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Sunday, May 31, 2009

I, Throughout Time

Me In TimeImage by AF-Photography via Flickr


I, Throughout Time


I am ending this blog-a-day in the month of May challenge with one last meme, this one a timeline from the last 15 years. I was amazed how many important and interesting things have happened in the past 5, 10 and 15 years. As I tweeted earlier today:
There are years that ask questions and years that answer. ~The Buddha
I think I see this pattern as I completed this meme. Perhaps you will too...

15 years ago, I:

  1. Was living alone in a rented condo in the Palms neighborhood of West Los Angeles when the Northridge Earthquake struck on January 18th.
  2. Discovered on the day of the earthquake that I was no longer in premature menopause.
  3. Received and clung to false hope that I could get pregnant based on information from my gynecologist. What I later learned (see 5 years ago): having regular periods doesn't mean you can get pregnant, nor does ignoring the fact that you had lots of chemotherapy with the advertised side effect of infertility.
  4. As a single woman, bought the home I live in on Coolidge Ave. in the Mar Vista neighborhood of West Los Angeles in July 1994.
  5. Made a conscience and deliberate decision to take a hiatus from my family and go incommunicado for a while as I tried to make sense of my life and where my family fitted into it.

10 years ago, I:

  1. Buried my mother after she died on March 14 from metastatic colon cancer. She was 61 years old.
  2. After my mother's death, devoted the next five years to taking care of my Dad who had Alzheimer's disease, making sure he was getting the best care possible at the assisted living facility where he resided by visiting frequently and unannounced.
  3. Passed the written and oral exams and became a licensed clinical social worker in the State of California.
  4. Celebrated my first wedding anniversary with my husband Robert.
  5. Stayed up for 24 hours watching Peter Jennings on ABC ringing in the year 2000 around the world. Hosted a New Year's Eve/Day party at our home that my sister Romi and LYLAS friend Cyndie attended.

5 years ago, I:

  1. Visited Robert's Grandmother, Aunt Judy and partner Brian and Uncle Howard, Aunt Dena and cousin Evan in Vancouver, Canada in July.
  2. In the Fall of 2004, began exploring family-building options with Robert after receiving a confirmatory diagnosis of infertility secondary to my cancer treatment in 1988.
  3. Tripped-and-fell in October 2004 and began my journey with chronic pain, fibromyalgia, chronic fatigue and thoracic outlet syndrome ... which continues to this day.
  4. Buried my father after he died on December 22 after a short hospitalization from complications due to Alzheimer's disease. He was 70 years old (and would have been 71 if he had lived for 9 more days.)
  5. Saw my sister Amanda and brother Eric at my father's funeral on December 30 (have not seen or heard from them since). Met my nephew Evan and niece Danielle (Eric's children) for the first time (have not had any contact with them since). Spent time with my Aunt Peggy (my father's youngest sister) who also came out for the funeral from Illinois.

2 years ago, I:

  1. Tried the standard treatment for Hepatitis C. I had to stop after three weeks after I came down with multiple infections, treatment side-effects and was hospitalized on September 11, 2007.
  2. Discovered that I am partially color-blind, a probably side effect from the neurotoxic chemotherapies I received in 1988 to treat and cure my leukemia. I do not notice in "real life" any problems identifying colors...
  3. Was diagnosed with dysautonomia, another probably side effect from the neurotoxic chemotherapies I received in 1988 to treat and cure my leukemia. My symptoms include: fast heart rate, lack of sweating when it is hot, feeling dizzy when switching from sitting to standing, heat intolerance and cold hands.
  4. I entered two writing contests: The Short-Short Story Contest sponsored by Writer's Digest Magazine and My Great Life Story Contest sponsored by Glamour Magazine.
  5. Joined Meetup.com to find *very* local (i.e. super close to me) groups that I can participate in. Since joining, I have participated in monthly book groups and a small dog group.

1 year ago, I:

  1. Broke my foot on March 16, 2008.
  2. Was diagnosed with Vitamin D deficiency (which I still have).
  3. Celebrated my 20th year of cancer survivorship.
  4. Started to make a transition from devoting so much time to "treating" my FM/CFIDS to learning how to "live my best life" with FM/CFIDS.
  5. Was contemplating 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.

6 months ago, I:

  1. Was celebrating a "little" Thanksgiving alone with my husband Robert. Thanksgiving is my favorite holiday.
  2. Decorated the outside of the house for Christmas in a new fibro-friendly way, my first attempt since becoming disabled in October 2004.
  3. Made yet another phone call to the attorney handling my mother's estate, which still has yet to be distributed, now over 10 years after her death. The delay is due to the mess she made of the wills, trusts, powers-of-attorney and "financial plans" she completed after my Dad's Alzheimer's diagnosis and her codicil she executed 3 months before her death where she left a portion of her estate to the Catholic Church.
  4. My article The Big Fix: Los Angeles’ New Animal Spay and Neuter Law was published in the South Mar Vista Neighborhood Association Fall newsletter.
  5. Headed out to Las Vegas for a week-long vacation, the first time I had been there since becoming chronically ill in October 2004. Caught the Madonna Hard Candy concert at the MGM Grand Garden Arena while we were there.

Yesterday, I:

  1. Woke up and my husband was home with me because it was Saturday.
  2. Ate meundo for breakfast from Pepy's Galley.
  3. Hung out with my best friend Cyndie who came from Chatsworth to spend the afternoon/evening with me. We went shopping at Petsmart, we met Robert at Mar Vista Lanes and ate dinner at Pepy's Galley and then went back to our home and played Carribean Stud poker until 1:30 am in the morning.
  4. Walked my dogs with Robert.
  5. Kissed my husband goodnight before I went to sleep.

