Saturday, September 30, 2006

Sunday Scribbling - "Skin"

When I was a child sun screen was not a priority because as my dad proudly used to say "you have my Italian olive oil in your blood." I was raised camping, water skiing and snow skiing. Creating a nice brown glow that made my mother bristle as she applied her Solarcaine. As a teenager I was not prone to acne and had nice skin dotted with a few freckles. I would always be laying out with my pals soaking up the sun. Even during both pregnancies I had no stretch marks on my skin and after seeing my mom’s stretch marks, I felt very lucky I had good skin.

My skin was able to do its job until I was diagnosed at 29 with ALS. As skin ages, it becomes thinner, has less elasticity and decreased blood flow. The skin is one of the most important parts of the body. Its purpose it to protect us from pathogens, gives us insulation and regulates our temperature, to name a few. My muscles are all slowly shrinking which puts the nerves much closer to the skin, making it tougher for the skin to do its job. ALS also is much more sensitive to temperature, cold makes my spine ridged and heat zaps all of my energy. The skin is unable to help control this.

At 35 my skin started to make more drastic changes from aging. Now at 45 my arms jiggle, my breasts look like deli sausages hanging in the store front window, and I have no clue where my butt went. The years in the sun have added numerous sun spots and character wrinkles to my face and body. As we age, skin receives less blood flow and lowers gland activity. So my feet are always cold, I’m dealing with acne and a rare skin disease called Pleva. Pleva is tiny blisters on the skin like chicken pox, which are not attractive! The only real treatment is , get this, the sun! Beauty comes from inside and no illness or aging process can touch that. Every woman can be beautiful in her own skin.

My skin is hanging on for dear life and because it continues to fight, how can I let it down. I’m comfortable in my battle weary armor and proud to wear it. Inside I’m all woman and as long as I’m breathing I will embrace every chink in the armor as merely a battle scar protecting my womanly spirit. With aging comes wisdom and a whole new definition of sexy.

Thursday, September 28, 2006

Poetry Thursday

This weeks prompt is to use synaesthetes "experience colors when they hear, read or even think of letters and numbers. For others, words can trigger a real sensation of taste on their tongue. There are numerous types of synaesthesia, and they can involve all senses - vision, hearing, touch, taste and smell." My husband's accidental chrysanthemum bush was my inspiration because we can't take our eyes off it. For Dave :)


I remember when you were small and pretty
but the seasons changed, covering
you in heavy snow smothering
you in a silent death,

so I replaced you.
And planted a circle of pansies
to adorn the bird bath.
Spring had arrived

playing it’s symphony in color
as the bulbs surfaced, like a delicate string,
and learning their song as they rose
I could hear,

the music beginning to tune in rhythm,
with tulips in purples and daffodils in
yellows, and the greens of grass all
together again.

Then I noticed,
unusual stalks of green that had no
song, but kept growing long past
the sounds of spring, smothering the
pansies and growing up the bird bath.

As fall arrived you were to be the final piece,
and as your stalks began to bloom, I remembered
your old song smothered in white.
You emerged triumphant and tall, your color sang
to me brilliantly, loud and clear,
a solo, to end the year.

