama. Drama that I refused to get into last night. I may need to help address this issue, but I will do it at a normal hour. Better yet, I will get my ever efficient and logical sister to address it. 

I am already dreading an event that may well turn into a "dramafest." I will do what I need to do. My parents reared me properly. There are duties and occasions which I will not shirk, despite personal misgivings. 

I truly feel sorry for people who see drama is a way of life. A way to stay in the spotlight. A way to feel important when other aspects of their lives are less than satisfying. 

One of my favorite sayings is "Save the drama for your mama."  

I don't want it. 

Never Say Diet

I am almost at the end of month one of the unofficial, no particular program, just trying to count calories and eat more mindfully thing. 

My only real tools are a food scale and a nutrition app on my iPhone. I am not weighing or obsessing. Been there. Done that. I don't know how much weight I have lost. I do know that my face looks a bit thinner, my clothes are getting slightly looser, and my knees are not hurting as much. 

I am not doing anything drastic. I portion out my snacks in single servings, put them in baggies, and keep them in a basket on my counter. I have the calorie counts of each baggie programmed into my app. I have unsalted almonds, pretzels, gumdrops, and even chocolate chips ready when the need for a snack arises. I eat out, but I am eating child size portions in restaurants that offer them. Cracker Barrel has a child plate serving of grilled chicken tenders that is just the right amount. The child's menu at McAlister's offers smaller, but still tasty items. Even Fox's has a "bambino" pizza that is very reasonable, calorie wise, if not loaded with high fat toppings. That said, I will be going to Billy's tomorrow to have the chicken parmesan. It will be most of my calories for the day, but he has been closed for weeks. I need my fix. 

I don't have a goal weight. I figure anything I can get and keep off will help. 

Stay tuned. 

The Dads

It is hard to believe that it was only a month ago that we laid my father-in-law to rest. Even harder to believe that my Daddy has been gone for over a year now. 

Daddy and Mr. Sanders had the same March 28th birthday. Often this was celebrated on the nearest Saturday with a cookout at Daddy's Thompson Lake place. It was usually a bit chilly. but that never really mattered. 

I used to joke that, between them, they had the "Old Man" look covered. Khakis, Members Only jackets, slip on deck shoes or sneakers that closed with velcro, plaid shirts, and Daddy with his fishing hat. The uniform of at least 80% of men their age here in the South. 

Since I have been trying to eat less, I am beginning to realize how much I depended on food (especially late night snacking) to ease the pain of losing my two Dads. I did not really have time to mourn the loss of my Dad when Mr. Sanders became ill. Now, I seem to be experiencing the grief of both losses at once. 

I refuse to continue assuaging my sadness with food. I am just going to have to feel it. I don't like feeling it. Nobody does. 

I used to tell my patients that there were no real shortcuts through grief. Sooner or later, grief is going to surface. It may be days or it may be years later. But it will have to be faced, felt, and dealt with. 

And that time is now. 

Blessings

Yes, I am counting them tonight.

Due to some difficulties with my van, my husband was reluctant for me to go to Hermanville this morning. So, I stayed close to home and spent the day visiting with friends in three different hospital and nursing facilities.

The first visit was to "Miss Mary", who "kept house" for my Daddy until her health no longer permitted it. She is having her left leg amputated in the morning. Her right one is already gone. Instead of bemoaning her fate, she asked about my entire family and expressed condolences on the loss of my father-in-law.

My second visit was to Promise rehab facility to see my friend Sharon. Over the past few days, it has been my privilege to witness a miracle. Sharon had a stroke the day after Christmas, was unresponsive for days, and when she woke, was unable to speak. Today, she is talking, walking (with a walker for now) and rapidly getting back to normal.

The third visit was to a local nursing home to see "Big Bad John" as I call him. BBJ has been in intensive care, a rehab hospital, and now a nursing home since September 7th, after suffering acute respiratory distress and atrial fibrillation. He very nearly did not make it. I rejoiced as I watched a video his wife took of him walking (with a walker) down the hall to the nurses station, to the cheers of staff and residents alike.

My legs don't always work well, but I still have both of them. I sometimes have to use a walker, but I have never had a stroke. And I can't imagine being hospitalized in some fashion for 4 solid months.

