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Monday, August 31, 2009

Part 2: So What Happened When Yesterday Was Tomorrow?

From Today to Yesterday, Tomorrow and FantasyImage by sonson via Flickr


It's been crazy in Los Angeles for the past several days. I've torn myself away from the television and the continuing updates about the Station fire burning in the Angeles National Forest to complete the last entry for my daily blogs in the month of August on tomorrow. And, in case you were wondering, I am hoping that tomorrow I wake up and the fire has spared all the homes in its path as well as the observatory and all the transmission towers on top of Mt. Wilson.

So back to the task at hand:

Where Will I Find Myself Tomorrow? - 8/15/09

I had an ah-ha moment after writing this post. I realized that using self-help strategies to manage my chronic pain and chronic fatigue is self-discipline in action. I also realized that I am currently employing a lot of self-discipline on a daily basis. Perhaps my struggle to add more tasks right now is more about being taxed and not having extra self-discipline for something new.

Tomorrow's Forecast: Fog On Coolidge Avenue? - 8/16/09

I definitely think this was a sign that I was doing too much. My body is highly reactive and responds to being outside the energy envelope by increasing symptoms: physical, cognitive or both.

I Need Tomorrow to Recover From The Weekend... - 8/17/09

Did I just admit that I don't enjoy the weekends as much anymore?!?!? Sadly, it is true.

The Energy of the Future Comes to My Rooftop Tomorrow - 8/18/09

and

The Energy of the Future Gets Switched On After an Inspection Tomorrow - 8/20/09

I am happy to report that we finally passed the Building and Safety inspection on August 25th. Verengo came out again today, August 31, to put the final touches on the system. I am happy to report that we are good to go. Now we just have to wait for the official approval from LADWP to switch our system on. (In the meantime, with the fires and possible energy interruptions and conservation alerts, we decided to "test" the system over the next few days to lessen our impact on the grid.)

God Laughs and I Change My Plans for Tomorrow - 8/19/09

In retrospect, it seems I really stepped out of my energy envelope more than usual in August. I headed off a flare-up by adding extra rest and downtime the next day after I read the warning signs. I guess if I couldn't prevent the problem, reacting quickly to prevent it from getting worse is a good back up skill to possess.

I'm Taking Many Small Steps Towards Tomorrow - 8/21/09

I really like this quote and I behooves me to remember it. And how did those Chinese ancestors know that, when you have chronic illness like I do, trying to get a lot done leads to flare-ups and setbacks?:
“It is better to take many small steps in the right direction than to make a great leap forward only to stumble backward.”

~ Old Chinese Proverb

Tomorrow is My Birthday and I Have Just One Wish - 8/22/09

and

Happy, Happy Birthday to Me Today ... and Looking Forward to More Presents Tomorrow - 8/23/09

Through my birthday wish, powered by Causes on Facebook, I raised $70 for The Gerald E. Keerbs Memorial Fund. The good news is I don't mind belated birthday greetings, so you still have time to fulfill my birthday wish by making your own contribution by the end of the month of August (hint, hint.)

100 Words on Tomorrow - 8/24/09

I relish the wisdom of the universe. Since I wrote this post, there have been seven more tomorrows. I am looking forward to many more...

Chronic Illness Will Be a Part of All My Tomorrows - 8/25/09

I reached acceptance with this post.

Perhaps Tomorrow I'll Think About the Long-Term - 8/26/09

Then I realized that I have been ignoring an important part of my life: my long-term dreams, hopes and plans. I found this inspiring quote after I wrote this post:
"Long-range goals keep you from being frustrated by short-term failures."
- James Cash Penney

What will motivate me to get out of bed tomorrow morning? - 8/27/09

I had some fun composing this "top ten" list of motivators. (Numbers one and two remain steadily at the top.)

What? It's Friday? I thought Friday was tomorrow! - 8/28/09

Didn't this month just fly right by? How can it be September tomorrow?

And finally...

30 Things About My Invisible Illness You May Not Know Today, But Will Remember Tomorrow - 8/29/09

Wish me luck! By completing this meme I was entered into a contest to win a fabulous prize from Invisible Illness Week. Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com.

Goodbye August. I'll miss your sweet promises of another summer day tomorrow. See you again next year...

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Sunday, August 30, 2009

So What Happened When Yesterday Was Tomorrow?

Adding machineImage by oskay via Flickr


It is almost the end of August and my month of blogging about tomorrow is coming to an end. Blogging about tomorrow has been an interesting experiment, but I feel the need to review the month and let you know what happened when yesterday was tomorrow. In this post I am reviewing August 1 through 14; tomorrow I'll review August 15 through 29.