Today, I:

  1. Woke up next to my husband ... because it was Sunday and he didn't have to go to work.
  2. Celebrated my 11th wedding anniversary with my husband Robert.
  3. Ate a special anniversary dinner for two at the Chart House in Marina del Rey at 5:30 PM.
  4. Finished 31 days of our blog-a-day in the month of May challenge.
  5. And will kiss my husband goodnight before I go to sleep.

Tomorrow, I:

  1. Will wake up to an empty bed, because it will be Monday and Robert will be at work by the time I get up and start my day.
  2. Check my cell phone for the Brunswick Morning Report (to find out which dog did what when Robert takes them out at 6:30 am).
  3. Talk with/tweet with/IM with Cyndie before, during and after she goes to work from 3:30 pm to 12 midnight.
  4. Will spend some time in the late afternoon in the garden planting seeds for cucumbers, corn, radishes, beans and other summer vegetables in my containers.
  5. Will kiss my husband goodnight before I go to sleep.


I found this meme here: http://thedailymeme.com/lost/found/000483.php#more


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Saturday, May 30, 2009

100 Words on Things That Fighten & Fascinate Me


Things that frighten me:

  1. Big dogs that bark and bite.
  2. Going down into the tunnels at UCLA.
  3. Being turned upside-down by a carnival ride.
  4. Being alone in the house and hearing strange noises.
  5. Medical and dental procedures.
  6. Earthquakes.
  7. Death.

Things that fascinate me:

  1. Watching the birds in my backyard.
  2. Watching my garden grow.
  3. The human body and how it works.
  4. Is there other intelligent life in the universe?
  5. How things seem to work out for the best most of the time.
  6. Life: Why are we here? What is our ultimate purpose?
  7. The afterlife: Where do we go from here?


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Friday, May 29, 2009

Feeling Fine Because It's Fulfillment Friday


I'm feeling fine because it's Fulfillment Friday! Time to list my accomplishments over the past week to prove to myself that I actually do get things done despite living with chronic illness.

  • Another successful week of daily blog posts.
  • Signed up for membership at the National Blog Posting Month, National Novel Writing Month and Blovelspot.
  • Got my haircut last Saturday. Robert got his haircut too!
  • Spent time with Robert's parents last Saturday. They got to meet Theodor for the first time! :)
  • Went shopping a Costco to use the manufacturers coupons before they expired! ;)
  • Went grocery shopping too. That's a lot of shopping in one week... :p Thank goodness for my Shoprider Dasher mobility scooter!
  • Figured out the whole Verizon FiOS installation thing. See, when you switch to FiOs there is no going to back to the old copper cable phone and DSL service. Apparently FiOS needs a battery backup that needs to be plugged directly into a 3 prong outlet. Of course, they don't tell you this when you make the installation appointment on the phone. I called FiOS technical support to find this out. But when they still couldn't answer all my questions on the phone, I actually corralled a Verizon employee who happened to be in the neighborhood and parked across the street on Wednesday to show him where I wanted to install the FiOS battery backup box to make sure it would work ... crazy, huh? 8-) Plus I had to call our home security alarm company to make sure that FiOS is compatible with call out feature of the alarm system. Whew! A lot of work for $100 back, guaranteed pricing for two years, faster Internet speed and free installation, but we are ready to go for installation on June 6.
  • I scheduled several medical appointments, including an echocardiogram and a follow-up with the cardiologist.
  • Went to UCLA today for my echocardiogram. Got to see and hear my beating heart and had a nice conversation with the tech during the test. :d


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Thursday, May 28, 2009

Blog-A-Day Coming to an End ... Or Is It?


I am so excited. I can hardly believe it. I am almost to the finish line of this blog-a-day in the month of May challenge. I started getting really excited about this over this past weekend when I realized I had blogged more days than there were days left to finish the challenge.

So I decided to join the National Blog Posting Month group over at
http://www.nablopomo.com/. Officially, National Blog Posting Month (NaBloPoMo) is November, but you can pick any month to take the challenge. I submitted my blog for the May blogroll (it isn't posted there yet though) to celebrate my accomplishment and snagged a cool widget (see my right column) and graphic to post on my blog to mark my accomplishment.

Since I can take the NaBloPoMo challenge any time I like, I may not wait until November to blog-a-day for a whole month again. In fact, I am thinking my next blog-a-day project might be a Be Here Now month-long mindfullness experiment similar to the one conduct by ChronicBabe website founder Jenni Prokopy. Here is the post that started Jenni on her journey. And here are the lyrics to the Ray LaMontagne song that was the inspiration:

"Be Here Now"

Don't let your mind get weary and confused
Your will be still, don't try

Don't let your heart get heavy child
Inside you there's a strength that lies

Don't let your soul get lonely child
It's only time, it will go by
Don't look for love in faces, places
It's in you, that's where you'll find kindness

Be here now, here now
Be here now, here now

Don't lose your faith in me
And I will try not to lose faith in you
Don't put your trust in walls
'Cause walls will only crush you when they fall

Be here now, here now
Be here now, here now
Here is a link to hear the song: http://songza.com/z/ot2tn6

Another
idea that my friend Cyndie shared with me is writing something called a blovel, which is a novel in blog form. You can read more about it here. There are suggested rules for a blovel, which include:
  • each post is 500 to 1,000 words long
  • each blovel is about 40 posts long
  • a blovel post is published at least once a week, ideally daily
  • each post ends in a cliffhanger
  • the blovel is written in first person
  • a blovel does not allow comments like an ordinary blog post
  • once a post is published, it can not be editted
It is a great idea and I have signed up for a Blovelspot account. The tentatively title of my blovel is Beneath the Surface and it is in the sci-fi genre. I am considering this blovel as my project for National Novel Writing Month, which is November each year. There is a website from this group too: http://www.nanowrimo.org/. I have some website reading ahead of me here to learn the rules and figure out how the writing word count widgets work. Looks like they don't have things set up yet for the 2009 competition...

