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.

Hitting the Wall

Yesterday my Wii age was 23, today it's 31 which to me is more realistic. At 23 I had full use of my hands, was in great shape and was training with my brother to play softball in college. Today, I feel a little hint of narcissism just reporting my Wii age. But if I don't do something, I might stop.

I feel like I've hit a wall. Really, how long can the meds I take fend off the progression of two diseases? If I wreck my liver, I will never get to drink box wine again! THAT would be the real tragedy. I feel strong enough inside, but there's pain on the the outside that makes me feel like I have hit a wall. It makes me think of that character in the movie Run Fatboy Run. (spoiler alert) He comes to the last 300 feet of his marathon and a brick wall appears in front of him. The people around him disappear and it's just him and this wall. He tries to walk through it, but fails. Finally, what seems to be hours, but is really only minutes, he gets the strength to get past his wall in his mind. That's where I feel I am. I have to get past my wall. So I'm doing it with Wii Fit Plus and writing about it. Soon the Vicodin will no longer dull the pain and I have to train my mind to be ready.

Watch the trailer for Run Fatboy Run

Me and my Wii

I had my Remicade infusion yesterday. I'm still feeling tired, but I have to get myself motivated. I have been using my Wii Fit for 610 days. For a while I was using it regularly with Isagenix shakes (I don't do the full program)and got down to a size 4. Now I'm up to a size 8 and feeling tired. So now I'm recommitting to my Wii. I'm doing it publicly hoping that shame will get me on my Wii Fit Board when my motivation is down. Let's face it, growing up Catholic might make shame a great tool when used for good. So I maybe this would qualify as a quasi-experiment. (No control group and only one test subject disqualify this experiment from scientific scrutiny.)

I will be getting on the Wii board after I finish this post today. Sunday the last time I was on it, my Wii Fit age was 51- 51!!!! I have some work to do.

Have a great day everyone. I will keep you posted and update you how using Wii Fit has benefitted me. In the meantime, here are some links about Wii-Hab, Wii-habilitation and Wii Fit used by seniors.