Wednesday, September 27, 2006

Fun with a Meme

1. FIRST NAME? Tammy/Tamara
2. WERE YOU NAMED AFTER ANYONE? Debbie Reynolds in "Tammy and the Bachelor."
3. WHEN DID YOU LAST CRY? Last week over a tv show :)
4. DO YOU LIKE YOUR HANDWRITING? No, can't be read except by pharmacist.
5. WHAT IS YOUR FAVORITE LUNCH MEAT? Roast beef & brown sugar ham.
6. IF YOU WERE ANOTHER PERSON, WOULD YOU BE FRIENDS WITH YOU? Oh yeah! I'm funny and not a flake.
7. DO YOU JOURNAL? Yep, you're reading it.
9. WOULD YOU BUNGEE JUMP? Nope, no way, no.
10. WHAT IS YOUR FAVORITE CEREAL? Coco Puffs, but usually eat a power bar :(
11. DO YOU UNTIE YOUR SHOES WHEN YOU TAKE THEM OFF? Nope, Dave does but I try and stick to mules.
12. DO YOU THINK YOU ARE STRONG? Mentally yes, physically I'm working at it.
14. SHOE SIZE? Size 8 and I'm 5ft 1" I'm thinking it's to balance boobs.
15. FAVORITE COLOR? Dusty rose, sage and maroon.
17. WHO DO YOU MISS THE MOST? Grandma Margie
18. DO YOU WANT EVERYONE TO SEND THIS BACK TO YOU? I'd love to read my bloggies answers.
20. LAST THING YOU ATE?Power bar
21. WHAT ARE YOU LISTENING TO RIGHT NOW? Computer fan & dog snores.
23. FAVORITE SMELLS? First rain, Dave's breath, tk's neck, A roast and baking breads.
27. FAVORITE DRINK?Dr. Pepper, Arizona ice tea w/honey and a Latte.
28. FAVORITE SPORT? Only a Packer game to watch Dave turn into a crazy person.
29. EYE COLOR? Hazel
30. HAT SIZE? Medium
31. DO YOU WEAR CONTACTS? No because my eyes are bad and I'm a procrastinator.
32. FAVORITE FOOD? Fried chicken w/white gravy and mashed potatoes, Steak, toquitos and Japanese.
33.SCARY MOVIES OR HAPPY ENDINGS? Happy endings, it takes alot to scare me.
34. WHAT COLOR SHIRT ARE YOU WEARING? White bathing suit cover up. It's 90 here and I'm still in the pool.
35. SUMMER OR WINTER? Winter but love spring and fall more.
37. FAVORITE DESSERT? White cake w/white frosting and a Nutrageous bar. Oh, buttered popcorn and red licorice.
38. WHAT BOOK ARE YOU READING? Why I Wake Early by Mary Oliver & True Balance.
39. WHAT'S ON YOUR MOUSE PAD? Yellow lab puppies
40. WHAT DID YOU WATCH LAST NIGHT ON TV? I Tivo but caught Nip/Tuck & Prison Break.
41. FAVORITE SOUNDS? Birds in the morning, Dave & TK's laugh and the forest.
44. WHAT'S YOUR SPECIAL TALENT? Facing adversity, organized and encourager.
46. WHO SENT THIS TO YOU? Stole it!
47. NEWEST THING YOU'VE TRIED? Letting go of the past, I suck at it.
49. WHO DID YOU LAST SEND A CARD OR LETTER TO? I only do online cards and it was to V.

Tuesday, September 26, 2006

Self Portrait Challenge- "With Someone"

When I moved my girls from the city to the country nine years ago, I met a real earth angel. I had moved to a beautiful location, bought my first home and was a single, disabled mom. The thing that freaked everyone out was that I did not know a single person here. That kind of hit me once I was sitting here on boxes in my new home with two hungry kids and no fast food in sight. A knock on the door and we met a live angel named Lynne.

Lynne and her husband took my family under their wings. Rick was a great handyman and helped us with the computer. Lynne became our family, confidant, helper, mom and friend.
They are a retired couple with no children who spend most of their time helping others. I could never list in one post all that Lynne has done for my family but I can say she has given us a feeling of being loved, feeling safe and watched over. Changing us all for the better!

She helped me prepare for my first date with Dave worried the whole time that he might be a "bad guy." It was 102 degrees and my air conditioning had gone out in the car. With ALS heat is a deal breaker and I had to drive an hour away to meet him. Lynne thought computer dating was crazy but she filled an ice chest with ice and left it open in the passenger seat with the fan on. She tucked a pack of dry ice under my butt, made a picnic basket and hugged me goodbye. I had to call upon arrival and let her know that he left his chainsaw at home. It was perfect that Lynne and Rick flew to Kauai to be our witnesses for our wedding.

She taught me all about finances, giving back and loving. Even though I have Dave she still fills my pills, brings over an occasional favorite dish, dyes my hair, we go to lunch and watches out for me if Dave is out of town. She is the hardest part of leaving this area because I will miss her terribly but I plan on calling A LOT! (She is rolling her eyes as she reads this). I love you Lynne!