After I finished visiting, I called 5 year old Mylie and took her out for a frozen yogurt. I felt like celebrating my friends and their triumphs.

And counting my blessings once again.

Photo a Day

A few months ago, I read about a "photo a day" challenge, sponsored by an Australian woman on her blog "Fatmumslim." Every month, she puts a list on her blog of an object or concept for each day. For example, this photo was inspired by the prompt "House." It does not have to be MY house. It can be any house. Creativity is encouraged!



These photos can be shared on her blog, her Facebook page, Instagram, etc. All my photos are taken with my iPhone camera and posted on Instagram. I share them on Facebook and Twitter from there. 

I have been a bit surprised at how much fun I have had doing this. Even on the busiest and most stressful of days, this challenge gives me something else to focus on during my day. The link to the blog with the guidelines is below. 

http://fatmumslim.com.au/photo-a-day-january-2013-inject-a-little-fun-into-your-everyday/

The "D" Word.

To quote "Garfield", Diet is DIE with a "T."  

I have got to figure out a way to lose at least some weight. I know most people have this as a New Year's resolution. However, I have some obstacles that make it extra difficult. I am going to have to figure something out. 

Obstacles:

1. My neuromuscular disease makes me exercise intolerant. My muscles are atrophying. They do not build up or gain strength. The more I try to use them, the weaker they get. 

2. Extensive food allergies:
Shellfish, ocean fish (tuna, salmon, cod, etc.) 
Oats and barley
Legumes (beans and peas) Also having trouble with peanuts now. 
Leafy greens (lettuce, cabbage, broccoli, cauliflower, greens, etc.)
Squash, zucchini, pumpkin, cucumbers
Most fruit: Strawberries, melons, apples, pears, grapes, bananas, kiwi, cranberries and anything in those families. 
Coffee

Yes, I did the elimination diet. Yes, I reacted to EVERYTHING on the list. 

3. Food intolerances
Milk, ice cream, yogurt, citrus, tomatoes, soy, beef, rice, peppers, and  corn: Can have these only occasionally due to reflux. Yes, I have had surgery and take medication daily. I still have reflux. 

4. Something in most of the "diet" foods gives me bad stomach problems. These do not get better over time. The frozen dinners are the worst. 

5. I have been warned not to overeat the fruits I am not allergic to, cherries, pineapple, blueberries, and peaches, because that could cause me to develop allergies to them later. 

6. Eating out (especially for lunch) is a big part of my social life since I had to retire. I need to have a reason to make myself get dressed and out. It would be really easy to sit on the couch. Lunch is when I connect with friends. 

7. I am essentially left with whole wheat bread, cheese, freshwater fish, chicken, pasta, potatoes, ground beef, pork, eggs, cashews, almonds, pecans, and onions that I can eat on a regular basis. 

8. Major pitfalls are a small freezer, grabbing snack food because it is easy, especially at night, when I am tired and don't want to cook, a husband who is a junk food junkie and very hard to please, and a deep and abiding love for chocolate. 

I am fairly fortunate that, despite my weight, I have no problems with blood pressure or blood sugar. But, I need to get some of the weight off my knees! There has to be a way to do it with my limited food choices and no exercise. The key for me is going to be portion control and limiting late night nibbling. 

I can do this. 

The House Without a Christmas Tree

When I was a little girl, there used to be a Christmas show on every year called "The House Without a Christmas Tree." The basic plot of this show was that this little girl's father, embittered by the fact that his wife died in childbirth while his child lived, refused to show this child any affection. He refused to celebrate Christmas, and this little girl had never had a Christmas tree. Of course, there was a happy ending to all this. The father woke up, smelled the coffee, and decided to get this child a tree and love her after all. 

For the past two years, due to the illnesses and deaths of first my father, and this year, my father-in-law, our house had been without Christmas trees. Just no time or energy to put one up. 

Until yesterday. 

My husband saw headlights in the driveway and looked out the window to see who was here. I saw a precious friend come up my steps bearing a lit and decorated Christmas tree. I brought it inside, made a star for it out of bead left over from making Christmon ornaments, and plugged it in. Then, I cried. 

