March 5, 2014
I spoke at an MS event in Birmingham, Alabama, on Saturday, March 1, and told the story of my MS diagnosis almost 16 years ago. I have posted it here in honor of MS Awareness Week and in the hope that it will help educate others about this chronic autoimmune disease that affects the central nervous system:
I had my first MS symptom in 1990. I didn’t know it was an MS symptom; I just knew I didn’t feel right. I would find out years later that it was transverse myelitis, known as the “MS hug.” It was a band of numbness and tightness around my rib cage. I saw a neurologist, but he was unable to diagnose the problem. He prescribed an antidepressant and said it would subside. It did subside (because that’s what MS does), and I didn’t think anything more about it until I started noticing other problems, such as weakness in my right leg and urinary incontinence. I saw more doctors, but they couldn’t diagnose my problem either. I moved on to a chiropractor and then to a massage therapist, who noticed a problem with my gait but told me it was because my right leg was shorter than my left. (He was wrong.) I was about to give up when my gynecologist referred me to a urologist for my incontinence issues. She suggested several treatments, but the problem continued. I went back to see her again and again with no results.
During one visit, I mentioned I worked at Alabama Power, a large electric utility the serves the lower two-thirds of the state. (I have no idea why I told her that. She may have asked where I worked.) She told me about a problem she was having with her electric service. I gave her a number to call about it, and I figured that if she was going to tell me about her problem, well then, I was going to tell her about the weakness in my leg. Telling her about a second symptom made all the difference. She determined that the problem was probably neurological and said that I might have a demyelinating disease. She referred me to a neurologist (a different one). After an MRI and other tests, he diagnosed it as MS and referred me to an MS specialist. That was in 1998. It took me eight years to get a diagnosis. My story is about persistence and resourcefulness. If I had given up instead of being so stubborn about it, I might have never been diagnosed.
January 5, 2014
I did a pretty good job of keeping my New Year’s resolutions for 2013, so I have fine-tuned them and added some new goals for 2014.
10. Eat according to Dr. Terry Wahl’s dietary protocol
9. Attend Pilates Reformer class once a week
8. Attend MS aquatics class
once twice a week
7. Work out with personal trainer once a week
6. Write in my journal daily (the first part is new) and blog once a week
5. Work crossword puzzles and do Lumosity brain exercises (the second part is new) daily
4. Play piano daily (new)
3. Meditate daily (new)
2. Minimize stress, enjoy life and relax
1. Be thankful.
October 20, 2013
I would like to correct an error in a previous blog posting.
The error was unearthed by a wise reader, who wrote: “Hi, you had written that Hamlet said, ‘In my heart of hearts (the second “heart” isn’t plural.) Like everyone else, Hamlet only has one heart. Feel free to look this up to be certain that I am correct.”
You are indeed correct, gentle reader. I went online and searched for the phrase and found very few references to Hamlet’s heart of heart (one heart, that is). I think it’s fair to say that most of today’s readers and writers — and I include myself in that group — seem to have bastardized the phase at almost every opportunity. In fact, the only correct reference I found was in William Shakespeare’s original work, “The Tragedy of Hamlet, Prince of Denmark.”
Thanks, again, dear reader. I am happy to set the record straight.
July 13, 2013
I’m an introvert at a writer’s conference in LA (lower Alabama). The Alabama Writers Conclave conference, to be exact. So I thought that in order to network more successfully today and tomorrow, I should pretend I am an extrovert. But then I immediately took that thought back mentally — if that’s possible — because it’s just way too scary. And I thought that maybe, just maybe, I could move toward extroversion on the introvert-extrovert scale.
So I Googled, “What is the word for being halfway between an introvert and an extrovert?”Google said the word is “ambivert.” So that’s what I’m going to be today and tomorrow — an ambivert. Or at least a “playlike” ambivert, as we say in the South. It’s a step in the right direction, anyway.
I like that word: ambivert. It sounds as if I don’t give a damn either way.
April 25, 2013
Excellent advice for writers!
Originally posted on Owen Egerton:
The Austin Chronicle invited me to share my thoughts on writing. I made a list of thirty ideas that help guide me. Here it is: http://www.austinchronicle.com/blogs/books/2012-11-30/type-so-hard-you-bruise-the-screen/
April 21, 2013
I blogged on January 1 that one of the ways I would manage my MS symptoms this year would be to eat according to Dr. Wahls’ dietary protocol — it’s dairy free and gluten-free and involves eating lots and lots of dark green leafy vegetables.
I have kept that resolution for more than 90 days … well, for the most part. Let’s just say I continue to ease into my new eating habits.
Dairy free: No milk — I can do that. No yogurt — okay. But no cheese? No way, at least for now, because cheese is just too tasty. I sneak a little cheese into the occasional omelet, and I sometimes nibble on cheese while cooking those oh-so-healthy meals. I have yet to ban it from the refrigerator.
