Accidental Vacations and Other Random Acts

It looks like I accidentally decided to take a break from writing. My summer has been full of introspection, friends and family- when geographically possible. I've been spending a lot of time on twitter meeting some great people all over the world. I'm not exactly sure when it happened, but this summer I felt less like an anomaly and more like a member of a growing community. This community is chronically awesome, inspiring, into spoons, has depression, PTSD, is bipolar, has a sick sense of humor like me and too much to list here, but most of all, live with visible and invisible diseases or conditions. For such a huge group of people with so many different issues, we have a lot in commom.

Part of my adventure has been looking at my relationships woth others and setting boundaries. I started a Box Wine Book club on Face Book. I had to stop reading the first book. I'll be adding my next one as soon as I finish it. Right now I'm reading Setting Boundaries with Difficult People by David Leiberman. So far, it's pretty good.

Last week, I had the honor of representing The Scleroderma Foundation at the Orange County Fair in Costa, Mesa, California at the Bounce to a Cure Event. James did break his own World Record with over 206k consecutive bounces. His determination was inspiring. I had the honor of working with his brother Chris and had a blast. everyone should be lucky enough to have a brother like Chris. Watching him share his knowledge of Scleroderma and cheering on his brother was a privilege and I look forward to helping the Scleroderma Foundation in the future. Visit James' FB page and website for all the details and his years of inspiring work.

I am ending my summer on a happy note. I am grateful for each and every person I have met, been followed and unfollowed by on twitter. Thanks to all of you who continue to read my blog, friend me on Face Book, pay attention to my Get Glue goings on, forgive me when I acciedentally tweet under my name for my friend's candy company- then delete it and every other fault you tolerate with humor. Thank you for answering my daily questions on Face Book. By doing so and keeping up with the #chronicallyawesome on twitter, you are helping to raise awareness about Scleroderma, Sarcoidosis and what life is like living live with a chronic illness invisible or not. The care givers', friends' and family members' comments and input are just as valuable as those with the disease or condition. I have no words to stress that enough. We feel as if we are in this alone, but to experience the helplessness of watching a person you love in the fight of their life can be just as soul scarring as having the condition.

Thanks for reading and I look forward to hearing from you and more writing the remainder of 20011 and beyond.

What's New

Well I can't tell you EVERYTHING, but I will dish. I've made some changes in my life. I broke up with my boyfriend a few months ago. He's now my room mate in addtion to the other room mate. I moved my room right next to my son's and let my ex have the master bedroom. Why still live together? Well, it's a 3 year lease, he walks the dogs and is a very good friend. So it's the opposite of Three's Company, 2 men and a woman.

If you follow me on Twitter or Face Book, you have seen I recently took a trip to The Bay Area to my brother's. He and my sister are my two best friends, so we were one short but we had a great time. I brought my son's Skippy Jon Jones along on my road trip. While I was up north my laptop exploded and I'm still in the process of exorcising the demons from my desktop PC. So now I am typing on a teeny tiny Dell I'm in love with because it works.

I have been working with Jules of www.whatthejules.com We have been video blogging or "vlogging" together. We work well together and we are becoming great friends. Please visit her site to check out our Vlog-isodes. We have chemistry and we think we are quite funny.

I started a Box Wine Book club on face book. I am currently in therapy to work on growing my spine after years of playing a door mat. I thought, "what a great idea to share the books I'm reading". So, I posted a book I had started reading. The more I read the more it became about my walk with Jesus and less about my journey. Hey, I love Jesus. he was all about caring for the sick and all, but that has nothing to do with my spine regeneration. So, that's the last time I do a book club about a book I'm in the process of reading. I'm changing the book to Bossy Pants by Tina Fey. I've read it, it's wonderful and I can't wait to talk about it on Face Book with anyone who has or is reading it.

I have set two new goals. The first is to allow myself to be me. Yes, I'm just going to "be" for a while. I never quite got over my divorce as far as being on my own for a while so other than the occasional friend with benefits, no relationships for me. My second goal is to get into shape and have an ass almost as well sculpted as Shakira's. I say almost because let's face it, that woman has got a fine backside. It's good to have goals.

How will I do it you ask? Well the first goal will involve reading and learning about setting boundaries.For example, I used to expect the worst from people so that I would never be disappointed. It turns out that was a very bad idea. I'm going to expect the best. So far, I like this approach much better. I have a lot to learn about myself and life and I look forward to the personal growth, which I hope never stops. I will acheive my second goal by Yoga and Zumba. My motivation is to post some hot pictures of me- fully clothed of course. After looking through photo albums from the last 10 years, I have few very good pictures of just me. I though it would help motivate me if I felt like skipping Zumba class and so far, it's working.
I am also working with someone to rebuild my blog. Most of my energy will be spent putting that together so please forgive me for my fewer postings. I do appreciate everyone who takes time from their busy day to read my 2 cents. I am very grateful.

So, now that you are up to speed, please visit my Face Book page and answer my question of the day. Thanks again for reading and raising awareness of Scleroderma, Sarcoidosis, Autoimmune diseases and my quest for a backside like Shakira's.

