Sunday Scribbling- My Two Cents

I was recently asked to participate in a ALS Advocacy Community online. After reading the profiles of patients and caregivers I was outraged! ALS does not get much money for research because the majority of patients die in 1-3 years, yet 1 in 1000 will be diagnosed in the world. When a family member dies a lot of families give up the fight for the cure, but not all. I have had a slow progression and have learned a lot about ALS and the medical community. I never realized how much I had learned until I read of their pain and suffering.

Neurologists are going to get my two cents worth today. They are good at diagnosis and things they can fix through surgery but stink at helping ALS. They only see you on a "as needed basis" and for me that is once a year. Many who progress swiftly are left to their regular doctors who know very little about ALS and are left to suffer. Neurologists , in my opinion, wash their hands of ALS because they cannot fix it. These patients have side affects and don't know they can control them with drugs giving them a better quality of life. Better quality of life helps with the will to live and hope. I would be in agony with muscle cramps, wear diapers, drool and be in a wheelchair if not for the help of drugs. Their family doctors just give them a pity look and try to make them "comfortable."They are not given hope they are given time frames.

I was told I had 3-4 yrs to live, 16yrs ago. I had a family doctor that tried to say "I'm sorry but it looks like it's finally affecting your lungs" three times, which is the beginning of the end. I have gone home many times with the attitude of preparing to die because of a well intentioned doctor. I demanded a lung function test every time and every time it was allergies. I joined a drug trial and learned a lot about ALS and had great care for those two years because I was able bodied enough to get in. Not all ALS patients are able bodied enough to get in a trial. There are ALS clinics but only a small number have access to them because they don't live near big cities.

I'm outraged that there is needless suffering caused by doctors who won't take the time to do a little research, call the experts or help their patients live a better quality of life for as long as they can. They are doped up and sent on their way not understanding what's happening. I hope I can a least help one person in this new online community to have hope and not suffer. It's not easy asking questions of strangers online much less one who has made it in the 1% group of people with ALS. Doctors need to step up!

I'm way behind on my blogging and I can't wait to see other entries. The heat wave is over and I can get back to the gym :)

Poetry Thursday- Food

Haiku Poetry

Just as I get to a time in my life where food can be a wonderful adventure and I can afford to try different things, I don't want to. I can no longer cook and hubby has enough to do, so it has become a pain. Eating out is embarrassing because forks and glasses are too heavy, I'm messy and have to have food cut, I easily choke and people stare. I drink coffee and soup with a straw, they really like that one :) I don't mind the curiosity and smiles but I do mind how I feel when I go out...it's just not as fun. I'm a lady and eating out makes me feel five years old. One day I will be on a feeding tube so my lost love for eating will be life's way of preparation. Can you see me craving a t-bone...I'll have mine pureed. It all works out in the end.

Long Lost Love

Breast milk nourished me
bonding with a love of food
happy, full, content

Childhood cravings
food is trial and error
substitute for love

Teenage angst begins
fat feeds my anxiety
acne is pay back

Twenties go too fast
married, babies, fast food blues
experiments gone wrong

Thirties life changes
food becomes laborious chore
eating is a bore

Forties life is good
food is just fuel for muscles
precious energy

The Round Robin Photo Challenge-"Ye Ole Watering Hole"

Maryanne at http://insidethegildedcage.blogspot.com/ wanted us to share photos our favorite watering holes.

This is Dave and I sitting in the backyard of our rented cottage, watching the sunrise. Kauai is our favorite place to visit and cool off, with the ocean breeze and the best fruit smoothies. We would have moved there if we could have afforded it but we will have to be satisfied by frequent visits instead.

Best place to get a margarita and cool off in Cabo. Don't try and drink & swim...may need a lifeguard.
When I was a single mom and my kids were with the ex, my gal pals and I would have a yearly girls weekend escape. This is a restaurant near our spa resort in Arizona. I don't drink since my diagnosis because I already walk like a drunk...can you imagine me tipsy? I still loved just taking time being one of the girls...relaxing at the pool...massages...ahhhh!

