Lupus Awareness Month
Over the years, I've know people to say, "There is nothing worse than lupus" and maybe we all feel that in our worst moments. There are times when symptoms are so invasive and pain is so severe we are almost shattered in mind and body and smashing our heads against the wall would seem like pain relief, at least while we'd be unconscious.
In some ways, when it tries to burn us down to the ground, lupus does feel like the worst thing that could happen to anybody. If we truly think it's the worst catastrophy ever, maybe we're not reading the daily news. Nowdays, there's a lot of competition for most horrible event ever. Lupus can be our catalyst for change and wisdom, but only if we know that, far worse than having lupus is thinking our lupus is the be-all and end-all of our whole lives, because then it surely will be.
October is Lupus Awareness Month, although, for those of us who have it or have a loved one who has it, it's every month of the year. Still, every October we are reminded that there is no cure for lupus, that there has not been a new and truly effective medication for lupus in decades, that many of us live with obvious symptoms but no definitive diagnosis and that somewhere, every day of the year, someone dies because they have lupus.
We may feel helpless sometimes against the force of this powerful disease but there are things we can do to assert ourselves, contribute to research and educate others. Lupus used to be one of the most unknown illnesses in the world but the mystery guest is signing in and we are speaking up. We can’t expect instant abracadabra results – ever tried to pull a wolf out of a hat? – but we can do a lot to rattle Ol’ Wolfie’s cage and loosen his grip on our lives.
We can document our symptoms on paper and give copies to our doctors to aid in diagnosis and treatment. We can share the URLs of good lupus websites and weblogs with family and friends. We can write letters to the editors of our local newspapers, to let them and their readers know the significance of this month and share non-profit phone numbers, URLs and addresses. These actions won’t cost us more than a couple of sheets of copy paper or envelopes and postage stamps.
We can buy pins, books, wristbands ($1. each + shp.), Lupus Now magazine subscriptions and more through the Lupus Foundation of America
(LFA) and support lupus community efforts and research.
St. Thomas’ Lupus Trust
(STLT) in the UK offers wristbands in two sizes and charges are contributed to that charity. Click Now will contribute 50% of all revenues earned from your Ask Jeeves, Google, LookSmart and Yahoo searches if you set up your homepage at St. Thomas’ Lupus Trust. To do that, visit the STLT Click Now
page and encourage family and friends to make the switch, too.
If we’re well enough to get out and about, we can volunteer and help our local lupus organizations to disseminate information, help hold meetings and sit on boards. Lupus Canada
has a great need for volunteers right now.
Throughout the world, lupus organizations are made up of ordinary individuals who have lupus, love someone who does or just want to help others. They're all struggling to share information and compassion with those who need it badly. If we can afford it, we might donate funds each month or even once a year. We can ask those who might give us gifts to make donations instead for this crucial cause. There are many lupus research links on this page and other sites – please use them well.
Beware of those who offer lupus wristbands and other items at marked up prices - that money doesn't support lupus research, it supports their lifestyles. There’s no need to pay big bucks for lupus t-shirts with negative slogans made for profit. Why fill somebody’s personal pockets with your hard earned cash and take an emotional downturn, too?
You can make your own shirts and maybe a few for holiday gifts for less than $15. each plus shipping or maybe even with no shipping fees. If they’re upbeat, you’ll feel better each time you slip one on and you won’t just be informative, you’ll be positive and you’ll be remembered.
Check out do it yourself (DIY) sites like Zazzle.com
. Drop in on CustomInk.com
and other DIY sites. Type “make your own t-shirt” into your search bar and explore. Don’t forget, when you search you can be automatically contributing to lupus research.
Just don’t anybody try to sell me any lupus items that prey on our fears and at a jacked-up price or I’ll sic my rabid wolf on ‘em. We should be promoting our community, not pilfering from it. To paraphrase an old Beatles song, I am you, you are me and we are all together – we are the faces of the wolf.