Monday, September 25, 2006

One Deep Breath - "Windows and Doorways"

Morning light enters
wafting scents of dried flowers
crisp air freshens room

Waiting for the sun
finding my place in the room
patiently watching

For other haiku visit here

Sunday, September 24, 2006

Sunday Scribbling - "Instructions"


1. Neck kisses and birthday song to start the day!

2. Morning coffee and cuddles in bed. Watching CBS with Charles Kuralt and of course Dave and lots of dog kisses.

3. The Perfect gift for a picture gal! Slideshow/MP3 music, 7" LCD screen picture frame...Waahoo!

4. Early movie (Little Miss Sunshine) that makes you both laugh until you cry.

5. Great gourmet dinner of shared Chicken Marsala and Mesquite Tri-Tip. Excellent! (had trouble tasting it all with my cold) LOL

6. Home for white cake with white frosting. Ahhhhh!

7. Happy Birthday cards and messages from loved ones.

8. A huge thank you to God for one more year with Dave!!!!!!!!!!!!!!!!!

Saturday, September 23, 2006

TK Thursday Cut Short

I see my grandson every Thursday and now that he's crawling around, just holding him in my lap takes every muscle fiber I have left :) Yes, that's me in a bathrobe because I caught a cold and luckily TK already had one. I kept my kisses to his neck and ears :) He always has sports clothes on so I got him a tee shirt that says "If you think I'm cute you should see my Grandma." LOL (Other cute sayings).

I am trying to not get really sick so I have been in bed watching all the new shows with Tivo. Dave was off Friday so we cuddled up with Sun chips and Halloween candy. We liked Shark, Kidnapped, Nip/Tuck, Survivor, ER, Law & Orders and Men in Trees. Perfect sick bed!

I think I might have misrepresented my poem below...oops! It was Jesus not Dave I was referring to :) Dave can't seem to get the walking on water thing down, heck he still argues with Tivo and DVD player :)

See you on Sunday Scribbles! Have a great weekend :)

Thursday, September 21, 2006

Poetry Thursday

This weeks prompt is to share a poem that speaks to your authentic self. I wrote a poem about a "visit" that gave me the freedom to find my authentic self.

A Night to Remember

As I drifted off to sleep I
could hear the thoughts
of fear entering my mind.
They hang like bats waiting
to fly in the night.

I felt the bed go down as if
someone was sitting beside
me. Fear locked my eyes shut,
heart raced, this is not real.
Peace replaced fear.

As I lifted my head
forcing my eyes to see
I find you looking back at me.
Tears rolling down
your face, eyes showing more
love than I’ve ever known.

You beckoned me into your arms,
soothing me without spoken word.
Yet, I heard you as your tears fell,
holding me as your child.

"I feel your pain and I will never
leave your side. I am with you

When I woke I felt like a child
on Christmas morning.
It was a pure joy
not overshadowed by fears.
I was set free knowing

I will never walk alone.

Tuesday, September 19, 2006

Self Portrait Challenge- "With Someone"

This is my first child Michelle as I put my grandmother's pearls around her neck on her wedding day. Was it really almost 23 years ago that I looked into these beautiful eyes for the first time? Never mind the many tattoos, the patients of a Nat, the temper and that she talks like a sailor, she has a heart of gold. To show you the heart of this woman I must look through the cracks in the many walls she has built. I am the only person on earth that has seen the blinding beauty she fights to hide.

When she was in Jr. High I had taken her to a Saturday morning errand to K-Mart. She was not thrilled to be up much less in K-mart. As we worked our way down the isle I suddenly felt a cramp and before I knew it I lost my bowels in my sweatpants. I just knew Shell would be horrified so I made light of it, even though I wanted to die. I joked about it when I told her and she joined in. We laughed all the way home as her head hung out the window from the smell. She put me in the shower and gently took my clothes off and disposed of them. When she came back my tears were flowing. She began to bathe me as I had done for her hundreds of times, in a loving, gentle way. She dried me and held me in her little arms until I gathered my strength. I never will forget that day and the many more like it. She was so strong and had to grow up so fast, but became a compassionate, loving woman. May her walls come tumbling down to finally set her free!

Mommy will always love you!