Our house is no longer the house without a Christmas tree. 

My heart is full. 

Christmas Party

These past 3 Decembers have not exactly been conducive to Christmas celebrations. In 2010, my sweet stepmom was in ICU for several days. In 2011, my Daddy died after being in the hospital for 20 days on December 15th. And, of course, this year, my precious father-in-law passed away December 8th. There has simply been no time, or energy, to get things out of the shed and put them up. 

I am one who loves to decorate for Christmas. My tree is precious to me, decorated with hand crocheted snowflakes from my mother-in-law,  given to me and my husband on our first Christmas together. Old fashioned Santas given to me by my mother shortly before she passed away Christmas of 1990, that survived being in a room that was destroyed by a falling tree after Hurricane Andrew are lovingly placed every year. My tree topper was given to me by one of my dearest friends many years ago. I have a partial Nativity that my mother and I found in a "junk" shop in Jackson and fell in love with. 

So yesterday, I went to a Christmas party for the first time in several years. I had the most marvelous time. My friends Alex and Dylan had decorated beautifully, cooked a wonderful meal with the help of friends bringing in dishes "potluck" style, and had gifts for everyone. I was tired and in a certain amount of physical pain when I arrived, but I soon forgot all that in the company of fun and creative people. Many of these folks are young enough to be my children, but I enjoyed conversing with them more than most people my own age. They still have hope for the future and plans for how they want to get there. 

So even with no tree or decorations, no time to really buy Christmas gifts, and no energy to really "do" Christmas, I felt warm, valued, and loved. A tiny flicker of Christmas Spirit was ignited. And I am going to fan that flame. 

The Bird Clock

When my father-in-law passed away, I was asked by his family if there was anything I wanted to have to remember him by. I thought for a few moments and pointed to the "Bird Clock." 

Mr. Sanders had owned this Audubon Society "Singing Bird Clock" for years. And even after years of that clock being in his home, it still startled me everytime the hour struck and I was twittered, hooted, or honked at. I used to make my thumb and forefinger into a "gun" and pretend to shoot the darn thing. I think my little gesture used to amuse my father-in-law, somewhat. 

Today, the cotton pickin' bird clock was indeed brought into my home. And it is already startling the wits out of me on the hour. I am going to have to figure out just what to do with this thing. Maybe I can disable the bird calls and just use it as a wall clock? Or maybe I just need to continue to take the bad with the good. Have a listen. What would YOU do??

Goodbye, Mr. Sanders

My precious father-in-law passed away last night surrounded by all five of his children. Alice, Mike, Bill, Jerry, and Becky were  there to watch him take his last breath as he journeyed from this life to the next.

The thing Mr. Sanders was most proud of was his children. It delighted him that they all got along with each other. He was proud of the people they had become.

When I married into the Sanders family, Mr. Sanders "took me to raise." He treated me like I was "his." I never, ever felt like I was an outsider. I felt like I had a second "Dad." 

Rest in perfect peace, Mr. Sanders. You deserve it. 

Doomsday?

I actually know several people who are gathering supplies in anticipation of "Doomsday." Some people believe this event is going to happen because Obama was re-elected. Others believe that this is going to happen for other reasons. 

Don't get me wrong. I believe in keeping enough supplies around to get by during the average natural disaster. I have some bottled water, canned food, batteries, etc. And, probably, most of my neighbors here in Mississippi do as well. To me, that is just smart. 

But, this extensive hoarding for "Doomsday" is just not something I am going to do. First of all, if something happens and most of my loved ones are gone, I don't particularly want to be here either. I can't imagine a world where the only people alive are me and the other hoarders. Secondly, the idea of hoarding, to me at least, implies that I don't believe that God is going to provide for me. And, to this point, He always has. And I don't think He is going to stop providing anytime soon.

29 Years

Twenty-nine years ago, I stood in front of this mirror in Bill's aunt's house and, just for a moment, had a tinge of panic. Marriage? Forever? What was I getting myself into? 

Unlike so many these days, I really did not enter into marriage lightly or unadvisedly. I never thought of it as something I could get out of if I was unhappy or bored. 

