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.