Visit other photos of favorite watering holes here

One Deep Breath- "Perspective" Haiku

Take a close look at a person, an object or an event. Then try to look at the same thing from another perspective. Interpret perspective in the literal sense (spatially) or metaphorically.Then write TWO haiku about your chosen topic, each from a different perspective.


Flitting like a sprite
hovering, searching for fuel
nectar of the bloom

Constantly moving
searching for satisfaction
never finding home

Find other perspectives Here

Self Portrait Challenge- As a ? Week 4

WOMAN AS A
HUMMINGBIRD

We had a wind storm with our heat wave recently and it broke a few of our gladiolas. We have too many to count and every color you can imagine. Our backyard has no need for hummingbird feeders because we have many tasty flowers for them to feed on. We get so many in our yard it's like watching a ballet. They are such happy little birds as they zip from flower to flower humming with their wings.

I feel their joy of living in the moment, zipping through life, enjoying all that life has to offer. Seeking out the beauty and fragrance in their little garden of eden.

Sunday Scribblings - Theft

I could write about the time I stole candy from a grocery store and mom had laryngitis, so I was spared the yelling. I was, however, given the evil glare and humiliated with a tearful apology to the store manager. No, I won't write about that, because I learned not to take what was not mine.

I should write about the obscene phone caller who said he had my mom and would kill her, if I would not let the man outside in to rape me. He didn't have my mom and there was no one outside. He was later arrested, but my view of a safe world at 12 was stolen. No I won't write about that, because I learned to be vigilant and that trust must be earned.

I might have written about my fairytale dreams stolen by addiction and a man who will haunt my nightmares as long as I live. No, I won't write about that, because I learned courage and strength.

I thought about writing how the ocean stole my mother's young life at 44...about cancer taking the life of my favorite aunt and cherished grandma...about my grandfather's mind, stolen piece by piece by dementia until he died as a homeless man in his own home. Or I could write about my only brother taken away from his family by his addictions. Or about the ALS that will someday take my life. No I won't write about any of those, because I learned life is a precious gift... that God has a plan for each of us.

What I really want to write about is the loss of mankind and the security of the future for our children. War, illness, corrupt governments and global warming have never made me feel more helpless. I have learned many things in my darkest hours, but what of the innocents who will be left to inherit the evil threatening this planet? Will they have learned to be vigilant, strong and courageous? To grow in faith, reaching out to others in need? We can teach these things by example and not give up on the world crumbling around us. But will these lessons be learned in time?

"Never doubt that a small group of thoughtful, concerned citizens can change the world. Indeed, it is the only thing that ever has." -----Margaret Mead

When it Rains it pours

Seems like the whole world is having a hard time right now. Israel is being forced into war, Indonesia has had another tsunami and seven bombs hit commuter trains in India. Lets also not forget Rwanda and other regions that are dying from aids and poverty. I'm thinking my week was a cake walk.

We are on day six of triple degree heat and my car lost its air conditioning. ALS and heat just don't mix so I am homebound. Dave got a tooth infection which made him sick, so they pacified him with antibiotics until they could do a root canal. A month from when he called. We have a wedding out back next month (my daughter's) and the lawn is dying, so Dave wants to put in a new one, but I'm thinking green spray paint would do the trick cheaper. Timing was poor for all this stuff to happen, because a physical turned up suspicious findings and Dave was sent for a colonoscopy. He was not a happy camper and wanted to blow it off , but I needed him to go. He commutes fours hours a day and the day he was to start flushing his system for his procedure his car broke down. Towing his car to a mechanic was big bucks and the mechanic can't even get to it for another week.

We had no idea the shape Dave would be in after his procedure, but I was to drive him there and home in my car. Three hours after the procedure a "pink lady" says to me "you can bring the car around honey, Dave is ready". I'm thinking why can't Dave walk to the car? I start to walk outside and 105 degrees slaps me upside the head. Four rows later I'm at the car, but it's locked ( my hands can drive, but my fingers can't unlock the doors). I never lock my car and Dave locked it thinking he would be unlocking it. I'm looking around for an able bodied passer by, while wearing my "I need assistance look" face. A man appeared asking if I needed help (angels are always near). The heat was getting to me but I managed a huge yes please and a smile. He opened my doors, put my book and walker in the back, rolled down the window and said "go ahead turn on your air its really hot in there." I said, looking like a total idiot, "it's broken" and he gave me a look that was very clear, it was a "what the hell are you thinking?" look. He said "are you going to be ok?" I said "sure, in my best convincing voice, as I thanked him profusely. Everything in the car was too hot to touch so I sat there thinking, now what?