I am also committed to blogging the week of September 14 to 20 for Invisible Illness Awareness Week, which is the offical annual campaign of Rest Ministries and Hopekeepers. I have joined Bloggers Unite and signed up to support this event. I also plan to explore the Bloggers Unite website to find more causes that I can support by blogging.

So you see, the blog-a-day in the month of May challenge is becoming a jumping off point for more writing projects and ideas ahead of me and I can't wait to continue writing!





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Wednesday, May 27, 2009

Selena Writes: If I Only Had a Heart...

Today has been a weird day. It started with my tweet:
@SelenaMKI: Woke up today feeling like the Tin Man: can't move, can't reach oil can, under the influence of poppies and not able to get to the Wizard!
See I spent a few moments trying to be witty and descriptive at the same time and suddenly the Tin Man comparison came to my mind. I remembered the scene were Dorothy first comes across the Tin Man in the forest, all rusted and frozen, unable to reach his oil can, unable to move. Unfortunately for me, even with a little "oil" I still feel rusty and move with a lot of "creaking" each and every day. This is even more true right now that I am experiencing a flare-up of my fibromyalgia symptoms; akin to the Tin Man trapped outside in the rain and starting to become frozen in place.

See the more I explain this, the more this metaphor just seems to work for my situation.

Then the kicker: I am waiting for Robert in Costco this evening as he searches for these cheese filled cheese crackers that he is craving. I decide to turn idle time into productive time by checking the voice mail messages on my cellphone. And there it is, another Tin Man reference for the day. This one is about my heart
.

When I had the special MRI study back at the end of March to diagnose
thoracic outlet syndrome, there was an incidental finding that the left ventricle of my heart might be enlarged. I placed a call last week to the oncologist at the UCLA Livestrong Survivorship Clinic asking her to review the MRI study to see if there was anything that needed follow-up. Sure enough, I got a call today saying she and my cardiologist reviewed the MRI and want me to have an echocardiogram and then a follow-up appointment with the cardiologist.

Truth be told, I am a little freaked out. I know a lot of long-term cancer survivors who have cardiac late effects, but was feeling lucky because, so far, n
o damage to my heart has been found. So I really am off to see the Wizard (the doctor), the Wonderful Wizard of OZ (UCLA Medical Center).

My last tweet of the day:
@SelenaMKI If I only had a heart... Just checked my voicemail ... new concern about my heart based on March MRI. Need to go for echo & f/u with cardio.


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Tuesday, May 26, 2009

My Advice: Put a Leash On It!

"What is so hard about keeping your dog on a leash?" I keep asking myself every single time I see a dog out in a public place not on a leash. I KNOW in Los Angeles there is a leash law, but almost EVERY time I go on a walk with my dogs, we see an off-leash dog, more often than not, RUNNING FULL TILT STRAIGHT AT US!

>>>OFF-LEASH DOGS AND MY FEISTY FIDO DON'T MIX

I LOVE my do
g Brunswick, but he is what Patricia B. McConnell, Ph.D. and Karen B. London, Ph.D. call a "Feisty Fido", i.e. a leash aggressive dog. What that means is that, when he was a puppy, he was not properly socialized to be around other dogs and people outside of the home on a leash.

We got Brunswick when he was an adult, so we have no idea how he was socia
lized as a puppy. I have a theory that he was a "grandma's dog": he was the companion of an eldery woman who had grandchildren. He stayed home, was visited by the children and grandchildren of the owner and didn't go out on walks or to the dog park. Now that he lives with us, he has greater exposure to the outside world and sometimes gets a little nuts when on a leash; barking, lunging and growling when he sees other dogs and certain people on our daily walks. We are working with ANIMALOGIST Jan Naud to help correct this behavior, but this is a process that takes lots of time, patience and practice.

So,when a strange dog comes RUNNING FULL TILT AT US, I'm not thinking, "Oh, look, a playful pup wants to come and meet Brunswick." I'm thinking, "Oh shit, Brunswick is going to freak out, get overly protective and a huge dog fight i
s going to break out!!!"

Not to mention my own fears about big dogs get reactivated; yes, I am afraid of big dogs because I was bit in the butt by a standard poodle when I was grade school aged.

Did I forget to mention that those dogs, off-leash, running full tilt at us, are almost always large breed dogs?!?!?! Or that I walk my dogs using a mobility scooter (like Heather in this photo from the Guide Dog Foundation for the Blind website) so I am right down on "dog level" and easily accessed should the approaching pooch decide to take a nip at me instead?!?!?!