When I married, I was 24, college was behind me (at least for the time being) and I had plans for the future. I was alone for about a year an a half between a previous relationship and Bill coming back into my life. 


That "alone" time turned out to be a really good thing for me. I had never been the kind of person who "needed" a man. Indeed, I feel sorry for people who "have" to be in a relationship. Who are afraid to be alone. Who allow their relationships to dictate who THEY are. I cringe when a couple tells me they "complete" each other. It takes two complete people to make a healthy relationship. My alone time gave time to think and decide what I really wanted out of a relationship. Honesty, trust, and respect were very high on my list. 

I am not saying that Bill and I have not had our ups and downs. We, like all married couples, certainly have. I wanted to call it quits when I lost my sense of self for awhile. But, we have learned to give each other space to pursue our individual passions. We have learned that we can be apart and still be "together." I love Bill, but I am not in this relationship because I "have" to have him. 

Like my psychology teacher once said "It takes two healthy "I's" to make a "We."

She was right.

Dad-less Thanksgiving

Thanksgiving was my Daddy's holiday. He was an excellent cook who truly (with a  little bit of grumbling!) enjoyed hosting the yearly gathering. He would assign dishes to the rest of us, not trusting us with the turkey, the dressing, or his cream style corn. We could bring the lesser things like lima beans, stuffed eggs, and dessert. 

With Daddy, there was never any set limit on people who could be invited. Every year, he would have his children, his stepchildren, the spouses, the grandchildren, and the great-grandchildren. Also included were my sister's in-laws, and any other folks who needed a place to be on Thanksgiving. It was not unusual for people to be coming in and out to eat for several hours. There was always plenty.

This year will bring a lot of changes. My stepmom is having her family over to the house that she and Dad shared. My sister is having her in-laws at her home. And I will be attempting my first Thanksgiving dinner on my own for my seriously ill Father-in-Law, my husband, Bill, and Bill's two brothers. While the dressing, salad, veggies, and stuffed eggs will be from scratch, I am depending on Heavenly Ham for meats and my sweet stepmom for a promised pecan pie. 

While I am sure it will all be OK, the "man of the hour" will not be there on the other end of the phone to coach me through my dressing preparation or answer the million questions I realized I never had answers for until Dad was gone. 

What I would really rather do this holiday is to just take off to parts unknown for a week. But, if I left Thanksgiving Dinner to the dubious talents of the Sander's brothers, I would NOT be my father's child. Dinner will be as nice as I can possibly make it. 

Daddy would approve. 

Enough!

Every few days, I admit, I get overwhelmed with the number of requests that are made of me to share photos, copy statuses, and "like" pages.

If did this for all 462 friends, my wall would be unreadable, clog up the feeds of my friends, and not leave me any time to check on friends having a hard time, ask about their family members, and find out what I might be able to do to help. 

For the record, I live with several "invisible diseases." And I know and try to support my friends who are also living with these. I don't have to copy a "spiel" into my status to be aware of my friends who do suffer. Some choose to talk about their suffering. Some prefer not to. I try to honor my friends by letting them take the lead in such discussions.

Yes, I hate cancer. My Daddy died of this disease and My father-in-law is terminally ill with it. Not to mention other family members and friends I have lost over the years. Donations to the American Cancer Society, Blair Batson, and St. Jude's will do more for these folks than copying a status.

I hate animal abuse and give to organizations that try to prevent this. Sad, sick animals on my wall only make ME feel sad and sick too. I know what goes on and where to send my money. 

And the one that makes me the most crazy are the ones implying that unless I share this status or that picture, I am denying Jesus, don't believe in God, am ashamed of the Gospel, etc. None of this is true and not constantly sharing those things on my wall does not make me less of a Christian.

If I shared these every time I received them, my wall would never reflect "me." I try very hard not to "overshare" and I choose what I share very carefully. I have had to "hide" friends who clutter my wall with so many posts that I don't get the truly important things from other friends. Your latest 19 cat pix are cute, but I really want to know how another friend's surgery went. 

Be selective. Your friends will appreciate it. 

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.

Overload

I love Edvard Munch. His simple, expressive "Scream" painting say it all some days.