So let's step back in time and see what happened:

Planning for Tomorrow - 8/2/09

After a day of pondering, I have decided that a daily priority list is too much for me right now. So instead, I changed this to a fibro-friendly weekly priority list.


Tomorrow I Will See What Has Been Done - 8/3/09

Since I wrote this post, I've been focusing on my accomplishments rather than being hung up on my shortcomings. I'm not always successful, but when I am, I've found that I feel better about myself when I see what I have done.


Tomorrow I See a New Doctor... - 8/4/09

Unfortunately the rheumatologist treated the appointment as a consultation only. He sent me right back to my referring neurologist for follow-up. That's O.K. because I really don't want to add another doctor to my team. I really, really like my neurologist and she is O.K. with managing my pain/fibro/TOS care. Win-win for me.


Tomorrow I Am Going to Pause - 8/5/09

Robert Burns said, "
The best laid plans of mice and men oft go awry." What can I say, I am not immune; my plans do not always come through or work out. Like my plan to figure out how to motivate myself to get housework and chores done ... well, I am still working on it. But I have discovered that taking a forced time out every once in a while isn't such a bad thing.

Tomorrow is Fulfillment Friday! - 8/6/09

I love Fulfillment Fridays! They really help me focus on what has been done. In retrospect, it was a very good idea to reinstate Fulfillment Fridays. I suggest you try them, too.

Fulfillment Today, Fuel for Tomorrow - 8/7/09

I believe that focusing on success creates momentum for a person to continue on and achieve even more success. Success is a solid foundation you can build on. I mean, how people can build their lives up by focusing on their failures? While failures can teach us lessons and point us in a better direction for next time, it the successes that help us build the life we want to live. Hopefully, there are more successes to build with than failures to learn from at the end of each week."

I have been reminding myself of this concept almost daily, ever since I wrote it down. And the best part: sharing this advice with a close friend and helping to motivate her to focus and build on her successes instead of getting mire in her failures. It was advice she needed and was able to take to heart.

Setting My Priorities for Another Week of Tomorrows - 8/8/09

Of the six items I set out to accomplish for the week, I was able to complete five, which is good for me. As I wrote:
"Being chronically ill means I need to be flexible and understanding of my limits. It means living with the unexpected, being O.K. with a sudden change in plans and learning to go with the flow. My best laid plans often go unexecuted, especially when I have a flare-up in my symptoms."

Will I Pay Tomorrow for What I Have Done Today? - 8/9/09


I did not pay the next day. I caught a break that day.


Tomorrow I Just Might Achieve My Dream - 8/11/09


While not all my attempts to pursue my dream of writing were fruitful, I did enjoy some success. I was featured in three blog carnivals this month:
  1. Oh My Aches and Pains! featured in the Patients for a Moment blog carnival
  2. Oh My Aches and Pains! featured in Grand Rounds Blog Carnival
  3. Oh My Aches and Pains! featured in the Fighting Fatigue Blog Carnival
I have an offer to write an article for the Fighting Fatigue website and I am working on a submission for the next edition of the book: Voices of Courage (A Collection of Short Stories and Poems that Cancer Couldn't Beat).

I Don't Want to Push Today, Crash Tomorrow, Anymore - 8/12/09


This was the post featured in the Grand Rounds Blog Carnival. Writing this post was a great reminder that, in my life with chronic illness, good days are dangerous.


Tomorrow I Should Open a Saving Account - 8/13/09

"The unexpended energy is a gift of healing you are giving to your body."
Opening an energy savings account is a good idea. I need to work on embracing this concept and I am contemplating how to do this.

Fulfillment Friday, a.k.a. The Results of Tomorrows Past - 8/14/09

Another post and another great reminder of the things I could do despite living with chronic illness. You see, in my own time and in my own way, this Chronic Babes can get things done!
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Saturday, August 29, 2009

