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.

Raynaud's : What Works for Me.

Exercise. It’s good for all blood vessels. Yoga and breathing exercises help me cope with pain. Stress is a HUGE trigger for Raynaud's for me. Yoga has helped me cope. I started with Kundalini Yoga in 2005. I just started studying Anusara yoga one on one with a yogi at Yoga Living Studio here in Temecula. It's helping a great deal. Remember, exercise is always a good idea.

Eating well is also a good idea, but beware of anyone who tries to sell you herbs specifically for symptom or diseases. For example, cayenne pepper is excellent for circulation, but if you have any type of Reflux, it will damage your esophagus. I mention the alternative medicine because if you seek out a yogi or yoga instructor focus on the exercise. Chanting and movement doesn't cause exacerbation of symptoms.

In 1994, My Raynaud's was very aggressive. I was in college, had to change my major, break up with my boyfriend who I moved to Wisconsin with from California. Some of us have stressors we're not even aware of. I was in denial, which was the stressor I ignored and found some poor ways of dealing with it.

Raynaud's is a response by the sympathetic nervous system- fight or flight. It is an unconscious reaction to a threat. Now that we're no longer hunter/gatherers threatened by predators our stress has changed, but the fight or flight response is still present. How will we feed ourselves? Take care of our offspring? Deal with our environment? (i.e. cold) Take care of ourselves?

As someone who experienced Raynaud’s at a young age, I would suggest to anyone with Raynaud's to find ways to cope with stress such as yoga, meditation & exercise. Don't hunt for stressors if you don't know what they are. That just creates more stress. Focus on the coping so that you are prepared for whatever life hands you. Something as simple as a manicure or pedicure once a week is a stress reliever. A massage once a month is great. My biggest regret is not doing yoga in my 20's. I discovered it in my 30's. Find a studio near you. Keep working with your doctors. I have some posts about what happened to me on my blog. I don't want to scare anyone so if you read them, please keep in mind this was almost 20 yrs ago, before Viagra and no one believed me when I reported my onset of symptom. Back then my doctors wrote it off as "hysterical female syndrome".

Here is the website to the Yoga Studio I go to called Living Yoga Andrea; the owner is also an excellent source of information as well. You may be able to find a place similar to it in your area if Temecual is too far.

One more thing:
My mom used to massage my hands gently, when she could and when I lived with her. Just throwing that out there. If I was sitting around watching TV, I'd take a wet towel, put it in the microwave until warm, coat my hands with lotion (I now use Kama Sutra Almond oil- works better than anything I've tried and smells great) cover my lotioned or oiled hands with towel and relax while watching TV or hanging out. Then after the towel cooled, my mom would gently massage my fingers, great for my circulation and my mind. A partner, roomate or a good friend also make great massage buddies. It's one way friends and family can help when they feel helpless.

Kama Sutra Almond Oil

Parenting from the Couch by Christina Stevens: A Must Read.

I haven't given up on writing. I've been doing research and I have been coming across some great posts that put the chronic illness experience into perspective. This is another one of those articles.
Parenting from the Couch