Dave suddenly appeared at the car with a nurse (another angel), but was completely out of it. The nurse got us in, buckled me up asking "you two going to be ok? With that same look in her eye as the other man. Dave said "wull be ust fine." He was chatting away informing me everything was clear, as I was trying to figure out how to get chatty kathy home. I needed Dave to put the car in reverse because the gear stick was too hot (my hands have very little muscle padding which makes them sensitive to heat and cold). I had to talk him through it and keep him awake until we left the lot. I got him home in one piece, amazed at what little thought we put into this and thankful for God's earthly angels :)

Through being disabled I have been shown the good in people and I pray everyday that it is that inherent goodness that will save the day.

Poetry Thursday- Sex

This week seemed to really stump me because I was a tad uncomfortable. I'm no prude, but doing it and writing it in poetry form, were two different things. I was actually embarrassed and for people who know me, that would make them laugh. I think it's because most of the people who might read it don't know me. I wrote one anyway and stepped out of my safe place. I even used shape poetry for the first time, showing a climax without having to really spell it out. LOL

MARRIED SEX

Married
day to day routine
speaking with our eyes
never knowing quite when
a simple brush of bended knee
knowing touches, fanning flames
the dance begins, keeping in rhythm
soaring together like wings on a dove
holding still, not wanting an ending
breathing slows, butterfly kisses
look of contentment reflected
nothing needs to be said
time to end the day
happily

I did not intend this to look like a breast...oh dear! LOL To read much better poets go here

Self Portrait Challenge- As a ? Week 3

Woman Loved

What did you want to be when you grew up? In my girlhood I wanted to be a mommy and have lots of babies. As a teenager I want a prince on a horse to sweep me off my feet, like a dime store novel. In my twenties I learned having kids meant I had to do it with a job. It was hard and my prince (ex-husband) turned into a toad. I was left broken and disillusioned. In my thirties I grew strong and happy without the love of a man. In my forties I was given the gift of real love. He rode in on my computer screen and swept me away. He loves me knowing what lies ahead and never looks back.

One Deep Breath- Urban Haiku & Haiga

Reflections of sky
hiding beauty from the eye
mirrors of sadness

"Haiga are abbreviated paintings inspired by haiku... The term haiga literally means "haiku painting": "hai" comes from haiku and "ga" is the word for painting. In a haiga the poem does not simply explain the painting nor does the painting illustrate the poem. Instead each adds layers of meaning to the other.

I did some butterfly photoshop art and wrote a haiku. I did this because I missed the meaning the first time around :)

Visit other Urban Haiku here

Sunday Scribblings - Baggage

We all come with baggage, wether young or old. Some baggage we have been given, others we choose and some people have more than others. Baggage can be old and tattered from dragging it out too often. Some still look good from being kept up in the rafters, reminders of journeys gone by. It remains with us until we leave this world, where it has already been claimed.

The baggage of my youth was passed down to me by a "checked out" father and an abusive mother. As I grew into a young woman with low self-esteem, I stared to choose my baggage. I left home to the arms of a drug addicted, verbally abusive man. I made a choice to stay and have two children. I then choose to leave, putting my children through a bad divorce, passing on some of the pieces of baggage I had chosen.

I spent many years trying to tape up the tattered baggage, keeping it out of sight as if I had none at all. Life has an interesting way of finding new journeys for me to travel, needing one more piece to add to the mix. Funny how as the pieces grow larger, they fit perfectly inside one another, as if they were a set always meant to be. I looked at my baggage now and again, as they sat gathering cobwebs. I liked whom I had become, baggage and all, thinking my journey’s had come to an end.

I learned our journey is never done, because just as I had accepted my fate, I was sent an angel. When I met Dave, I told myself not to love him. My baggage at 42 years old would never fit into his already full closet. This is selfish behavior . . . stop it! I never was a good listener and fell in love. Marriage was out of the question, but he seemed so sure. I had him get my baggage down from the rafters, opening each piece before him. I left no pockets unchecked, no zippers unzipped. He still wanted me, baggage and all.