Monday, September 18, 2006

One Deep Breath - "Delicious Autumn"

Fall covers summer
temperatures fall with leaves
natures last hurrah

Brown, yellow and orange
earthtones to warm our spirit
winter closing in

Leaves falling like rain
crisp breeze stirs the leaves in air
sacred dance of fall

Saturday, September 16, 2006

Sunday Scribbling - Gift of Voice

This weeks prompt is to come up with your own subject, but the catch is: choose a subject you want to know more about, and research it a little. This was perfect timing for me.

When I was diagnosed with Lou Gehrig’s(ALS) disease I went to a support group and did some computer research. Most of it was very scary so I stopped doing it and decided to find my own path. Neurologists either pushed me off on general doctors or needed me for a drug trial. The general doctors I saw had never seen my illness before and I gave two years to a drug trial that failed. So I turned to the ALS foundation and they were offering equipment I did not need yet and encouraged another support group. A Merry go round I wanted off of so I just went to a neurologist once every 3yrs or so to check in. Lou Gehrig’s(ALS) no longer looked scary and I kept up on advancements through websites. I was not ALS it was just a part of my life.

I’m an unusual case because I’m in the 1% of people who survive 16yrs. I don’t buy into percentiles anymore because of variables. I do know people progress quicker than I have and there are mortality rates which I think are damaging. Hope of life is rarely offered. A fellow I know says "ALS is not terminal, life is terminal" and he doing well living on a ventilator. There are electric wheelchairs, feeding tubes, catheters, trach tubes(for saliva suction), bibaps (breath for you at night) and ventilators(breath for you 24/7). Each person deciding when and to what point, as individuals, they will go. I am not at any of these stages yet but I am at a point where I need technology for tomorrow. This is where I found help

My speech makes me sound like a drunken sailor and I have read of new technology that can preserve my speech as it is today for when I can no longer speak.

"An important part of the overall ModelTalker project is the development of software that assists individuals in recording their own speech and then converts the recorded speech to a ModelTalker synthetic voice. This is a process often called "Voice Banking" and is of particular importance to individuals who are at risk to lose the ability to speak. Voices created with our voice banking software (called InvTool) can be highly intelligible and natural sounding and, crucially, capture recognizable voice characteristics of the person whose voice was recorded. Using InvTool an individual with ALS, for example, can record their speech, convert it to a synthetic voice for use in the ModelTalker TTS system, and then be able to use their personal voice in an AAC device when they are no longer able to speak intelligibly."

It’s experimental and offered to people who want to test it. It will take 10-15hrs to complete but how cool for my family to hear "I love you" in my own voice when I can no longer say it. I already have loved ones pretending they understand me and I find it insulting. I prefer to repeat myself but do get frustrated when asked "what" too many times :) I’m human! My best friend said people are inherently bad listeners. :)

Technology has given quality of life back to people like me. Now that I’m blogging I will need to find a way to type, as my one typing finger gives out. Blogging helps strengthen my finger but my trunk and shoulders tire. Every thing is connected but there are always a way around it. My next project is to find affordable typing technology before I need it. There is stuff out there where you can use your eyes to type, but that research is for another day.

Thursday, September 14, 2006

Poertry Thursday

This week I chose the challenge of writing in the style of my favorite poet Mary Oliver. Picture each stanza in a diagonal format because blogger refused to allow it. I recently went camping and it was beautiful but very cold for ALS. Worth every moment ;)

A Walk Worth Taking

In fall,
into the forest
of tall pine,
and cedar,

I twirl, looking
to the tops
of their towers
and the windows

to the sky–
and I squint
as the sun
finds its way to my face

warming my body,
tiny fairies dance,
floating in the light,
never falling to the ground—

sweet aroma of pine,
green and
secret haven,
I know,

even as I feel
the exhilaration
my feet are cold my hands
begin to numb

and stiffen
becoming a nuisance—
as I head for
the car,

to warm up
surrounded by the
change to fall.

Tuesday, September 12, 2006

One Deep Breath-"Emotion" Tanka

Tanka are written in a 5-7-5-7-7 syllable structure (or short, long, short, long, long) and include a "pivotal image", contemplation and emotion. They are also more lyrical and literary than haiku.

Looking toward the sky
I see trees reaching for light
seeking to heal
as they stand tall together
helpless to change their future.


I see denial
in the joy of his smile
living through each day
remaining strong as the trees
while shining his light through me.

