Monday, September 28, 2009

Oacoma was awesome

I had such a good time this last weekend. I was diagnosed with multiple sclerosis one year ago, and it has been a year of ups and downs. One of the ups has been my association with the local program director for our chapter of the National Multiple Sclerosis Society, Nancy . She has done so much for the people in our chapter, and she has such a passion for helping us. Most recently she organized a weekend retreat for those diagnosed within the last year or two.
I didn't think I'd be able to go, financially there was no way we could afford it, so I emailed Nancy. She said not to worry, grant money was available for that. Then my husband had a schedule conflict and I knew I couldn't handle that long a drive, so Nancy offered me a ride out with her. She is so great!
We arrived Friday night about 7 pm and went down to dinner in the restaurant. We had so much fun talking we didn't head up to our rooms until 9 pm. The next morning I enjoyed breakfast while the sun arose over the grand Missouri River, sparkling and waving against the shore. Absolutely beautiful! I definitely want to come back with my family someday.
The program started about 9:30am, and there were about 12 of us; plus presenters and sponsors: a PA who specializes in MS, an MS certified nurse, a nutritionist, and a nurse representative of one of the pharmaceutical companies who manufactures MS meds. The ages of those attending ranged from early twenties to sixties or seventies. Some were very lively and outgoing, others held back, there were varying degrees of severity of disability, but we came together and learned a lot about each other and our disease.
There was a young girl there who will be getting married to her fiance in less than a month. She had lots of questions, he spent his day in the hotel lounge. She was so sweet. I don't think he was. I invited her to join us at our monthly support group meetings. I hope that she can find a way to get there. Due to her seizures, she is not allowed to drive, and I doubt that man of hers will bother himself. However, I explained the bus system to her, and she later asked me for the details again of where and when. Hope springs eternal...
There was a mother of three who had taught herself to play nine different musical instruments from piano and organ to flute and trumpet. She loved to play, but is no longer able to do it. The anguish on her face told the story better than any words could do. When I couldn't sleep the next morning, I found her page on Facebook and sent a friend request, and then told her at breakfast. Her face lit up like I had given her the most wonderful gift... maybe to her I did.
I am a big fan of action movies, especially those involving secret service, witness protection, and the like. Well, I met a real life character that could easily have come from any one of them. Her voice had the timbre of a man's and the accent of a Brooklyn Jew; her heart was easily as big as the Grand Canyon. She lives with her sister, who has ms, and it was obvious she would do anything for her, up to and including give her life.
Saturday evening we were playing a people bingo game involving finding out unusual things about each other. I was sitting and visiting with an elderly lady and her husband, filling out our bingo sheets, and I got up to go back to my seat for dinner. Later, she said, "I thought you were going to sit with me." So I told her I would sit with her at breakfast in the morning. The next morning I came down and sat with her, and she looked so surprised, like she didn't think I would remember, or that she thought I had been joking. She hugged me several times before she shuffled away to go home.
Each one of these people touched me so deeply. I crave continued contact with them. I would love to be able to get together with them every year for a weekend, to continue to support each other in this journey our bodies have undertaken. I will do everything I can to support them in whatever way I can.

Remember, it's better to love than to be right!

Sunday, September 27, 2009

It's 4:30 am and I am awake... again

What is it with me? No matter how much I try to get a good night's sleep, it just doesn't happen without drugs. So this morning I am in my room at the Cedar Shores Resort in Oacoma, SD, on the Missouri River. This is a weekend getaway for those newly diagnosed (within 1-2 years) with Multiple Sclerosis. I am having a great time. However, after finally getting to sleep at about 12:30am, I awoke abruptly at 3:00 am and have only been fitfully dozing and jerking awake since. Now, part of it is the whacked out AC noises (I think it was freezing up), but this is part of a growing trend since the summer. I will go to bed, fall asleep, and wake 2-4 hours later unable to get back to sleep until the sun is up and the family has left the house. Then I am miserable the rest of the day.
After talking to my neurologist last summer, I started taking lorazepam (Ativan) at bedtime when I was not able to fall asleep, and I just had a refill approved, but I am not to take it every night. When I do take it, I generally sleep a considerably longer time, but even then I feel fairly groggy the rest of the day. And what about this waking up in the wee hours? I can't take one that early in the morning, because I won't be able to function the rest of the day.
If this continues, I am going to ask for something I can take as a matter of course, like cymbalta or something. If you have had success with anything, I'd love to hear about it.

Remember, it's better to love than to be right.

Saturday, September 26, 2009

How did I come up with the name for this blog, you ask? Well, I love to read (books), crochet (hooks), and play Wizard101 (magic wands), and that is how I spend the majority of my time, although I will blog about whatever comes to mind on a given day.
This blog is an experiment for me. Please feel free to comment and let me know how I can improve; anything from content to style to appearance, whatever you like. I have been following a few other blogs lately, so thought I would give it a try. I am hoping it will give me a therapeutic boost and a venue for expressing myself in writing on a regular basis.
I have always enjoyed writing, but never was very disciplined about keeping a journal or anything like that. Now I have Multiple Sclerosis and am unable to work. As a result, one day often blends into the next, so again, blogging might be a good exercise for my mind.
I hope that you enjoy what you read and let me know what is on your mind, too.

Remember, it's better to love than to be right!