Dave and I have rafters full of baggage and uncertainty of the future. We also have grown and are stronger because of it. We are proud of our hodge podge collection of baggage, because without it we would not be here together. As we take each others hand, awaiting our next journey. The pieces still come out, going around the carousel waiting to be claimed.


Check out other scribblings on baggage here

Moving Past a Loss

I saw this car and thought why not? Anything is better than my "car from hell" in the garage. I only drive to and from the gym, three days a week (10 min.). My gym is on top of a hill and as I leave, I'm going downhill into a 4 way hwy intersection. My air conditioning is out, I'm always in a wet suit and don't own a cell phone (not good signals up here).

Last week as I headed out from the gym, going down that hill in triple degree heat my breaks went out! As I went to hit them again, they worked before I even touched the pedal. It did it again, but stopped at the bottom. I was shaking so badly as I sat there at that light. I made my right turn to go home, stuck to the side of the road until I reached a parking lot. I tested the brakes in various ways and they seemed fine. I drove it home with no problems. We got it fixed and then a few days later we discovered a coolant leak in the heater area. Dave re-routed hoses to stop it from leaking and over heating. No air and now no heater for winter. We decided to trade her in when Dave retires because even though I can drive, my disability makes it too dangerous to drive alone any longer. ALS people can't handle hot or cold weather at all. I must grieve the loss of one more ability and accept dependence on driving. We are getting a home gym and I will finish out the summer at the gym on cooler days. Part of me is sad, while another part is relieved. I will miss my friends and another freedom. I knew this was coming, but I must be safe and focus on what I can do, not what I can't :)

Deb at http://debrichardson.blogspot.com/ Red Shoes Rambling inspired me with her red boots. I know she would love the idea for my ideal new car. LOL We will turn all our vehicles in for one safe, new, 4 wheel drive, low gas mileage, retirement truck! WooHoo! One vehicle to think about, pay for and insure :)

Poetry Thursday- Humor in Poetry

I Know the Mirrors
Janice Townley Moore

I know the mirrors
that are friends,
the ones in semi-darkness that hide
the hard crease of jowl,
or the ones with the correct distance
to fade the barbed wire fence
above the lips. But skin breaks
like dry river beds.
Rooms must become darker,
distance greater.
I grope for a solution,
knowing that no woman
ever looked better with a beard.

This wonderful book made me laugh and made me cry. It is full of the wisdom of aging. I laughed out loud at "barbed wire fence" because I'm developing my own special fence on my upper lip. lol

Check out others here

The Round Robin Photo Challenge-"Americana"

Our next Challenge comes to us from Cosette of Pandora's Bazaar. I'll let her explain:

Since it's just in time for Independence Day, how about Americana, things dealing with American history, folklore, or geography, something considered to be wonderfully typical and unique to American culture. Brightest Blessings,Cosette

This is Yosemite and I'm blessed to live an hour away from the entrance to this magnificent park. We can go for lunch at the Awani hotel, soak in all of its beauty and be home for dinner. We have had a picnic right beside this stream on one visit and I managed to hike (with walker) to the bottom of these falls on another. I admit I wished I could have taken a cab back, but there was no road for a cab. What a blessing to be this close to my vision of "Americana."

Self Portrait Challenge- As a ? Week 2

A Free Spirit!

We have been on the road quite a bit lately and I've been watching the look on my dog's face as she hangs her head out the window. Taking in every smell, feeling the sun on her face and the wind in her fur. She is the happiest when she tries to soak it all in as life speeds by. My spirit connected with her at that moment, reminding me to take it all in :)

One Deep Breath- Haiku

Ritual


Praying for courage
faith in numbers holding on
innocent life lost

Sunday Scribblings - Hotel in Cabo

When I was forced into retirement at the ripe old age of twenty-nine, I swore I was going to make some great memories with my girls. I cashed in the trusty 401k and decided to take the girls on a trip to remember. The trip was a kid cruise to the Bahamas, swimming with the dolphins, Epcot and Disney World, all in one trip. You would think this would be a dream vacation, but it was a very hard trip for all of us. I was using a walker, the girls were still quite young and they were my only help. My brain kept forgetting I was disabled and so I did not think it through. We had fun times, but it was over shadowed by many stressful moments.