This week has been one of those weeks where it seems that I have just had too many things (words, problems, situations, ideas, etc.) thrown at me in rapid succession.

The problem? I just can't seem to take it all in as fast as I used to be able to. I don't know if it is just age, fatigue, or what. Due to many factors, I don't sleep as well as I would like to. I know lack of sleep tends make me feel "dull."

I am pondering as to whether or not I need to step down from some obligations (NOT my watercolor classes at the Senior Center!) and let younger, more energetic people handle them. Unfortunately, these same folks tend to lack the time to follow through and maintain things.

For the time being, I guess I will just scream silently and hope things settle down soon.

Father's Day 2012

Tomorrow will be my first Father's Day without my Daddy. And it is hard to believe he has been in Heaven for six months already. 


Tomorrow, the newly added handicapped restroom at Yokena Presbyterian Church will be dedicated in Daddy's memory. Now I know that some will see this as perhaps undignified, but I see it as perfect. 


Because of treatments for his prostate cancer, and following the removal of a sizable portion of his colon, Daddy always knew where every restroom was in every store, restaurant, and gas station. And, as he was an extremely practical soul, he would heartily approve of the memorials given to him be used for the purpose of a more accesible restroom. 


Daddy loved Yokena Presbyterian Church. When asked during Sunday School class one day what he thought would happen after he died, Daddy made the following quip.


"I'm not worried about it. I am going to be a little angel with wings floating around everwhere, checking on the Sunday School class." 


Tomorrow, I think he will be watching from Heaven. And beaming with pride. 

Singing

Lately, I have found myself singing around the house again. For the longest time, even though I love to sing, I didn't do this. There just did not seem to be any point. I wasn't going to be singing a solo anytime soon. Why keep in shape? 


But since I have been really using my voice on a regular basis (not just holding back and trying to blend) I find that I am getting back notes and a degree of breath control I thought I had lost. And what a joy this is! 


Next Sunday, I will sing at Yokena Presbyterian Church. In July, I will be singing at First United Methodist Church in Clinton. Then I am off to Hermanville, MS for two Sundays. And, of course, I hope to make a stop a Truly Ministries during this time as well. I am grateful to them forever for allowing me to spread my wings and get back what I thought might be gone forever. 


This is just part of "The Lord's Prayer" from last Sunday at Truly Ministries. Not perfect, but so much better than I thought it would ever be again. 

A Pocket Full of Nickels

This poem is by the late Bev Nason, who was also "blessed" with Myasthenia Gravis. She really hit the nail on the head. Substitute prednisone for Mestinon in my case. And my variety of MG does not go into remission.

A Pocket Full Of Nickels

By Beverly J. NASON  

On a good morning, we awake with a dollars worth of invisible nickels
in our pocket, or perhaps we find them after our
first dose of Mestinon.
We must decide how to spend this precious supply.

Shall we shower, dress, make the bed, have breakfast, go to a job,
and recklessly spend them all at once?
Perhaps, we should just use twenty-five cents,
and dress without the shower or shave, leave the bed for later,
and spend five to fifteen cents for breakfast.

We alone may judge from our recent experience.
Having decided, we act, and our precious deposits is made into an
invisible slot, filled with invisible batteries.
These batteries kick in slowly and we drain their reserve.
When it is close to gone, we force ourselves to rest.
As the day progresses, we decided to do a small chore.
The shave, shower, shampoo? Five more nickels perhaps?
The bed? One nickel perhaps. Cleaning house? Going to work?

How many nickels will we have to spend today?
For many of us, we can barely afford one nickel at a time, today.
If we have the luxury of time for a rest period or a nap,

We might awaken with a sudden new supply of nickels in our pocket.
Probably our next dose of Mestinon will provide us with a
fresh supply. For others, we may find we've chosen unwisely
and squandered our day's wealth,

Or borrowed from them tomorrow, to do what had to be done,
or simply what we wanted to do to improve our quality of life.
the debt must be repaid, and time in bed will be the price.
We can gamble them all away, or spend them gratefully.

When we awake, morning after morning, with pockets full of nickels,
Such an abundance that we no longer have to count them
We have achieved Myasthenia Gravis remission

May you all have "pocket full of nickels"