>>>RESPONSIBLE OWNERS KNOW: TOP 10 Reasons to Latch That Leash
  1. It is the law. Period. Don't like the law? Work to change it, don't break it!
  2. Dogs get distracted. If your dog isn't on a leash, you won't be able to stop your dog from chasing that squirrel, cat, bicycle, skateboarder, etc., etc., etc. into the street and into the path of an oncoming car. I believe that there is no such thing as 100% recall---for those of you who "think" you can train your dog so that this will "never" happen.
  3. Dogs love putting things in their mouths. We recently went walking and someone left two Hershey's kisses on an outdoor ledge where our dogs could get at them. Chocolate is poisonous to dogs. No leash = no control over a situation like this.
  4. Dogs do not respect wildlife. An off-leash dog will harass and can kill wild animals. An off-leash dog can also be attacked and injured by wildlife, like a rattlesnake or mountain lion. You can read more about it here: Breaking Leash Law Means Death for Wildlife.
  5. Polite dog owners only let their pooches potty on the parkway (the area between the sidewalk and the street). An off-leash dog will go potty just about anywhere, including your neighbors' front yard.
  6. Not everyone likes dogs. A dog on a leash, under the control of their owner, is easily kept away from or removed entirely from the presence of someone who dislikes or is fearful of dogs.
  7. An off-leash dog can be picked up by Animal Control and the owner is subject to citation and fines. Not to mention that being off-leash makes it easier for your dog to simply run away or be stolen from you when you're not looking. You can read more here: In the Doghouse: A Leash-Law Miscreant's Day in Court.
  8. An off-leash dog is more likely to injure a person.
  9. An off-leash dog is more likely to be involved in a fight with another dog.
  10. An off-leash and unfixed dog is more likely to become a parent. Talk about a double whammy! By the way, in Los Angeles there is a MANDATORY spay and neuter law that is probably being ignored as well.

>>>KUDOS TO POPSQUIRE!

Though I am not a big fan of celebrity blogs, I love how Popsquire has posted pictures of celebrity dog owners on his blog calling out celebs who don't keep their pooches on a leash and praising those who do.

According to Popsquire, Responsible Celebrity Pet Owners include:

Natalie Portman
Jerry O’Connell
Minnie Driver
Brooke Burke
Rachelle LeFevre
Naomi Watts

Oh yeah, and "Like Popsquire always says: If you like it, put a leash on it!"



References:
Why Put Your Dog On a Leash
The Leash Law
Important Reasons to Leash Your Dog


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Monday, May 25, 2009

Opposites: A Meme Based on the Examen


For what am I most grateful? Least grateful?

I am most grateful for being alive and kicking.

I am least grateful for all of my health problems.

When did I give and receive the most love? The least love?

I gave the mos
t love when I was taking care of my father during his decline with Alzheimer's. It was truly a labor of love to take care of him: a labor because it was so difficult to watch him slowly slip away and it took all my love to keep up my commitment to him and not let that deter me from his care.

I received the most love in my life from my Grandma Ann when I was growing up: she is probably the one person who has come the closest to loving me unconditionally and always making me feel loved no matter what I said or did.

I gave and re
ceived the least amount of love in my relationship with my mother: as I have previously mentioned in posts, our relationship was very adversarial, highly conflictual and full of strife.

When did I feel most alive? Most drained of life?

I feel most alive when I am connected with nature, like when I was at Girl Scout camp near Big Bear Lake and went on a night-time hike to a secluded spot to see all (and I mean ALL) the stars in the sky. Other favorite memories are: hiking the Grand Canyon and swimming in the Colorado River at the bottom, driving from Palo Alto to the coast and enjoying a cloudy day at the beach, touring the Monterey Bay Aquarium, driving the scenic route from Portland, OR to Los Angeles, hiking in Yosemite and cycling down the Blue Mountain and swimming in the ocean i
n Jamaica.

I feel the most drained of life now that I am living with fibromyalgia and chronic fatigue and immune deficiency syndrome. The overwhelming and debilitating fatigue just makes it feel like the life is being sucked right out of me.

When did I have the greatest sense of belonging? Least sense of belonging?

I really felt like I belonged when I attended the in-person Young Adult Cancer Support Group at the now defunct Vital Options: Support for Young Adults with Cancer in Studio City, CA. We were a very close-knit group brought together by sharing our struggles to live our lives despite having cancer.

I felt my least sense of belonging when I returned to UCLA in January 1989 to complete my
Bachelor's degree in Kinesiology. All my friends had graduated and here I was, a senior, and I was totally surrounded by strangers: no Big Man on Campus status for me!

When was I most free? Least free?

I felt the most free when I moved out of my parents' house and into the dorms my freshman year of college. I was young, excited by the possibilities and eager to start my adult life.

I felt the least free when I came home from the hospital on September 12, 2007 when Hepatitis C treatment landed me in the Emergency Room with tachycardia and shortness of breath. I was so weak I could barely make it to the bathroom and my heart wa
s so revved up from my then untreated dysautonomia that I felt agitated and exhausted. I felt trapped in my body, trapped in my house and worried that if something happened (like there was an emergency) I would not be able to physically handle it.

When was I most creative? Least creative?

I think I am a very creative person most of the time. Lately, I have been hampered by my chronic illnesses at bit, but even so I have been able to find a lot of creative work-a-rounds to make a lot of things in my life "fibro friendly."

In general, when I am under more stress than usual, my creativity suffers.

When did
I feel most connected? Least connected?

I feel more connected when I am tapped into my sense of purpose and destiny and I have a road map in front of me of where I am going, both figuratively and literally. It's accepting and feeling good about it where I am at in my life.

I feel least connected when I am in a transition period in my life; when I am off my path, lost my sense of purpose and my plans have been sidetracked or aborted. Sort of where I am right about NOW.

When did I feel most fully myself? Least myself?

I feel most fully myself when I am connected to my sense of purpose and destiny, when I have a direction and compass in my life. I feel most myself when I am at peace with w
here I am at and who I am and where life is taking me.

I feel the least myself when I have no idea what is going on in my life; when change and challenges have come and toppled my plans, my sense of security, my direction in life. Again, where I find myself at the present moment: picking up the pieces and reassembling them into a new picture.

When did I feel most whole? Most fragmented?

I felt the most whole when I began my relationship with my now husand Robert. From 1995 to 1997, I was in a rare period of quiet and stability in my life. It allowed both myself and my relationship to flourish. Having Robert in my life really helped me to feel whole.

