Tuesday, April 14, 2009

So this is how it is.....

I think I'm rather tech savvy. Heck I think I'm pretty life savvy! I can bake a loaf of bread, start a LGBT social group and fold an origami Noah's Ark before lunch. I can build myself a website and use an owners manual for the purpose it was intended. I've assembled all my IKEA furniture by myself. I own power tools.

I've been contemplating doing a podcast for at least a year. I think I could fill a half hour once a week. I am politically astute, I'm always reading, and I'm a pop culture vulture. So you might ask... "What's holding you back Jane?" The answer is that I have been reluctant to share everything about my life with you. The reason is that I don't want part of my reality overshadow the bigger picture of who I am . I've come to the decision that I can't go ahead with my podcasting plans and keep part of me under a rock. Honestly I really wouldn't want to. If I did I'd have to leave out some of the best stories! So here goes.......

Since I was 10 years old I have been dealing with systemic lupus erithmentosus. Most people who are diagnosed with this baffling disease have a moderate form. With good medical care most can live a long happy life. (A dear friend who happened to have SLE recently died at the age of 93!!) My SLE has proven to be harder to control. For years I have been on multiple autoimmune suppressants. These high tech drugs are suppose to keep my immune system from attacking me. Every system in my body has been under attack at one time or another... brain, heart, lungs, vascular system, blood, liver, skin, digestive tract and muscles. Even still the hardest thing for me to deal with has been the effect these drugs have on my appearance. I have lived a lot of my life as an attractive person. Not a classic beauty but attractive. I have always cared about how I look. The TOP photo on this blog was taken 10 years ago during my last remission and no longer reflects my actual appearance. Age can be blamed for part of that but lupus and treatments to control it are responsible for the rest. Ahh vanity.

My Rheumatologist tells me that the drugs are killing me slowly but the SLE will kill me quick if we don't keep it in check. I'm not looking over my shoulder for the grim reaper but I'm pretty sure I will be spared the ravages of advanced age. It's important to keep these things in perspective. You only have to watch the news to understand that there's far worse things in our world than death.

For the last 5 years I have been losing muscle mass due to Lupus Myocitis. My docs have tried everything to treat this but nothing has stopped it's progression. Recently I've undergone 6 months of wildly expensive experimental treatments that in the end had no beneficial effect on my withering muscles. (My insurance was billed for 356,000 per month for 6 months.)I am beginning to have a little trouble getting around. It's time to get a handicapped placard to use on my bad days. It may be that I will be in one of those embarrassing scooter thing-ys in a few years. Goddess please save me from that. My nurse sister wants me to have a "I've fallen and I can't get up!" necklace. It's true... I may fall in the shower someday.... but I'd drink out of the toilet for three days before I'd wear one of those things! There's a big difference between acceptance and complete surrender.

Thanks for taking the time to read this.

3 comments:

Natasha Yar-Routh said...

Having lost a Uncle to Lupus you have my sympathy and good thoughts for what little that is worth. I fully agree with your stance on the scouter and life alert thingy, never surrender or give up. I very much admire your bravery in opening up this aspect of your life to all of us.

I look forward to your podcast's if you decide to do them.

[LaLa] Lauren said...

Do the podcast! You will have tons of listeners, and lots of people already enjoy hearing you on Archerr.

Vtknitboy said...

hi hon! love your new blog! one comment, you DON'T have to share EVERYTHING! just what you WANT to! (caps for emphasis, not yelling!)
xo