Gluten free: The sad truth is that I crave carbs — especially bread, from whole wheat loaf bread to Southern biscuits to Yankee bagels. And dinner rolls, pita bread, English muffins and banana bread. The list goes on. Staying away from bread products for the past three and a half months hasn’t been easy, and I’ll admit that I have cheated from time to time. I have been known to reward myself with one plain croissant (or a chocolate croissant if they are out of plain) after I finish my weekly grocery shopping. But when that croissant doesn’t keep the gluten monkey off my back, I would gladly serve hard time in healthy-diet jail just to get my hands on one Panera Bread cinnamon-crunch bagel, toasted, with butter.
Lots and lots of dark green leafy vegetables: That means greens — as in those Southern delicacies, turnip greens and collard greens. Who knew they would be good for you. And don’t forget kale. Dr. Wahls recommends the dreaded kale because it provides so many of the nutrients that I need. But to tell you the truth, I find it difficult to eat turnip greens or collard greens, much less kale. When I complained about the taste to my doctor, she suggested I put the kale in a juicer and make a smoothie. I told her I would try it. And just like that, an image of Yoda popped into my mind, as he told Luke Skywalker, “Do. Or do not. There is no try.” I don’t think Yoda ever tasted a kale smoothie.
I went to the grocery store and bought a bunch of organic kale. When I got home, I opened Dr. Wahl’s book to the recipe section and made a Kale and Pear Smoothie. At least the pear part sounded good. As I tasted my green drink, which also included grapes, lemon juice and a banana, I remembered an episode of the Oprah Winfrey Show in which Dr. Mehmet Oz made one of his famous green drinks for her. As I recall, she took a sip and said, “It’s a glass of fresh.”
Oprah, I hate to disagree with you, but my green smoothie did not taste like a glass of fresh. It tasted like I had opened my back door, walked into the yard, gotten down on my hands and knees, and grazed on zoysia grass.
I have developed a theory as to why Oprah would think that Dr. Oz’s green drink is “a glass of fresh.” Oprah was born in Kosciusko, Miss., and lived there until age 6, so she had the opportunity to acquire a taste for greens at a young age. And that’s why the green smoothie tasted like a glass of fresh to her. I, on the other hand, grew up in northeast Oklahoma, where the wind comes sweepin’ down the plain. We ate the turnips and fed the greens to the hogs. Not that we ever raised hogs, but if we had … .
I understand that Dr. Wahl lives in Iowa now; however, I can’t help but wonder if she grew up in the South.
April 1, 2013
(Part Three of a three-part blog entry)
At about this time last year, I wrote an op/ed piece that was printed in a local newspaper (Trip to Jefferson County courthouse with MS an unpleasant one), in which I told about the problems I encountered because of my inability to walk long distances or stand for long periods of time. Well, here I go again: I’ve climbed back up on my virtual soapbox to blog about people who work in the customer service business and provide them with some suggestions to help them better serve customers with disabilities.
Part One of this post, published Feb. 20, addressed my concerns involving restaurant staff members who seat people with disabilities. Part Two, published Feb. 27, examined a lack of sensitivity among managers and employees of big-box stores who are responsible for maintaining the store’s motorized shopping carts for people with disabilities. And, Part Three — this post — focuses on ways that hotel and motel staffers can better serve guests who have a disability.
PART THREE: GOING OUT OF TOWN
Travel can be difficult for people with disabilities. Most hotels and motels have handicapped accessible rooms, but not all handicapped rooms are alike. For example, some of them have wide doorways that accommodate wheelchairs, while others have grab bars in the restroom, and still others have both. It is important for you to match the handicapped features of a hotel or motel room to the accommodations you need.
Here are three things to remember when reserving a handicapped room:
1. Make your room reservation as soon as possible. Some hotels and motels have a limited number of handicapped rooms. A few do not have any handicapped rooms.
2. Make your reservation by telephone and speak with a real live person. If you make a reservation online, you probably won’t be able to ask questions about the features of a handicapped room. (However, a few hotel and motel websites describe the features of a handicapped room, or, better yet, have a virtual tour of one of their handicapped rooms.)
3. Ask the reservations clerk enough questions to ensure that the room incorporates all of the accommodations you need.
Sounds easy enough. But I learned my lesson the hard way a few months ago when I reserved a room that did not have the accommodations I needed. When I made the reservation, I asked for a handicapped accessible room, but I didn’t ask about the specific handicapped features of the room.
When I checked in, I realized that the reservation clerk had assumed incorrectly that I would be using a wheelchair. The room was located on a long walkway with rooms on only one side, and I counted 19 rooms between mine and the front desk. The meeting rooms were even farther away. After I made the long walk from my room to a meeting room and back, I knew that I needed a room closer to the hotel’s facilities.
I called the desk and was given a room much nearer to the rest of the hotel. Even though the room was not considered handicapped accessible, it met my needs. (I was fortunate that another room was available.) I know now that I could have avoided this inconvenience if I had inquired about the location and accommodations of the room before I reserved it.
It also would have been helpful if the desk clerk had noticed I was using a cane and had taken the initiative to ask me if I would have a problem walking the distance to the room.
I suggest that the management of lodging establishments provide their employees with additional training to ensure they can meet the needs of travelers with disabilities.