Monday, July 25, 2011

My Wish List

If you had two minutes to tell someone anything you wanted to about having RLS/WED, who would you tell and what would it be? Remember, you only have two minutes.

Sunday, July 17, 2011

Who, Me?

I'm on facebook quite a bit, reading the posts people write about RLS/WED. I answer when I think I might be able to help. I also check out the discussion board on the RLS/WED Foundation website, as often as I can. I get phone calls and emails from people who suffer with this disease. All are looking for help; medications don't work, doctors can't be found who understand, family and friends just don't get it. I wish I had the magic answer for everyone because I really do understand how they feel. I've had RLS/WED most of my life and although it is mostly under control, there are time like tonight when it is truly miserable.

Most of the people I "talk" to are in the early stages of finding out what they have and trying to find relief. Others have had this for years and are barely hanging on. Still others are fighting back in whatever ways they have. The first two groups can only think about survival at this point. The last group, while having just as many problems, are actively taking a stand in the RLS/WED arena.

I am not condemning anyone here; each person has to do whatever it takes to get through the day (or night). What I am doing is pointing out that the people who are active in this fight seem to handle it all better. They seem to have more optimism, more spirit, more....SOMETHING! Maybe its just that they feel they have more control over a disease that wants to take over our lives.

Before I get bombarded with replies from the first two groups (that would actually be a good thing!), let me explain what I see. People who are actively involved in working towards better lives and a cure do so in many ways. Many donate frequently to the Foundation so that the Foundation can continue the work we cannot do ourselves. Many are support group leaders and advocates. Many watch the media and write responses to the mainline idiots out there, trying to set the record straight. We have patient representatives meeting with the FDA to let them know how important new medications are. We have people who try to help others on facebook and the discussion board. But way too many wait for others to do the work and complain when results don't come as fast as needed.

You may not be able financially to donate much. But if you really want to, you could find $5 occasionally to send. You can write letters to the editors of your local newspaper or ask the Foundation for a general info letter that you can send. You can support others on facebook or the discussion board. But the most important thing you can do is educate yourself about the disease that is running your life. Make sure your information is correct and up-to-date at all times. Pass that information on to others when you can, especially if that person is your doctor, a friend or family member. Learning all you can about RLS/WED is the most important thing you can do and it doesn't cost a thing. Except maybe some time. At 2:00 a.m. when you are walking the floor, read a book about RLS or go on-line. If you need to walk a few minutes between pages or sites, go ahead. If you get just one tiny bit of information during that time, then RLS didn't steal another night away from you. Will you still have RLS/WED? Of course. Will you be gaining some control over it? You bet and that helps--knowing that you are doing something.

Moon and stars,

Friday, July 1, 2011

Independence Day

"We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable rights, that among these are Life, Liberty, and the pursuit of Happiness."

And so, for those of us who live in the US, these words from the Declaration of Independence are the cornerstone for our country. It is an important part of our history and of our daily lives. It has been used, misused and abused but it still stands strong.

Monday is July 4th, the day we celebrate our nation's independence. It is a day of picnics, parades and fireworks. Despite the reason behind this day, how often do we take the time to think about why we are really celebrating? I know I seldom do. I take for granted all the benefits, priviledges, and gifts I have that others fought so very hard for.

Rights--our forefathers wrote that we have certain rights, not gifts, not choices or chances but RIGHTS. These rights are for Life, Liberty and the pursuit of Happiness. Notice that they started each with a capital letter; just to make sure it was understood that these rights were important. We have a right to life, a right to liberty and a right to PURSUE happiness. It does not say we have a right to happiness, just the right to pursue it.

I wonder if any of the writers or signers of the Declaration of Independence had RLS? Don't laugh; if 7% of the population has it, then it could be that one of them was a fellow sufferer. I'm sure that even if one or more had it that they were not thinking about it when they wrote this document. But they thought the pursuit of happiness was a right; pretty important suff. So in our pursuit of Happiness, why do we often feel guilty, embarrassed, or whiney when we ask for help with RLS? Many things can and do make us happy. Some we have control of and some we don't. But if each of us could find a doctor who would work with us, medication that would alleviate our suffering and someday soon find a cure--wouldn't we be happy? Wouldn't we be beyond happy?

The pursuit of happiness does not mean we can run roughshod over others to get what we need (or think we need). It doesn't mean we can be nasty, rude, hasty or hurt others to get that happiness. But it does mean that we can go forward in insisting on quality care, new and better medications and a cure without feeling that we don't "deserve" those things. We don't have cancer, we don't have a diseased heart...but we do have a disorder that makes our lives very, very unhappy. We have the right to pursue a good quality of life, a happy life.

I am fortunate that the Foundation, Board of Directors, Medical and Scientific Advisory Boards for RLS are pursuing my rights. That is what they do--fight for our rights to happiness in a world that seldom even notices that we exist. I thank them from the bottom of my heart and hope that you too realize the work they do on our behalf.

The pursuit of Happiness. I hope our independence day comes soon, no matter where we live.

Moon and stars,