Patient Advocacy for the Newly Diagnosed

Reminder- Join the So Cal Scleroderma Foundation Chapter for a special teleseminar Monday, June 21st at 11:00am
Topic: Patient Advocacy for the Newly Diagnosed(all patients and their families and friends welcome) Call 1.877.216.1555 Enter the passcode: 981555

Visit the Scleroderma Foundation's website- www.scleroderma.org
Looking for books on Scleroderma, check out the store The Scleroderma Foundation's online store or use the link below and shop Amazon.

Wii Fit and Meditation

Another glamorous Friday night. I spent an hour and a half doing Wii Fit Plus. I felt great afterward, but my balance exercises were challenged. I found my earbuds for my Ipod and used them instead of my stereo. It was very distracting during the balancing exercises. I never realized how much mental effort it takes (at least for me) to do those balance exercises.

What does this have to do with meditation? I realized I focus myself during these balance exercises. The balance exercises are a place where I can clear my head, not unlike meditation. So then I decided to challenge myself to my balance exercises well while listening to my Ipod with my earbuds on. I may find this counter productive to clearing my head, but I just have to find out.

What made me think simple tasks unknowingly lead me to meditation? There is an article in the May 2007 Shambala Sun featuring Alice Walker, the author of the book, "The Color Purple". Ms. Walker talks about how sweeping is a great meditation act for her and how simple acts can provoke meditation. The Wii Fit balance exercises are my meditation tasks. I'll elaborate more in another post. I need to get ready for an old school concert with some old friends and I need to make time to fit in some balance exercises.
Have a great Saturday everone!

I found the article! Check it out.
....A Conversation With Alice Walker

Meditation

Doing some research on meditation. I have been teaching my son for years and I have witnessed him experience relief when he becomes overwhelmed. What sparked my recent interest in more research was my son's daycamp teacher mentioned to me she would be using meditation labor when she gave birth. Well, I just had to check this out because I am all about the painkillers. I use meditaion regularly to calm anxiety, especially when in pain. Painkillers have long term effects when used daily and can loose their ability to work the more they are used. It seems logical to have an alternative to drugs. Back to meditation, a counslor I worked with in a group used a book by Eknath Easwaran and I found it very helpful. It's called "The Mantram Handbook:A Practical Guide to Choosing Your Mantram and Calming Your Mind." I found it very helpful and was lucky enough to be part of a therapy group that used it to help with pain and stress management. Another great article I just read was in June's Yoga Journal , called, "How Meditation Trains Your Brain" I had trouble finding the actual article online, but if you suscribe or see a copy of the June 2010 issue, it's worth reading.
I spent most of the day chasing my tail trying to upload some software. I'm using my air card because my internet is down. It was my Uber expensive internet/cable/phone bill or daycare- I picked the daycare. I'm looking at it as an experiment. I have to go 2 weeks without conventional TV. Will I survive? Stay tuned.

Yes Douchebag, It Is A Real Job

Has anyone ever told you the following?

"You need to stop pretending you have a job. Don't send him {my son} to daycare and tell people you have a job just because you can't take care of your own kid." This was said to me at the Scleroderma walk in private by someone I will never invite to participate in anything ever again, unless mandated by court.

But, I will use this blog to respond to his statement, only because I was too dumbfounded at the time.

I do have a real job. For years I believed it wasn't real and I let someone tell me it wasn't. It's not a conventional 9 to 5. It's a 24/7 job and unless you take it seriously you can get fired. This job is managing two serious chronic illnesses and having a fulfilling and active life as a person and a parent. I'm not special. We all have a 24/7 job to take care of our health. Some just have a lighter workload than others.

Many who have one or more chronic illnesses or any type of debilitating condition know this job well. I can't speak for others, but for me at times it did seem like a fake job. No one else had a "workload" like mine. Oh and there's that denial that works so well for me. It does help me hurdle obstacles in my path, but it can distract me from paying attention to my job.

I'm still digesting that person's statement. I'm working on a memoir and I will be including it or I may decide to use this person as a fictional character in a novel. For now, I'm just sitting with it. I posted this because if there's anyone out there who has someone in your life and believes that your job is a fake one, it's not. It's as real as the day is long.

Learn to be Your Own Best Advocate.

The Scleroderma Foundation's Southern California Chapter is offering a teleconference for newly diagnosed scleroderma patients. All Patients and families are welcome.
When: Monday, June 21 at 11:00am

Topic: Patient Advocacy for the Newly Diagnosed

Call 1.877.216.1555
Enter the passcode: 981555

Scleroderma is overwhelming as it is. Learn from the source how to become your own best advocate.

The Spoon Theory written by Christine Miserandino

This is by far the best explaination of living with a chronic illness I have read. This was written by someone with Lupus. It doesn't matter if you have Lupus, Scleroderma, Sarcoidosis, Diabetes or anything that slows you down, we can all learn something from each other. What might seem like a simple tip to someone, mean a world of access to someone else.

The Spoon Theory written by Christine Miserandino

Daycare. Finally

I finally signed up my six year-old son for 5 day care after school and summer camp. I kept putting it off because I would internalize criticisms from my ex. I don't blame him. I'm good at taking things, mulling them over and making them more important than they are. Like many, I am my toughest critic.

I had the day to myself and I feel like I am settling into the house I moved into in March. I spent the day putting things away. Shredding old bank documents that needed it. So much so, I overheated my shredder. Bank statements from 2006, two boxes of blank checks and a stack of old bills. My aha moment came when I realized I needed to be in Loma Linda then back in Temecula before the end of the day on Tuesday. That was 96 miles round trip. I automatically plaued the schedule of my day through my mind and realized I could never finish anything by 11:00. Then I realized my son started after school day camp and I had the whole day to finish my errands. I could actually feel myself standing up straighter. I had stopped running in circles.