After the inj
ury that lead to my current disability, I went through a period where I felt very fragmented. In part, this is because loss tends to bring up feelings from prior loss(es), even when you have dealt with the previous loss(es). Becoming disabled brought me back for a time to when I was diagnosed with cancer. While I have been currently disabled I have learned about the long term and late effects of my prior cancer treatment.


Thank to the blog Sleeping with Bread for these wonderful questions.




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Sunday, May 24, 2009

100 Words: Who Am I On the Inside?

I am a well rehearsed symphony of electrical, biological and chemical reactions, coordinated by an organic computer located at the top of my spine and encased in bone.

Some of these processes occur without any conscious thought---automatically, naturally. Others occur with input from the senses - taste, touch, sight, sound and smell - and then a response is automatically generated.

Perhaps the most interesting are my thoughts, feelings and choices. It is through my thoughts, feelings and choices that I measure myself as a human being.

After all, why do I like Brussel sprouts, romance novels and classical music?



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Saturday, May 23, 2009

Selena Writes: I want to write about...

  • I want to write about my life, about how I am the "healthiest" sick person that I know.
  • I want to write about how my life hasn't turned out the way that I wanted it to---how obstacles and challenges keep jumping out at me.
  • I want to write about how I have gotten (oh so) good at mastering all these challenges.
  • I want to write about my disappointments and what I do with them, how they inspire and depress me.
  • I want to write about how my life will continue from this day forward, how I will leave the past behind and somehow figure out a way to salvage what is left and turn it into a path I want to travel, a direction I want to go in and a destination that I really would want to arrive at.
  • I want to write about things that will inspire others to live their lives to the fullest, to learn from my example (if that is possible) and not squander what has been given to them.
  • I want to write about the fact that if you can dream it and believe it that you can achieve it.
  • I want to write about how much things have changed in the world in just the past 25, 50, 100 years---how my life, compared and contrasted to my grandmother's life, is both easier and much more complex.


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Friday, May 22, 2009

Fulfillment Friday

It's Friday again and you know what that means ...

another edition of Fulfillment Friday!





  • completed another seven days of blog-a-day posts
  • finished planting seeds from Renee's Gardens into the seed starter (yeah!). I can see sprouts from the Thompson & Morgan seeds I planted the week before...
  • remembered a weekend Urgent Care clinic in Marina del Rey when I needed a doctor's care last Saturday; got in and out in under 30 minutes (WOW!)
  • took my twice-a-day antibiotic on time for the last seven days---three days left!
  • researched and added a couple of extra self-care steps in my efforts to combat sinusitis: steam inhalation with Olbas oil added to the hot water, nasal washes using ALKALOL in the neti pot, consistent use of Mucinex
  • mailed off insurance claims for visits to the chiropractor
  • mailed off a return of an M-Edge Kindle book light that was defective; awaiting the Summer 2009 debut of the version 2.0 of the light which is advertised as "new, improved, and redesigned with customer feedback from the first version." By the way, this company has GREAT customer service!
  • finally learned how to use the Polar heart rate monitor I bought a few months back; will use it to more effectively pace myself. You can read more about the concept here: Pacing by Numbers: Using Your Heart Rate To Stay Inside the Energy Envelope
  • had a conversation with someone close about a difficult topic. It's a conversation that I had been dreading to have for the last month or so. Not sure what the outcome will be, but glad I finally summoned the courage and got it off my chest.
  • scheduled a hair cut appointment for tomorrow. Browsed the Internet and put together and printed a hairstyle photos sheet to bring with me to the appointment.


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Thursday, May 21, 2009

Selena Writes: Six Word Memoir


Everyone has a story.
Can you tell yours in six words?


From the SMITH Magazine web
site:

Six-Word Memoirs: The Legend


Legend has it that Hemingway was once challenged to write a story in only six words. His response? “For sale: baby shoes, never worn.” Starting in 2006, SMITH Magazine re-ignited the recountre by asking our readers for their own six-word memoirs. They sent in short life stories in droves, from the bittersweet (“Cursed with cancer, blessed with friends”) and poignant (“I still make coffee for two”) to the inspirational (“Business school? Bah! Pop music? Hurrah”) and hilarious (“I like big butts, can’t lie”).

I can not lie: I love the conce
pt of a six word memoir. I was first introduced to the concept when a classmate in a Santa Monica College Extension writing class I attended with my sister Romi brought the book Not Quite What I Was Planning to class. I was hooked and immediately began writing six word memoirs in my spare time. When I went on my meme quest this past weekend, I came across the concept again and it reignited my passion.

What I like is the absolute challenge of finding the right words to string together to tell the story. My problem is that, since I feel like in the past 43 years I have lived several lifetimes, I can't settle on just one six word memoir to sum up my life in its totality. But maybe that's the point: you'll have enough perspective to choose the right words the closer you get to the end of you life.

For now, here are the ones I have come up with and want to share with you. Rest assured, I am still coming up wi
th more and find this to be a great activity for those moments when I have time on my hands, nothing to do and another activity isn't feasible: like when I am in the shower, driving the car, falling asleep, walking the dogs, in the waiting room, etc.



















  • Cancer made me who I am.
  • Denial, anger, bargaining, depression, acceptance. Repeat.
  • Made plans. Shit happened. Changed plans.
  • And I was never the same.
  • Forced onto the road not taken.
  • Overcame many obstacles throughout her life.
  • Was all downhill after beating cancer.
  • Kept struggling, kept hoping, kept praying.
  • Woman with house attracted a spouse.
  • Took some risks; met some challenges.