30 Things About My Invisible Illness You May Not Know Today, But Will Remember Tomorrow

keymi oeil place gaillard tramwayImage by coincoyote via Flickr


1. The illnesses I live with are: leukemia (cancer) survivor (1988), Hepatitis C (1988), Type 2 diabetes (1999), chronic myofascial pain (2004), mild to moderate degenerative changes in my neck (2004) and low back (2005), fibromyalgia (2005), dysautonomia (2007), chronic fatigue syndrome (2008), thoracic outlet syndrome (2009).
2. I was diagnosed with them in the year:
see above.
3. But I had symptoms since:
Leukemia: probably about 3 months before I was diagnosed. Diabetes: probably a year or so before diagnosis. Dysautonomia: for at least ten years before I was diagnosed. Everything since 2004: started in October 2004.
4. The biggest adjustment I’ve had to make is:
to learn how to live my best life despite chronic illnesses.
5. Most people assume:
that since I am disabled and spend most of my time at home, I am living a life of leisure. NOT!
6. The hardest part about mornings are:
trying to wake up when I feel like I never actually fell asleep.
7. My favorite medical TV show is:
House.
8. A gadget (or two) I couldn’t live without:
my shower seat and my scooter.
9. The hardest part about nights are:
not being able to fall asleep until early in the morning.
10. Each day I take
2 pills, 2 injections, 1 liquid medication and & 5 vitamins.
11. Regarding alternative treatments I:
have tried many, often paying out of pocket, and have found little relief.
12. If I had to choose between an invisible illness or visible I would choose: the devil I know, invisible illness.
13. Regarding working and career: I miss my career as a clinical social worker, but right now social work, or any other work, are not possible for me right now due to severe symptoms of chronic pain and chronic fatigue.
14. People would be surprised to know: that socializing with my friends and family is more difficult for me now. I still yearn for social contact and enjoy being with other people, but physically and cognitively socializing has become exhausting and uncomfortable.
15. The hardest thing to accept about my new reality has been: that good days are dangerous and so is trying to keep up with other people!
16. Something I never thought I could do with my illness that I did was: gardening---thanks to fibro-friendly container gardening!
17. The commercials about my illness: give the impression that there are "treatments" and a possible "cure" for everyone with fibromyalgia. I have tried these treatment and they HAVE NOT worked for me.
18. Something I really miss doing since I was diagnosed is: being able to anything I want to do, anytime I want to do it and for however how long I want to engage in the activity.
19. It was really hard to have to give up: bowling in leagues with my hubby and friends.
20. A new hobby I have taken up since my diagnosis is: Knifty Knitting
.
21. If I could have one day of feeling normal again I would: cry.
22. My illness has taught me: the art of patience, the skill of pacing, the importance of self-discipline and the benefit of routine.
23. Want to know a secret? One thing people say that gets under my skin is: Are you feeling better? OR Are you doing better?
24. But I love it when people: offer to drive, help me run errands, don't mind coming to my house and understand when I need to go home and rest.
25. My favorite motto, scripture, quote that gets me through tough times is: from Randy Pausch:

"But remember, the brick walls are there for a reason. The brick walls are not there to keep us out. The brick walls are there to give us a chance to show how badly we want something. Because the brick walls are there to stop the people who don’t want it badly enough. They’re there to stop the other people."
26. When someone is diagnosed I’d like to tell them:
“There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something better tomorrow.”
~Orison Swett Marden
27. Something that has surprised me about living with an illness is:
the amount of time I spend alone.
28. The nicest thing someone did for me when I wasn’t feeling well was:
allow me to talk about how I was feeling and cry.
29. I’m involved with Invisible Illness Week because:
I can't be the patient blogger and advocate I want to be, for myself and other people living with chronic invisible illnesses, if I don't stand up and tell my story to the blogosphere!
30. The fact that are you reading this list makes me feel: visible, recognized, accepted, hopeful, empowered, honored and connected to other people
.


Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com


ADDENDUM
: Invisible Illness Week is being celebrated once again from September 13 to 19, 2010.



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Friday, August 28, 2009

What? It's Friday? I thought Friday was tomorrow!

slightly stripeyImage by greenhem via Flickr


Sometimes the days just fly by, and all of a sudden Fulfillment Friday comes right up on me!

Truth be told, from the moment I realized it was Friday, I started my Fulfillment Friday thinking to myself, "Good grief! What have I done all week? I can't remember anything! I feel like I have done nothing!"

Then I sat and thought. I checked my calendar. I turned and asked my husband, "What did I do all week?" I stared at my computer screen.

Somehow, this post started coming together until I beheld this whole list of accomplishments.

This week I:

  1. Scheduled my follow-up appointment with Meg at the Workwell Foundation. I am eager to discuss my heart rate and activity logs with her to find out what works for me in terms of "exercise" since I've experienced so many problems in this area.
  2. Saw Dr. Anne Peters, my endocrinologist, who is pleased with my control of my type 2 diabetes and congratulated me on losing three pounds. My efforts to lose weight have allowed me to stop taking one of my medications, leaving me with Byetta injections as my primary management tool.
  3. Harvested green beans, tomatoes, green bell peppers, radishes and squash from my container garden. I have so many green beans that I need to figure out how to blanch and freeze the extras.
  4. Learned about SEO---search engine optimization---and tweaked my blog to make it more search engine friendly.
  5. Submitted my blog to Blogged, Technorati and BlogSurfer.us. Signed up for Digg and Delicious accounts so I can submit my blog posts there too.
  6. Made new friends on Facebook with some of my fellow bloggers and persons who have commented on my blog.
  7. Delighted in being chosen to be part of the Fighting Fatigue CFS & Fibromyalgia Blog Carnival #13 at FightingFatigue.org.
  8. Put the due dates for the blog carnivals I have participated in on my calendar so I can strive to be a regular contributor.
  9. Cleared my schedule so when I am ready in the next few days I can try the new medication Savella for my fibromyalgia symptoms.
  10. Celebrated my birthday (and my hubby's too) and raised $70 on Facebook through My Birthday Wish created through Causes for the The Gerald E. Keerbs Memorial Fund. My goal is to raise $1,000.00 by December 31, 2009, my Dad's birthday, for the Alzheimer's Association.
It's good to remind myself that I do get things accomplished each and every week. Now I am glad that tomorrow isn't Friday after all.
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Thursday, August 27, 2009