Monday, September 11, 2006

Self Portrait Challenge- "With Someone"

Keeping warm in the tent
Watching a movie on DVD player in camp eating red licorice. . . Hehehe

Meet my Dream Maker

Dave has made my dreams come true in many ways. Finding a man who chooses to love and marry me knowing what lies ahead is just one. Making my life easier and happier is another.

I have always been a outdoor girl who loved to go camping but when I became more disabled I had to give it up. Dave is a fisherman and duck hunter but never camped. He wanted to see if he could figure out a way to make it happen for me. He bought camp gear but knew he would need to add a few extras to make it work with ALS. He bought a queen size air mattress cot (off floor), a tent potty and propane heater for night. He also lovingly stuffs my clothes with "Hot Hands" pocket warmers and got me a reclining camp fire chair. I camp and fish again...woohoo! The smell of campfire smoke, the crackling of the fire and coffee in the crisp morning air can't be beat!

Dave fell for camping right off the bat even though he had to do all the set up and cooking. He does curse at the tent each time he puts it up and takes it down but he loves building a great fire. I was able to give back by showing him the art of a smore which is now his favorite part. He had never had one...geesh! I taught him the girl scout version which means you wrap it in foil and place near fire until oozing. We went up this last weekend and had a ball. Dreams do come true "with someone" like Dave.

Sunday, September 10, 2006

Brian Joseph Cachia

2,996 is a tribute to the victims of 9/11.

On September 11, 2006, 2,996 volunteer bloggers will join together for a tribute to the victims of 9/11. Each person will pay tribute to a single victim. We will honor them by remembering their lives,and not by remembering their murderers. Please click on this limk and meet Brian Cachia, 26 lost in tower 1 at the World Trade Center on 9/11. He was a Technical Support Specialist for Cantor Fitzgerald on the 103rd floor. Brian was a single man who looked forward to starting a family and his hobbies were skiing, fishing and sports. He had a passion for music and even composed his own pieces. He grew up working in his dad's store and was well liked in his hometown in New York. These slides were put together by his family who miss him terribly.


The world is no longer as it was
the day God called you home.
Fear and hate have reared their
ugly faces changing the world.

One fateful morning your dreams
fell to the ground leaving a trail of
tears. Your family never given a
chance to kiss you goodbye.

May your journey take you to a
world of no fears, streams of love
and beautiful songs of the angels.
Unleashing all you were to be.

A piece of us all died a little that
day and we will never forget. You
remind us how fragile life can be
while we remain forever vigilant.

Rest in peace Brian.

Thursday, September 07, 2006

Gone Camping :)

Have a great weekend!!!

Poetry Thursday- "Blue"

I have a beautiful home in the mountains that we need to work on until Dave retires next summer. Every wall and ceiling in this house is baby blue...yuck! Even some of the carpets! I love color but not baby blue in my mountain home.

I wrote this very quickly to get it in before a relaxing camping trip. A poem on blue was fun because it's a color I like but not on my walls:) I decided to put a spin on it as if the house was a person.

Taking the Blues Away

My dreams of you are full of color but
when I visit you only give me blues.
Why are you so blue? Was their nothing
else that could cover your shame?

I fell in love with you slowly over time
trying to ignore your blues at every turn.
I vowed to cover you in a rainbow of
color with a simple brush of my hand.

I can see you in my imagination feeling
like you now belong. Glowing as the
sun shines her light on you, changing
you from night to day with softness.

Alas, I still see blues at every turn but
hope is in the air. I'm seeing glimpses
of color beginning to appear, your blues
will soon be a distant memory.