By the way, I think that these six word memoirs would make great epitaphs on a tombstone or plaque or whatever grave marker will be in vogue by the time I get around to kicking the bucket. I am definitely including an epitaph on my grave marker ... maybe even one of the ones above. I guess that's one of the advantages to funeral and burial pre-planning: you get to choose this kind of stuff for yourself and not leave it to chance, your children, your relatives, etc..

Oh, and before I forget:
Submit yours to be considered for SMITH's next six-word memoir book. The first book, Not Quite What I Was Planning, and the second book, Six-Word Memoirs On Love & Heartbreak are out now.

As with the other posts this week, this is a meme and follows these rules:


*Copy and paste these rules to your blog post.
* Link back to person who tagged you.
* Write your six word memoir.
* Tag six random people at the end of your post by linking to their blogs.
* Let each person you tagged know they have been tagged by leaving a comment on their blog.


Since I am not going to officially tag people in this post, if you happen across it and decide to complete this meme, I just ask that you link back to my post on this subject.




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Wednesday, May 20, 2009

My Advice: My One Money Advice (MOMA)


“My One Money Advice” (MOMA) Meme. These meme was started by Moolanomy to help promote financial responsibility.

The question: If you can give one advice, tip, or story related to money, what would you share?

I am no Suze Orman and to be honest, when I first saw this on the Being Frugal blog I almost decided to pass and not complete this meme. That said, after some thought, I realized that I do have a technique I use that I think helps me be more financially responsible. So ... my advice is to use lists to 1) help determine your spending/purchasing priorities and 2) to determine if you really need to buy a particular item. Allow me to explain:

Using a wish list to align my spending with my priorities:

I should start by sharing with you what some of my current wish list items, aka spending/purchasing priorities are: remodeling the kitchen and bathroom, refinishing the hardwood floors, installing a solar power system, converting the gardens to water-saving, drought-tolerant plantings, expanding my container vegetable garden and fencing in the front and back yards.

On a daily basis, when I know what my spending priorities are, it makes it easier to "go without" certain things knowing that I am saving the money to spend towards my priorities. When I finally get the money saved up and start think about making major purchases or hiring someone to work around the house, I look at my wish list, aka spending/purchasing priorities, and ask myself, "Am I spending money on my priorities?" If yes, then I proceed. If no, I ask, "Can the expense wait or be delayed? Does it need to be added to the wish list? Is it a bigger priority right now? Will it lead to getting a wish list item completed at a later time?" and proceed accordingly.

I find that if I can keep my priorities in mind, it's easy to limit my day-today spending if I am doing it in the service of fulfilling my dreams and crossing things of my wish list. To this end, I write my wish list down on a whiteboard that is stuck with magnets to my refrigerator door. Being married, I share this list with my husband and recruit him to be on board with these priorities as well.

Using a wish list as a "wait and see" tool:

The second way I use a wish list is when I want to buy every day, ordinary items that aren't clear necessities like food, medicine, gas for the car, etc. I make a list of the discretionary items I would like to purchase, with the goal of putting off the purchase for at least one month. In that month's time, I see if a) I still want the item, b) I have found an alternative that is cheaper/free/can be made from something I already own and c) if I have found the item on sale or on eBay for a lower, more affordable price. Putting the breaks on buying things in this manner has really decreased a lot of impulse buying. Sometimes having the time to think purchases through means realizing you can get by with something else, you actually need something quite different or don't really need that item at all. Some items do fall off the list after a month; some items are definitely purchased. It just seems to make buying items a more conscience, thoughtful process and in the end has resulted in fewer episodes of buyer's remorse as well as fewer merchandise returns.

You can read the original post I saw that inspired my blog post on this meme at: "I’ve Been Tagged! | beingfrugal.net" - http://beingfrugal.net/2007/08/18/ive-been-tagged/#ixzz0FqzoIMf6&A



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Tuesday, May 19, 2009

Life Gave Me Some Lemons and I Made Delicious Lemonade

Have you ever been in a situation where you’ve made lemons into lemonade?


Please share!


And now for the rules and other technical stuff:


LIFE GAVE ME SOME LEMONS
AND I MADE DELICIOUS LEMONADE

Rules:

* Copy and paste these rules to your blog post.
* Link back to person who tagged you.
* Write about an incident in your life you first thought was really bad, but ended up being a blessing.
* Tag six random people at the end of your post by linking to their blogs.
* Let each person you tagged know they have been tagged by leaving a comment on their blog.

Today is the second in what is shaping up to be a week of meme posts. I tried to find really good memes that were interesting and thought-provoking, and I hope you agree that this one fits the bill.

As you may know from reading my blog, I had cancer when I was 22. 1988 was supposed to be the year that I was going to graduate from UCLA with my undergraduate Bachelors of Science degree in Kinesiology. Needless to say, instead of finishing the final classes needed for my major, planning for the future and making plans to stay in touch with college friends, I spent almost an entire school year in and out of the UCLA Medical Center. I literally disappeared from my classes and campus; I often wonder if any of my classmates noticed or wondered what happened to me. For a while, college and finishing my degree were the last things on my mind. I am fortunate that my cancer went into remission with treatment and I was able to return to college in January 1989.

Now I thought that the big issue I was going to deal with in the 1987-88 school year was what I was going to do once I graduated from college. I had started out pre-med and a biology major. I also started my college days transitioning from a sheltered all-girls Catholic high school to a co-ed college dormitory with parties on the weekends and alcohol for all. I'll admit I had my share of fun and spent some time enjoying the college experience. From the beginning, my grades weren't bad but they weren't the straight A's I so easily got in high school either.

