I have a dream...

Okay, so I have a few dreams really. And they're not the same kinds of dreams that MLK had of everyone getting along. Don't get me wrong, that dream is still alive inside me somewhere, but those aren't the kind of dreams I want to talk about here. My dream has to do with helping other people, especially young people, handle the unfortunate things that life throws at them. Not just the "normal" unfortunate things, but the kinds of things that change a life so completely that it's never the same. The kinds of things that leave you incapacitated, feeling "left behind" by your friends...and the "real" world.

For those of you who don't know me and either stumbled upon this blog by accident or are just starting to learn about my life, here's a quick bit of background. I have been dealing with chronic Lyme disease since I was 15, a time in my life when I was supposed to be stretching my wings and becoming more independent. I have been on and off treatment since then and dealt with all the ups and downs of that. Oral treatment is easy enough to deal with, but when the treatment turns to intravenous antibiotics it's a little more noticible that something is wrong. It's tricky to try to hide a PICC line in your arm and hard to have to tell people that you can't go out at night because you have to infuse at a certain time. Now at 23 I am still in the midst of the nightmare, most of my "healthy" friends off living their lives and I'm usually not up to hanging out with the few who are still around.

So, I find little ways of keeping up my spirits and making my world of medical supplies more fun and light-hearted. I've named all my medical stuff: my port-a-cath is Winnie the Port, my portable IV pump is Eeyore, and my three IV poles are Piglet, Edgar IV (Edgar the forth), and Roland Polansky (Roly Poly for short - that's my pole with wheels). Now that it's getting around to Halloween, I decoraged my poles with Halloween and fall stickers and other fallish things. I have plans to put tinsel and/or Christmas lights on the poles when it gets to be closer to the winter holidays and I like to decorate my room appropriately for the season because I spend so much time resting in bed or in my comfy chair.

Okay, enough background info on me, now for my dream. Since it generally sucks to be sick, whether in or out of the hospital, and have to be surrounded by medical stuff, I would really like to help cheer up others who are dealing with things similar to what I am. My dream is to put together a program to provide little care packages to kids and teenagers with things for them to decorate IV poles with (stickers, string lights, hanging ornaments, etc.), Vetrap (if the patient has a PICC line or peripheral IV line), a special stuffed animal, and maybe a blanket to help make them more comfortable. It would also include arts and crafts supplies so they could make their own decorations for their medical equiptment and hospital room or bedroom. Anything to help make things feel a little less intimidating and a little more fun!

This dream is part of a larger one: to start a non-profit organization to help people with Lyme disease. Through this non-profit I would continue organizing and running the retreats that I have been running for the past year, organize and run support group(s), go out and give informational sessions/presentations about Lyme disease, and any number of other things that have been growing in my head for the past few years. Each dream is achievable, but each requires a good deal of work and it's rough to try to get anywhere when the dreamer is herself sick and has very limited energy. But as long as I continue to dream about them and formulate plans I believe that one day my dreams will become reality.

Now you know my dreams. What are yours?...



Yours,
Penguini