Wednesday, September 06, 2006

One Word

I found this at Becca's and it's a writing exercise from first Draft. I'm in the mood :)

Yourself: Encourager
Your partner: Dependable
Your hair:

Your Mother: Strong
Your Father:

Your favorite Item: Computer
Your dream last night: Forgotten
Your favorite Drink: Coffee
Your Dream Home: Mountains
The Room You Are In:

Your fear: Suffering
Where you Want to be in Ten Years?: Alive
Who you hung out with last night:

What You're Not: Shy
Your Best Friend: Giver
One of Your Wish List Items:

Your Gender: WOMAN
The Last Thing You Did: Workout
What You Are Wearing: Shift
Your favorite weather: Temperate
Your favorite Book?: Autobiographies
Last thing you ate?: Protein
Your Life:

Your mood: excited
The last person you talked to on the phone: Daughter
Who are you thinking about right now?: Bloggers

Tuesday, September 05, 2006

Self Portrait Challenge- "With Someone"

September is "with someone" month - that means you must include someone else in your self portrait. Someone meaningful to your life or to the moment or to a specific event that you wish to document. Do you have a special relationship with someone?Is there someone in your life that makes you feel as if your life is the pinnacle of living?How do you feel when this person walks in to the room?

My Grandbaby

I was told I would never see my children graduate high school, much less get married and have children. I have been given the gift of time and every time I look into these eyes I remember the value of each moment in my life. When he visits I am in his face and constantly kissing, touching, talking and holding him. I need him to remember me, and as I write in my blog it is him I am writing for. My heart fills with such joy when I see him that I'm sure he feels my soul touching his. It's not about how often I see him or what I can't do with him, but I'm alive to love him. Our connection is fierce and will extend beyond time. I love you TK!

Monday, September 04, 2006

One Deep Breath- "Solitude Haiga"

"wabi-sabi" In general, the meaning implies beauty in imperfection, impermanance, and incompleteness. (see Wiki Wiki Web) It also infers a sense of solitude. See others here

Saturday, September 02, 2006

Q & A for Labor Day

I wanted to take a minute of a relaxing weekend to answer questions I have been asked in recent emails.

1. Why do you blog? This question has come from many friends and family who do not blog. It's very odd that many friends and family read my blog but never comment or mention what I have written. I know it's not the content but more of a non -understanding of this wonderful world of blogs. I blog to express my feelings, creativity and struggles. I hope my grandchildren will learn someday who I really am since I'm moving away, by having my blog. I feel more productive being able to reach out, support, laugh, love, hug, create, inspire and cry with these amazing people. I receive love, support, encouragement and validation in return. It gives me another great motivation to continue my fight.

2. How is the ALS Advocacy Community going? I have made two life long friends that share this horrid illness. We can share the funny stuff, like how our husbands dress us and how we eat. Most importantly we hold each other up and share our discoveries. I even learned about a next step I can take, when ready, to keep me walking longer (a pump in my side putting a drug directly in my spine). I was also able to share drugs that can offer a better quality of life and my 16yrs to add to their hope :)

3. How can Dave retire at 50? When I was working I refused "disability Ins." because it was too much money. Clerical error (God) gave it to me anyway and I never noticed. I get 65% of my GOOD salary until the age of sixty five. Dave sold his house and paid off mine and we bought our dream retirement home. We can sell mine and pay down the new one when he turns 50, living on my disability and his retirement with medical. ALS and wanting to be together for as long as possible motivated the plan. Less income but more time :)

I have a very creative friend named Sheryl who has had me help her create her 1st blog...WooHoo! A convert :) I hope she loves it as much as I do! Check her out at She is 40ish and has four kids, she is joining many of the clubs I belong to so you will see her as "Tea Time."

Friday, September 01, 2006

Meet Hubby's Daughters Family

I thought with the holiday weekend coming upon us I would introduce you to Dave's daughters family. This is Jolene, Scott, Ethan and little Dimitri in their latest family photo. They live in the state of Washington. Labor Day reminds me of back to school and since it's Ethan's 1st year of kindergarten and his mom and dad are starting back to college, I'd introduce you. Jolene will soon be 24 (I hope that's right) and while rearing two boys she is in her last year at Washington State University. Her husband Scott got his degree in the Navy, is now out of the Navy working at a large company and going for his master's degree. I don't know how they do it all. You can see why Dave is such a proud papa :) She is her father's daughter.
Jolene is a great cook and can stretch a buck farther than anyone I've ever known. It's a good thing when you love to shop, have two growing boys and a new house. Ethan is five now and has grown to love sports like his daddy and they all enjoy going to Mariner & Seahawk games. Little Dimitri is 17mos old (I think I'm at least close) and sweet tempered with a cute infectious laugh. He does suffer from asthma but such a trooper when getting breathing treatments. Great little family!