By the end of my freshman year, I let some of my dorm neighbors convince me that anything less than straight A's wasn't going to get me into medical school, which is too bad because that isn't the hard and fast truth. I switched my major sophomore year to Kinesiology, which was also a pre-med track, just not so competitive and unfriendly. By the time I got to 1987 and my 5th year senior year, I was searching for alternatives to medical school because by then I had fully convinced myself I could not get into med school with a 3.0 GPA. I was beginning to explore dental and pharmacy school.

Then I had the "other side of the coin" experience as a cancer patient. By the time I was done with treatment, I didn't want to be a doctor nor did I think I had the physcial stamina for the all-nighters and insanely long 36 hour shifts. Plus I definitely wanted to have time to enjoy my life in addition to work. I still wanted to work in the medical field, but as an allied health professional, i.e. someone other than a doctor or nurse.

Two experiences pointed me in my final direction. The first occurred five months into my cancer treatment, in May 1988. A social worker came to visit me in the hospital and asked me a lot of questions. Turns out, she had information that I wish I had been given when I started treatment! Where was she when I was first admitted back in January? She told me about Supplemental Security Income (SSI) from Social Security, a disability program that I could qualify for that would give me a monthly income. When I was diagnosed, two of the things I had to give up were my apartment and part-time job. The doctors told my parents I had to move back home with them. Being short on cash and living at home were truly nightmares; I actually looked forward to my one month stays in the hospital where at least I had a room to myself. I applied right away, and although the process took several months, SSI enabled me to move into a shared apartment near campus and supported me when I was able to go back to college and finish my Bachelor's degree.

The second was a social worker who facilitated a support group for young adults with cancer. Her name was Karen and she lead our group of eight over several years of remissions and recurrences, new beginnings and deaths, losses and discoveries. I was the youngest person in the group and the only one affected by leukemia, but that didn't matter. Karen helped us see the similarities in our situations and the strength we had together even when, as individuals, we felt weak and vulnerable. The group experience was amazing, in part because Karen was so skilled at helping each one of us be open when we shared, supportive when we listened and connected when we sat together in a room once a week to talk about our lives and the cancer that threatened it.

So when I made it back to college, I knew I wanted to go on to graduate school in Social Work. I applied during my senior year, 1989-1990, and chose to attend the UCLA School of Social Welfare. Although not officially advertised, I was able to turn the two year full-time program into a three year part-time one to accommodate my lingering health issues and graduated with my MSW in 1993. I worked for many years in the field of HIV and AIDS, both in medical and nonprofit settings. In 1999, I passed the California State licensing exam (on the first attempt for both the written and oral exams) and became a licensed clinical social worker. I truly enjoyed being a clinical social worker and I am deeply saddened that my current chronic health problems prevent me from working in my chosen profession at this time.

Social work was a good fit for me, and if I had not had cancer and the experiences that went along with it, I may never have considered a career as a clinical social worker.

A career in social work is how I turned lemons into lemonade back in 1988. And I am still figuring out how to turn the lemons I was handed in 2004 into lemonade, so stay tuned...

Thanks again to the Being Frugal blog for another great meme idea. Here is a link back to her blog and her post on the same meme:

Read more: When Life Gives You Lemons, Make Lemonade | beingfrugal.net


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Monday, May 18, 2009

5 Courses to Fix My Life---A Blog Meme

Here are the rules for the meme:
“Devise a list of 5 courses you would take to fix your life. It’s more fun to be in classes with friends, so include them into at least one class. Tag five people to complete this meme as well.”


So if there was a school that offered classes that could help me "fix my life", these are the courses I would be looking for:

1) Home Improvement 10: Do-It-Yourself Home Improvement Seminar

It would be
wonderful to be able to fix the things that break and fix-up everything else around the house all by myself. It is so hard to find good contractors and handymen to begin with and it costs so much once you have found someone. My Dad was always so handy around the house and I regret not spending more time with him learning the skills he possessed. I would drag my husband Robert to the class with me, as he is less than handy around the house.

2) Psychology 251: Advanced Seminar in Psychological Manipulation

I know this one sounds sinister, but I promise to use this knowledge for good and not evil! This information would help me unravel the psychological morass of my childhood, prevent family from manipulating me in the present and help me to reset my mind so that I can condition my mind positively. After all, when you act happy you soon will feel happy.

3) Chronic Fatigue and Fibromyalgia Self-Help Semester-in-Residence

I have taken all the available classes and participate in the all groups offered by the CFIDS & Fibromyalgia Self Help group. At this point, what I feel I need is a in-residence program were I live, breath and sleep all the self-help principles I am trying to incorporate into my every day. It's one thing to try to make changes with a group online and another to do the same thing in-person in a residential group setting.

4) Personal Finance 40: Advanced Topics in Personal Finance

This is another class I'd take with my husband Robert. It's not that we don't have a handle on basic money management. Quite the contrary. But in this time of economic downturn, limited and tightening credit markets and the mortgage meltdown, it wouldn't hurt to learn more about personal economics. At the end of the day, it would be nice to feel ahead of the game and not just struggling to get by.

5) UCLA Extension Writer's Program


O.K., this one is actually a real program and I would love to attend classes with my friend and fellow blogger Cyndie of A Writer's Crazy Journey. I want to attend to learn more about the process of creative writing and my goal is to earn a Certificate in Creative Writing in Fiction. I want to start a second career as a writer because it is a work-at-home, fibro-friendly career. While it would be nice to write a national bestseller or a work of literature that stands the test of time, I'd be happy to just make a living writing Harlequin Romance novels!