What will motivate me to get out of bed tomorrow morning?

Just Out of BedImage by yvestown via Flickr


From the mundane to the profound, here are ten motivators that will help me get out of bed tomorrow morning:

  1. My need to go potty.
  2. My dogs and their need to potty.
  3. The chance to have some fun engaging in my pastimes and hobbies.
  4. The prospect of my daily phone call visits with my sister Cyndie.
  5. The anticipation of my hubby Robert coming home from work and our shared evenings together.
  6. My intention to keep my garden green and growing.
  7. The pleasure that writing a daily blog post brings to my life.
  8. The hope that tomorrow will be a better day in terms of my chronic illness symptoms.
  9. My commitment to my mission to continue to learn how to live my best life despite chronic illness.
  10. My quest to find my new purpose in life, now that chronic illness is part of all my tomorrows.

Today's post is inspired by a meme courtesy of the writing prompt generator at Day Dreaming on Paper.
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Wednesday, August 26, 2009

Perhaps Tomorrow I'll Think About the Long-Term

Go Towards The GlowImage by Fozzeee via Flickr

Most days, I try to stay focused on what is right in front of me. Each day challenges me to figure out how to make the best of the limited energy I posses. For some time now, I've concentrated on daily, weekly or short-term goals, mostly because I remained uncertain about my chronic illnesses and their impact on my life.

I have been living this short-term kind of life for almost five years now. On many levels, living this kind of life works for me. But I am feeling like something is missing ... and that something is long-term hopes, dreams and plans.

In my life before I became disabled, I set immediate, short-term and long-term targets and goals. I asked myself where I wanted to be in five years, ten years, twenty years. I listened to my inner self and let it guide me to the people, places and things I was meant to encounter.
I dreamed about my future. I made plans.

On the one hand, among many other things, my inner self lead me to my career in social work, my house and my husband. On the other hand, health problems post cancer treatment, adding up in number and burden as the years have gone by, have dogged me along the way as well. What helped previously was using a combination of flexibility, ingenuity and persistence in the face of health problems to make my plans come to fruition. I achieved most of my targets and goals, not all, but many.

Now with managing multiple chronic illnesses a big part of all my tomorrows
, I wonder if my inner self can still lead me to the people, places and things I am meant to experience. I wonder if the hopes, dreams and plans I abandoned in 2004 can be transformed into fibro-friendly hopes, dreams and plans. It seems ironic that some of those old hopes, dreams and plans have increased in their importance to me just as my rational mind has determined that they might be extremely hard to impossible to attain.

Just as I feel myself slipping down the slope of despair, I remember this quote from Randy Pausch:
"But remember, the brick walls are there for a reason. The brick walls are not there to keep us out. The brick walls are there to give us a chance to show how badly we want something. Because the brick walls are there to stop the people who don’t want it badly enough. They’re there to stop the other people."
You'll have to excuse me now. I need to figure out how to climb over, walk around, tunnel under or simply smash through my brick walls.

Yes, perhaps tomorrow is the perfect day to start thinking once again about the long-term.


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Tuesday, August 25, 2009

Chronic Illness Will Be a Part of All My Tomorrows

The Sky in the SandImage by ecstaticist via Flickr



Back at the beginning of 2008, I realized that I had lived over three years with illnesses that were not getting any "better." At that point in time, I chose to accept that I had chronic illnesses and disabilities that would be part of my life indefinitely. I chose to reframe the way I viewed my health problems: instead of seeing them as something that could be "cured" and "fixed," I embraced the notion that they needed to be managed. I took responsibility and determined that my chronic illnesses need to be managed not by a doctor, but by me. I decided to accept that, at least for the foreseeable future, living with chronic illness would be a part of all my tomorrows.