Monkeys and Changes

You may have noticed the term #FlyingMonkeys if you follow me on twitter. It started with a conversation I was having and just didn't know how to respond. Having a chronic illness I constantly hear things like, "get well" or "I hope you feel better soon". They are well intended wishes and I know people wish these things for me and many others. When I tell someone I hope well for them and it doesn't happen, saying it again seems pointless because they are only words. So I thought, why not say words that will make someone smile. Humorous confusion is funny and laughter can lift someone's spirit. #FlyingMonkeys belongs to everyone and is meant as an expression of compassion or whatever you want it to be as long as it makes someone smile. Words can be meaningless just as much as they can be powerful. Why not use these powers for good?

My inner Freud would analyze & attach some sort of meaning or rules, but there are only two rules for #FlyingMonkeys. Allow me to simplify it in the spirit of Fight Club:

The first rule of #Flyingmonkeys is it be used only for good.
The second rule of #flyingmonkeys is follow the first rule.
See, easy like cake. (I have never understood the term "easy as pie". Cake is so much easier.)

About the changes... You may have seen me in a Vlog or two with @julianna12369 of www.whatthejules.com. We have combined our powers and have decided to use them for good. Together, with many more on twitter we are #chronicallyawesome. Do a search on twitter with #chronicallyawesome or #FlyingMonkeys and see the goings on, connect with others. It's not just about Autoimmune diseases, it's about life and its complications.

Now about me: I'm going to be making some major changes to my blog. My life is not just Scleroderma and Sarcoidosis. I can't even drink box wine anymore. My alcohol consumption has to be rare so I save it for special occasions. I have also created a Face Book page, Karen Vasquez so I can receive direct messages from anyone who has questions, concerns or complaints. It's also a place where I will post more photos etc because I will know who can view the page. I allow posting on it, but if I see a post trying to sell some crazy miracle cure I will unfriend and block you. I still have the blog page but there is no way to send me messages.

I will still be submitting articles to my Spoonie friends along with others.

Have you visited What the Jules? .com yet? Check out our Vlogs together.Go, NOW! My article about Social Security is already up- check it out. Jules also has some great articles from other bloggers as well as her own work to read as well. We Vlog together because it is geographically possible, it's fun, we have chemistry and let's face it- we are easy on the eyes. I will be posting my own Vlogs but they will be much shorter. I will expose you to my solo rantings in small bits. You are welcome.

Thanks for continuing to read my blog, reading my rantings on Twitter and following my adventures on Face Book. I have 20 years of chronically awesome adventures that I hope people can learn from and find helpful. #FlyingMonkeys to all and have a #ChronicallyAwesome Day!

Alice's Bucket List

Hello everyone!!! It's been a busy week and I have yet to post about the great pictures and fun we at the the 9th annual walk for the SclerodermaFoundation in Southern California.

I would like to recommend a blog, then if you have time please visit twitter, say something nice to Alice or just tweet #AliceBucketList
Check out her blog. Read about her story. One of her wishes is to trend on twitter.
http://alicepyne.blogspot.com/

Thanks for taking the time out of your busy day for Alice.
Cheers.

Scleroderma Walk This Sunday

Hello all! I have been busy with doctor's appointments all week so I will be posting some oldies,but goodies you might have missed. If you feel like it, share with friends to help raise awareness.

Thanks you for continuing to read this blog and showing your support by learning about Scleroderma. See you at the walk on sunday! Can't make it? Show your support with a donation.Every donation makes a difference, no matter how small.

Visit my fundraising page to see how you can help.

In 2007, My Remicade Infusion Cost $22,000.00

Yesterday, I had an infusion of Remicade that in 2007 cost $22,000. (I saw the cost on my insurance statement back in 2007.) Remicade with Methotrexate suppresses my immune system to keep Sarcoidosis and Scleroderma from progressing further. In other words, they keep my chronic potentially fatal diseases from killing me.

Today, I have three doctor's appointments three days of this week. I have tried to volunteer at a local non-profit and I felt like a flake because I am constantly sick or have doctor's appointments. I am one of the lucky ones. Most people have to work to keep their medical benefits so they can afford their medications and go in sick because if they loose their jobs and benefits, they will die without their meds. (I was going to revise that last sentence, but I’m kind of proud of that run-on)

Everyone should have the healthcare I do. I am a 100% Service Connected Veteran and I am lucky enough to qualify for Medicare. Medicare made it possible for the Doctors at the VA to refer me to a specialist when they had no idea how to treat my condition. I will elaborate more in another post, but I need to get to my doctor's appointment for some routine poking and prodding- and no, no one buys me dinner after. I wouldn't have time anyway, I have too many appointments.

If you haven't had the chance, please read and share this article I submitted to But You Don't Look Sick.com

I was informed thatyesterday was World Lupus Day, but other websites say it's May 12th. I'm so confused. I won't be confined to an easy chair and IV on the 12th as I was yesterday, so I may not be as tweetey, but I will do my best.

If you feel like it, do a search on Twitter for #WorldLupusDay. You may find some fun facts (or just facts depending on your sense of humor). Yes, I know this is a blog about Scleroderma and Sarcoidosis, but it's all autoimmune baby! Research and breakthroughs with other diseases open doors for better treatment and the possibility of a cure for all diseases. Together, we are stronger.
Thanks for reading and have a great day everyone.

The Only Thing I Love More Than Reading is Sharing

The only thing I love more than writing is reading.
The only thing I love more than reading is sharing what I've read.
This is by Shel Dougherty and I think her son will be okay.

How to Scar an 8 Year Old


Have a great laugh and a great day everyone!

PS: The Kama Sutra Sweet Almond Oil works well too.