Thanks to the blog Being Frugal for this blog meme idea. You can read the original post I found here:

Read more: "5 classes to fix my life | beingfrugal.net" - http://beingfrugal.net/2007/10/30/tagged-with-the-5-classes-to-fix-my-life-meme/#ixzz0FvlOC8x4&A






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Sunday, May 17, 2009

Getting the Rx Cure: It's a Numbers Game


Maybe it's a sign of how far science and medicine have come. Today, there are a lot of treatments for medical conditions. So when someone we know or love is diagnosed with a condition that has no cure or treatment or baffles doctors we wonder, "Well, why don't they know how to treat that?"

It's a legitimate question, one I've even asked myself. The problem is the assumptions behind the question:
  1. that medicine knows everything there is to know about the human body and how it works
  2. that medicine knows everything there is to know about all disease causing entities---bacterial, viral, fungal, prion, genetic, etc.---and how they work
I know that, despite how doctors may talk and act, they don't know everything.

For some really complex systems in the body, like the brain and nervous system, what is known is dwarfed by what is not known. For some diseases, like HIV/AIDS and Alzheimer's, even if there was a cure tomorrow, there is no technology to repair the damage to the human body that these conditions inflict as part of the disease process; there is no way to repair a damaged immune system lacking T-cells or a brain full of amyloid plaques and neurofibrillary tangles.

Then there is the process of how medical discoveries are made. Among the many steps, somewhere near the beginning of the process a medical researcher must step forward and identify a problem or issue to explore, usually something that holds their interest, sustains their curiosity, drives them to find answers and fuels a willingness to "jump through the hoops" of the research process. Next are the dual issues of money and need. The medical researcher needs money to conduct their research and, at a very basic human needs level, they need to bring home a paycheck. Part of the process to acquire money is to prove need: how many people are affected by the condition that is being researched and how dire is their situation. Somewhere someone is thinking about the "big picture" and the "payoff" too, i.e. what is the probably outcome of the research---a medication, a surgery, a procedure---and how much money will it generate.

It's a lot of hurdles to jump through just to get the research started.

Once the problem is identified, need established and funding secured the science can begin. Scientific discovery is a lot like life: the more risks you take the more you get in return. In the long run, it has lead to all the treatments we rely on today. In the short run, it means a lot of trial and error and a lot of money, time, energy and resources wasted.

I know a little bit about all of this first hand as I have been following the progress of potential antiviral treatments for Hepatitis C (HCV). I began in earnest following the HCV drugs in the research pipeline in 2005, when it was suggested to me that my fibromyalgia symptoms might be related to my chronic HCV infection and I needed to consider treating the HCV. I have been waiting for the antiviral drugs in the pipeline to make it out of clinical trials and into the pharmacy.

Periodically I log onto the HCV Advocate website and the webpage Hepatitis C Treatments in Current Clinical Development. I have cut and pasted from this webpage because I think the graphical view of this table alone paints a picture of the road to medical discovery. Take a look at the columns below. Phase I is right out of the test tube and Phase IV is in the pharmacy, ready to prescribe:


Phase I Phase II Phase III Phase IV
HCV/MF59 Oral Interferon alpha Viramidine Infergen/
Consensus
Bavituximab (Tarvacin) Civacir Albuferon Nexavar
IL-29 (Type III Interferon) Omega Interferon ZADAXIN® (thymalfasin or thymosin alpha 1)


NOV-205 PF-03491390 (formerly IDN-6556) VX 950 (telaprevir)


ITMN-191 IC41 SCH 503034 (boceprevir)


Belerofon (oral) MX-3253 (Celgosivir) Eltrombopag


R7128 DEBIO-025


A-831 GV1001


PeviPROTM PI-88



TG4040 BLX-883 (Locteron)



ChronVac-R MitoQ



IMO-2125 SOV-07



LGD-4665 Alinia (nitazoxanide)



CF102 VCH-759



VCH-916 Oglufanide disodium



VX-500 TMC435350



PF-00868554 GGI-5005 (Tarmogen)



SPC3649 (LNA-antimiRTM-122) CTS-1027



ABT-333 SCV-07



ANA598 SCH900518 (518)



IDX184 BMS-790052



CYT107 ITX5061



PHX1766 A-832

VX-813 GS 9190

ANA773 Oral Interferon

BI 201335 CF102

SCY-635 GS9450

ABT-450 HCV


PSI-7851




So as of May 7, 2009:
  • 29 drugs in Phase 1
  • 27 drugs in Phase 2
  • 6 drugs in Phase 3
  • 2 drugs in Phase 4 (in addition to the "standard" treatment of Pegylated interferon and Ribavirin)
  • 41 additional drugs made it to human clinical trials but those studies have been canceled (not shown in table above).
As you can see, medical research starts with lots of promising ideas, but the closer you get to the finish line (Phase IV), the list gets smaller and smaller.

It seems to me that it's all a numbers game:
  • how many researchers are interested in finding out more about a certain medical condition and possible treatments
  • how many people have this condition
  • how much money will it take to develop a treatment
  • how many treatments will be tried before they find the one(s) that work
  • how much money can be made from a successful medication once it reaches the pharmacy
I know that the way this process works leaves some medical conditions with less attention, less funding and less hope for patients. I have a very goood friend who has been diagnosed with LAM, or lymphangioleiomyomatosis (lim-FAN-je-o-LI-o-MI-o-ma-TO-sis) which is a rare and fatal lung disease affecting women in their 30s and 40s. LAM affects about 10,000 women in the United States and very little money goes to research for treatments that can help prolong the current prognosis of 10 to 20 years from diagnosis.

My discussion of this topic is not meant as an endorsement of the way medical research decisions are made. Rather it is food for thought, because if there is going to be health care reform it will affect medical research funding. If you only have so much money to pay for health care, then how do you decide what to pay for? How much goes to medical research? How do you decided which conditions to focus on? How do you play the Rx cure numbers game?




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