Thus began my quest to obtain quality of life, the good, the bad and the ridiculous. Or, as I have come to see it, my mission to live my best life despite chronic illness. I began my mission by reintroduce fun, enjoyment and interesting pursuits back into my life. While there were definitely a few things I could no longer do, I found that some of my old pastimes just needed to be revamped to become fibro-friendly. I also discovered new pursuits that nicely filled the gaps left by those old pastimes I sadly needed to leave behind.

I continue to be amazed how making this switch has changed my whole outlook and attitude about my life with chronic illness. In short, I think I've changed my life for the better and other people seem to notice it. "Are you feeling better?" is the question I often am asked. I know most people want a yes or no response, but "yes" or "no" don't really answer this question. The bottom line is I still have a significant amount of chronic pain and chronic fatigue every day. The bottom line is that I am still disabled. But what I think I have accomplished is to offset some of my chronic pain and chronic fatigue with joy-inducing,
life-sustaining and stress-reducing activities. The net result is a more balanced life and a person who looks a bit less in pain, a little bit less tired and a little bit more happy, a little bit more content on the outside.

I truly enjoy my accomplishments, however lately I'm beginning to feel like I need to add another component onto what I have already achieved. I feel it is time and I am ready to build upon my successes. After all, life is all about growing and changing. It's time to add more things set aside and forgotten back into my life and I'll discuss this further in my blog post tomorrow.


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Oh My Aches and Pains! featured in the Fighting Fatigue Blog Carnival


I am so honored to be featured as one of the bloggers in the Fighting Fatigue CFS & Fibromyalgia Blog Carnival #13 at FightingFatigue.org.

Check me out:
Selena presents I Don’t Want to Push Today, Crash Tomorrow, Anymore posted at Oh My Aches and Pains!

Thank you for including me Sandi Robinson and Fighting Fatigue!


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Monday, August 24, 2009

100 Words on Tomorrow

The Eagle Nebula (M16): Peering Into the Pilla...Image by Smithsonian Institution via Flickr

"Live for today, don't worry about tomorrow," the wise men say, "For tomorrow may never come."

Tomorrow may never come? The universe disagrees. The universe, infinite and expanding, full of stars and planets, has existed for 15 billion years. The universe has seen a never-ending procession of tomorrows.

As the universe moves forward, tomorrow is always on the horizon, a constant beacon on this journey through time. Tomorrow inspires infinite possibilities and gives birth to so many hopes and dreams! Isn’t part of living life in the present about planting seeds that, one day, will sprout, grow and bloom tomorrow?


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Sunday, August 23, 2009

Happy, Happy Birthday to Me Today ... and Looking Forward to More Presents Tomorrow

Square OneImage by E_TAVARES via Flickr


I enjoyed a great birthday weekend and discovered that 29 is not so bad (wink, wink.) I relished a couple meals out at some of my favorite restaurants, received some wonderful birthday greetings and accepted a couple of thoughtful presents too. Today was a good day.

I am especially grateful to Terri, Julie, Shannon and Cynthia who made my birthday wish come true by making donations to The Gerald E. Keerbs Memorial Fund on Facebook. Thank you ladies! The good news for everyone else: I don't mind belated birthday greetings, so you still have time to fulfill my birthday wish by making your own contribution by the end of the month of August (hint, hint.)

Finally, I want to end my birthday with this wonderful thought it mind:

“Yesterday's the past, tomorrow's the future, but today is a gift. That's why it's called the present.”

~ Bill Keane, creator of the comic strip Family Circus

So Happy Birthday to me and here's to more presents each and every tomorrow!

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Saturday, August 22, 2009

Tomorrow is My Birthday and I Have Just One Wish

Birthday Cake CupcakeImage by clevercupcakes via Flickr


I never tell my age. Why should I? I believe that a woman who will tell her age will tell everything.
~Mary Kay Ash
Yes, it is true, tomorrow is my birthday. In lieu of the presents and cards from my family and friends, I am asking them to make donations to The Gerald E. Keerbs Memorial Fund.

I'm inviting you to celebrate my birthday with me too.


On Father's Day 2009, I decided to raise $1,000 for the Alzheimer's Association through the tribute I create for my Dad at the Alzheimer's Association website. Click here to visit my tribute: The Gerald E. Keerbs Memorial Fund. I would welcome your help in reaching this goal.

I know that times are tough. Unfortunately, tough times mean donations to charity decline as well. More than ever, your favorite charity needs your help right now. In these tough times, please consider making a "micro donation" of $1, $5 or $10---it's the new way to give and show that you care!

You can read my post about my hero, my Dad, by clicking here.


I'll be writing about my hopes and intentions for the future tomorrow.

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Friday, August 21, 2009

I'm Taking Many Small Steps Towards Tomorrow

Steps through the agesImage by Swamibu via Flickr

“It is better to take many small steps in the right direction than to make a great leap forward only to stumble backward.”