The next year we enlisted my ex sister-in-law to join us for a trip to Cabo San Lucas, Mexico. I was going to create a dream vacation even if it killed me. It was much easier doing the airport thing with help and the kids were more relaxed. The hotel looked like any other I had seen, it just had more tropical plants and red tile floors. We entered our very stark, but clean hotel room on the 4th floor and dropped all our bags on the beds. As we stepped out onto the balcony our jaws dropped and our eyes lit up. We had a room over looking a tropical pool with a "swim up bar" and beyond that a spectacular view of the ocean. Everything we wanted to see and do was right there. We shopped til we dropped. We ate great food, heard fabulous music and soaked up the sun at the pool sipping margaritas. Splashing in the surf the girls and their aunt got their hair braided and beaded right on the beach in front of the hotel. They looked like little mini Bo Dereks. I actually ran into a girlfriend with her family on the beach. You could have knocked me over with a feather, I was so shocked. What a small world it can be. My friends rented wave runners on the beach and we all got a ride. How many Mexicans does it take to hurl a disabled chick on a wave runner? The answer is four and they were very gentle. We thanked my friends for the treat of flying across the ocean and joined them for dinner on the beach. That night we learned a new dance craze called "The Macarena." The trip was going perfectly or so I had thought.

The last night I got Montezuma’s revenge and it was not pretty. I could not run to the potty and needed both ends attended to. I slept on the cool hard bathroom tiles that night and struggled getting home. Airplanes and their facilities were not easy access, especially when my walker was in the storage hold under the plane. I thought the kids had sunburned their heads because they kept scratching on the way home. After being home for a few days we started to undo the braids and discovered we had brought home hundreds of little souvenirs, lice. I even had it and I did not even get the dang braids. Never get your hair done by a vendor on a beach! Despite the sickness and bugs, we made great memories. I don’t mind that the best memories were of me puking in the potted plant while waiting for a cab to the airport. The way those men helped me on the wave runner trying not to touch me in the wrong places and me doing the Macarena.

Trying to squeeze a lifetime of memories on a vacation Big Bucks
Traveling with children Big Bucks
Memories made at home naturally Priceless!

To read other scribbles on hotels go here

One Deep Breath- Haiku & Haiga

HAIKU-Journey

Bali Hai sunset
wedding vows flow with the tide
love everlasting

In a haiga the poem does not simply explain the painting nor does the painting illustrate the poem.

A single person

can affect time in motion

one touch, reaching out

Poetry Thursday- Goddess

The prompt this week was to find the personal in your poetry and read it in an audio blog. I don't speak clearly so audio blog reading would take away from the poetry.


Goddess

I hear her speaking softly,
like a whisper in my ear.
beckoning my inner strength,
to comfort me, releasing fear.
Reminding me of the glorious gift
of time, never to be replaced.

She resides in my sacred temple,
nurturing my damaged soul.
Seeing a glorious creation of God,
tending to me in his garden.
Planting thoughts blooming with
hope, pulling weeds of self doubt.

My inner goddess adorns me
with garlands of peace and joy.
lighting the fire within to shine
brightly, lighting the way.
She knows he has a plan as she
prepares me for our journey.


I've been out of town, so I used one of my first poems I wrote for "Write Words Writing Club." I had to tweak it a bit to make it fresh.

Self Portrait Challenge- As a ?

WOMAN HOLDING ON

I am fascinated by hands. As my hands slowly get weaker I realize how precious they are. If I must loose the use of my body, I am grateful it's a slow process so I can really prepare and appreciate the smallest of movements. I can still grip a steering wheel to drive and yet I have no pinchers to pull up my pants, or button a shirt. I can't pick up my grandson, but I can hold him, touch him and hug him. I know I will someday only be able to love with my eyes, but that is still a powerful way to express love. To touch those we love in any way possible is worth living for. This is a portrait of me just savoring the joy of holding on.