Best 4th Ever

I defintely overscheduled myself. I had a great 4th of July weekend with my best friend from high school and her family. It was a blast. No crowds for fireworks and the best food.
Back to overscheduling myself... I ended up with some sort of flu on the way home and ended up in bed my 1st day back. I felt human again and thought I could be productive, but I was wrong. I didn't attempt to to yoga and I'm too beat to even spell check. So here's a video about a dog.
And keeping up with current events here's a classic from the Upright Citizen's Brigade. Enjoy
Hope everyone had a safe and sane 4th!

The Little Things

It's not big grand gestures; it's the little things that really make a difference in one's day.

I woke up late today because I took something to help me sleep last night. I felt rested. I should have because I woke up at 9:30. Already behind, I started on some bookkeeping work and realized the file I had been given was a complete (starts with cluster) expletive. I moved onto my next project which is a memoir. It was quite a story today. The file I refer to was given to me by my ex-husband and we are currently negotiating the terms of my family’s business. Writing about our split took its toll on me emotionally. I was mulling over how to blog about this without sounding bitter so I went to brush my teeth. I brush my teeth about 6 times a day. It's part OCD, part having Scleroderma. I have the partial facelift and nose job, compliments of Scleroderma. (Skin tightening of the face) It's not too bad, but I do need to brush my teeth after every meal to keep my gums healthy. Back to my story...

I was inside my head when I picked up my toothbrush and went for the toothpaste and saw two tubes. One near empty that would take a little work to get the toothpaste out and the brand new tube I bought the day before. When I went to bed last night, new tube was in its box. This morning, the brand new tube had been taken out of its box; the tamper-proof seal under the cap had been removed and was left lying next to the near empty tube. Now when I'm inside my head, it's hard to get my attention, but that brand new tube of toothpaste snapped me right out of it. It didn't just magically appear. Before he left for work this morning, my boyfriend- who was running late by the way, took the time to open the new toothpaste so I wouldn't have to struggle with the near empty tube. How thoughtful is that? That's not the first time- he does this stuff like this all the time. The first time he really got my attention was when we stayed at my dad's house. We got there around midnight after driving 8 hours, which my boyfriend drove the whole way. Exhausted, I thought he would crawl right into bed and fall asleep, but before he did, he grabbed extra blankets from the floor and stacked them under a pillow- for me. He remembered I needed to sleep elevated and wanted to make sure I did. I actually asked him what he was doing while he was doing it, I was so shocked.

So instead of my bitter mood, I get to share how lucky I am to have someone in my life that show me he cares with the little things that really matter.

I have to go brush my teeth again. I think I just gave myself a cavity writing that.

The Benefits of Being Your Own Best Advocate

Yesterday, I sat in on a teleconference presented by The Southern California Chapter of the Scleroderma Foundation. The teleseminar’s presenter, Karen Gottesman, is the author of "The First Year: Scleroderma: An Essential Guide for the Newly Diagnosed". The topic was "Being Your Own Best Advocate." She covered the types and subtypes of Scleroderma and provided a wealth of information on self-advocacy and how powerful that tool really is. This seminar will be available on the So Cal Chapter's website.

The seminar was geared for newly diagnosed patients. It was filled with information for "Newbies" and I felt was a great refresher for "Old Timers" like me, who found things out the hard way.

The full time job of managing any chronic illness as a patient can be overwhelming stressful, repetitive, frustrating... I could go on, but I think my profanity filter might malfunction, so I'll end here. Karen talks about the benefits of managing illness as your own advocate and calls it (paraphrase) a Journey, with the ultimate goal of co-existing with the disease. Scleroderma is different with everyone and can take one person in many different directions. Karen really drove the point home by presenting great ways a patient can be proactive about his/her own care and how that advocacy can restore some control. That's potentially comforting for control freaks as well as the easygoing.

One of the topics that got my attention was the "Common Sense Things” that can be overlooked. (Of course I found a way to make this about me. Put your hands on the screen and feel the egocentrism!) Through the years, I have overlooked some of these common sense things Karen mentions, such as scheduling my appointments, getting labs done and renewing prescriptions before I am faced with an empty pill bottle on the Sunday morning of a holiday weekend.(Oh yeah, I've done it.) These seem like common sense items, but let me give you an example. When I have a long streak of feeling great, surrounded by healthy people who don't have to manage the workload related to maintaining their health, I assume: I feel better, so I must be well. I do grow tired of the doctor's appointments, labs, infusions, invasive tests, procedures and on and on. Sitting in on that seminar yesterday for Newbies gave me a much needed boost and reminder to stay on top of things. It brought to my attention those red flags I ignore when feeling well. I am glad I had the opportunity to be reminded of the benefits of staying on my wellness path throughout my journey with Scleroderma.

I would love to read comments from any Newbies or Old Timers out there who had a chance to attend the seminar, or have read Karen’s book. To find out how to get a copy of Karen Gottesman’s Teleseminar, check out the So Cal Chapter’s website. Become a member and get updates and newsletters about the latest in Scleroderma treatment, research, advocacy and to find a support group near you.

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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.