~ Old Chinese Proverb quotes


Today is Fulfillment Friday, my favorite day of the week. As the quote above suggests, today is about counting all the small steps I made this week toward my targets and goals. How did those Chinese ancestors know that, when you have chronic illness like I do, trying to get a lot done leads to flare-ups and setbacks? Maybe they are the ones I should credit with writing the Golden Rule of Chronic Illness: If I push, I will pay. If I pace, I can play.

Here are all the small steps I was able to take this past week:
  1. Sent my activity and heart rate logs to Meg at The Workwell Foundation. Next step is to set up my follow-up consultation with her to discuss what reasonable and appropriate exercise looks like for me. You can look forward to a more detailed post about The Workwell Foundation and their philosophy for helping persons living with Fibromyalgia and Chronic Fatigue Syndrome next week.
  2. Met with my neurologist and discussed trying Savella for my fibromyalgia. I'm nervous about side-effects, but I think I am going to give it a try. Look for a post about starting Savella in the coming week or so ... I need to schedule some downtime (i.e., no appointment or commitments outside the home) before I get started.
  3. My self-help skills paid off when, on Wednesday, I was able to recognize the signs that I was overdoing it and headed for a flare-up. I took action by scheduling extra rest and rescheduling my plans for Friday.
  4. I pondered some more about the art of self-discipline and made the connection that employing self-help techniques to manage my fibromyalgia and chronic fatigue symptoms is all about applying self-discipline to my life.
  5. I recognized that the weekends are disrupting my routine. I am also wondering if this contributed to the fibro-fog I experienced earlier in the week. My next step: observe what happens this weekend, look for a pattern and explore what I can do minimize the impact of going off schedule during the weekend.
  6. Discovered that I am mentioned at the web site of the Worldwide Association for ME/CFS Awareness and Research under Resources: ME/CFS Bloggers. Cool!
  7. Wrote a post to my blog every day.
  8. My blog post Tomorrow I See a New Doctor was featured in the Grand Rounds Blog Carnival at InvisibleIllnessWeek.com.
  9. I applied to be part of another blog carnival for this upcoming week. It will be published on Monday, August 24, so stay tuned (finger-crossed.)
  10. I also networked with the Blood Cancer Examiner and learned about freelance writing positions at the Examiner.com web site. I applied to become a Los Angeles examiner, although after the tips I received from Cathy, I think I may be reapplying.
I think my mantra for tomorrow and the next week will be, "Small steps, small steps."

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Thursday, August 20, 2009

The Energy of the Future Gets Switched On After an Inspection Tomorrow


The future is here: we have solar panels! The installation on Wednesday went smoothly and the subcontractor, Verenego Solar, completed the job in one day, from 8:30 am to 7:00 PM. Tomorrow L.A. City inspects the work and gives it a thumbs up or thumbs down. Until we pass the inspection, we must wait to turn the system on and start reaping the benefits of the sun courtesy of our solar system lease with SunRun.

My neighbor across the street came over today and inquired about the solar panels. She said she missed the tree that used to be in our front yard. We had a huge melaleuca tree in the front yard, pictured at the top of this post. I miss the tree too, but have plans to replace it with something much smaller, something that won't shade the solar panels. I'm thinking maybe a semi-dwarf avocado or other fruit tree.

We've entered new territory here and I am anxious to see how this is going to turn out once we pass the inspection tomorrow. I can't wait to take a video of the solar meter when it is actually spinning.

In the meantime, here are some photos (rooftop ones courtesy of my hubby on a ladder):




front of the house



view down the driveway



what I like to call "Solar Central"


14 panels face SouthEast (down the driveway)



7 panels face SouthWest (front of house)
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Wednesday, August 19, 2009

God Laughs and I Change My Plans for Tomorrow

Laughing DonkeyImage by jaxxon via Flickr


"Wanna make God laugh? Tell him your plans!."

~ Vin Scully

The longer I live with chronic illness, the better I get at reading the writing on the wall. Only today I swear I heard God laughing at me: me with all my plans. Seems I've had a temporary lapse in judgment and gone a little overboard.

I thought it was smart to schedule two medical appointments back to back, Tuesday and Wednesday. I imagined I was being clever planning two medical appointments for Friday; after all, they are in the same place. (Isn't killing two birds with one stone fibro-friendly?) I decided the workmen coming to install the solar panels today would in no way impact my routine or day.

Sadly, I am being proven wrong on all accounts.

Thankfully amongst the giggles, I heard a whispered reminder, The Golden Rule of Chronic Illness: If I pace, I can play. If I push, I will pay. So with a gentle nudge, tomorrow I change my plans and give myself the rest of the week off. I need the rest. I've spent too much time walking on the thin line that is the border of my energy envelope. I've even stepped out of it more than a few times this week. I'm about to pay. Thankfully someone knows I'd rather play and reminded me in a gentle way.

I'm in on the joke. God's not laughing at me, God's laughing with me.
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Tuesday, August 18, 2009

The Energy of the Future Comes to My Rooftop Tomorrow

PANEL SOLAR / SOLAR PANELImage by lcrf via Flickr


Tomorrow we go solar and I'll tell you upfront it's not for the reasons you might be thinking. Sure I want to try and be a little bit green and I want to help fight global warming, though I don't consider myself a modern day hippie or environmentalist. Being environmentally friendly is what inspired a lot of our neighbors in Mar Vista to go solar and landscape with drought tolerant plants. It's a trend here in our community and we might just use this explanation when neighbors ask about our new solar panels. But the real reason we are going solar tomorrow has more to do with the present and our concerns for our future: the reality that for the foreseeable future I am disabled, my limited and fixed income is Social Security Disability, I stay home all day, nearly every day and the inevitable future rise in energy costs.

When you stay home all day, your utility bills go up. You don't get the benefit of staying cool or warm, among other things, at an employer's expense. The increase in our bills wasn't dramatic or monumental, but the decrease in our income was when I stopped bring home a paycheck. I won't lie: it's been a rough adjustment trying to make our budget work with less income. That's why I encourage my husband to consider out-of-the-box ideas to keep our expenses manageable. The reality is that
over time the cost of power, water and natural gas will increase in price. So our investment in solar is our attempt to take the sting out of future power price increases destined to occur over the next few decades.

We found a unique way to go solar with a company called SunRun. Instead of paying for the system up front, we are leasing a system with a guaranteed power output, included monitoring, maintenance
and repairs, plus an option to buy at the end of the 18 year lease, for a low down payment and affordable monthly payments. Our electric bill will be modestly decreased the first year, with the savings increasing year after year. So it really didn't cost much to go solar the SunRun way: the system payment plus our LADWP bill is projected to be less than our current LADWP.

So this is how my chronic illness influenced the leasing of renewable energy and how tomorrow solar panels get installed on the roof of my house. Hope they don't wake me up too early with a rukus on the rooftop!


P.S. Let me refer you to SunRun. If you live in Southern CA, send me an email with your contact information and I will connect you with our very knowledgeable and helpful solar rep Brian. Plus you'll be helping me out with a nice referral bonus. To contact me, just click my picture in the About Me section on the right sidebar. Thanks!


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Oh My Aches and Pains! featured in Grand Rounds Blog Carnival


I am so honored to be chosen as one of the bloggers participating in the Grand Rounds Blog Carnival - Volume 5.47 hosted by Invisible Illness Week.

Check me out under the heading "New Teachers."

"And then we have to get to know these new doctors, explain our whole story again, decide if we like him or her, and see if the doctor will even “accept” us as a patient. Selena writes in Tomorrow I See a New Doctor how shifting her attitude from seeking a cure for her illness to self-management is an important step."

Thank you for including me Lisa Copen and Invisible Illness Week!


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Monday, August 17, 2009

I Need Tomorrow to Recover From The Weekend...

Weekend World album coverImage via Wikipedia

I remember when I longed for the weekends to arrive, back when I was working full-time. That was only five short years ago, but it seems like a whole different lifetime to me now. I know that everything changes, regardless of whether or not you have chronic illness, but what surprises me is how living with chronic illness making everything seem paradoxical.

How I have come to view the weekends is a very good example. For many people, the weekends represent a pleasant and welcome break from work and the daily grind of the week. Weekends epitomize freedom, fun and frolic. As my friend Cynthia wrote on her blog, weekends are for wearing flip flops, the casual and carefree symbol of the weekend.

For me, the weekend can be perilous. It starts with disruptions in my sleep schedule, like when my husband wants to go to bed later and sleep in the next morning. When he gets up to go run his errands Saturday morning, he inadvertently wakes me up with this chain reaction: he shuts the bedroom door, wakes the dogs up and takes them out, the dogs start barking, I get woken up. To top it off, the puppy starts whining when he leaves and I often can't get back to sleep.

Another highlight of the weekend that I look forward to is having my husband at home all day. However, taking advantage of his presence gets me in some trouble. During the weekend, I try to engage him in the tasks that require his assistance and I wind up being torn between trying to get more things accomplished versus sticking to my rest and pacing routines. While I often manage to avoid getting flared up, I definitely spend more time out of my energy envelope that I usually do during the week.

Finally, the weekend has always been synonymous with getting together with family and friends. Problem is, socializing with my friends and family is more difficult for me now. I still yearn for social contact and enjoy being with other people, but physically and cognitively socializing has become exhausting and uncomfortable. In a noisy setting, I struggle with being both easily distracted and overwhelmed by the stimuli. The mere act of paying attention and engaging in conservation drains me. Sitting for long periods of time can be physically uncomfortable, but where in public can you lie down for a few minutes? Going to the movies has become a special form of torture, with the booming percussion, seat shaking loud sound effects and overwhelming visuals. And forget about dinner and a movie: it's one or the other for me now.

The real danger for me, just like good days, is the push to keep up and keep going at the pace my companions set. I am often very distracted and unaware of myself in the presence of other people, even when it is just my husband, and frequently discover that I have spent my social time way out of my energy envelope by the time I finally arrive back home. I manage the danger of social contact by limiting the number of social engagements I committed to and getting extra rest before, during (if possible) and after the outing.

So for me, the weekends have lost some of their shine and rosy glow. I won't go as far as to say that I no longer enjoy the weekends, but the weekends are definitely a challenge. So after a three-day weekend for my husband, I really need tomorrow to recover. You know, kick off those flip flops, lay down and rest.

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Sunday, August 16, 2009

Tomorrow's Forecast: Fog On Coolidge Avenue?

foggy streetImage by r0b1 via Flickr


Today's post will be brief as I am stuck in the fog ... fibro-fog that is. What is fibro-fog? This term refers to the cognitive impairments that are part of living with fibromyalgia and include: short-term memory lapses, poor concentration, impaired ability to think and difficulty remembering and speaking common words.

According to the Arthritis Today website, research is shedding light on what causes fibro-fog. One study using MRI showed that people with fibromyalgia occasionally do not get enough oxygen to certain parts of their brains. Additionally, living with chronic pain causes changes to the brain: in fact, it may result in the brain shrinking up to 11% according to researchers at Northwestern University. While discovering the source of fibro-fog, researchers have also ruled out problems sleeping and depression as causes of fibro-fog.

In my case, I recently learned I have a congenital heart malformation called an atrial septal defect that is allowing small amounts of deoxygentated blood to be pumped back out into my body. Atrial septal defect can be associated with migraines, headaches and a slightly increased risk of stroke. It can also contribute to symptoms of fatigue. I'm not sure yet what this diagnosis means for me or if it need to be corrected, but I am already taking a baby aspirin each day to decrease my stroke risk.

I am fortunate that fibro-fog affects me only once in a while. To combat its effects, tomorrow I am going to concentrate on extra rest and reducing my mental activities. Here's hoping that the forecast changes to sunshine soon.


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Saturday, August 15, 2009

Where Will I Find Myself Tomorrow?

..Image by *~M16_Qtr~* via Flickr


Where you find yourself tomorrow is a function of the positive decisions and actions you take today.

- Akin A. Awolaja

Last week one of my goals was to pondered what I really want and brainstorm ways to remind myself of what I want in positive, loving ways. The goal of this exercise was to further develop my motivation as I have been struggling with completing some new tasks and developing some new habits. I now know from the FlyLady that reminding yourself what you want and reinforcing it with positive self-talk is self-discipline in action.

I've also realized that applying self-help strategies to managing symptoms of chronic illness is really all about refining the skill of self-discipline. According to Wikipedia, the definition of self-discipline is:

Self-discipline refers to the training that one gives one's self to accomplish a certain task or to adopt a particular pattern of behaviour, even though one would really rather be doing something else.

While some of the changes I have made in my life post chronic illness have been relatively easy, other changes are an ongoing struggle. Right now I am feeling stymied trying to incorporate planned daily rest into each day and trying to allocate my time optimally to include home chores. It's left me thinking that one of my faults is not being diligent about doing the things I don't like doing good. But getting mired in a negative assessment of my skills won't help. I need to be focused on learning how to bolster myself with positive self-talk to spur my motivation and my completion of these tasks and behavior changes.

It's good to be a part of a group of other persons living with chronic illness. Through the groups at CFIDS & Fibromyalgia Self Help I am finding others who share my desire to make changes but are having difficulties implementing them. In sharing my struggles with the group, I am at least consoled knowing that many other people struggle with the same dilemma.

Living my best life despite chronic illness presents me with a daily challenge to engage in the numerous tasks and behaviors that help me manage my symptoms of fibromyalgia, chronic fatigue and dysautonomia. To keep my momentum moving forward, perhaps some days I simply need to take a step back and reminding myself of all the changes and tasks I have completed so far instead of focusing on what remains to be done. I need to remind myself that if I am persistent in my pursuit of self-discipline I will find myself in a better place tomorrow.

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