A Republican's Worst Nightmare

Election season makes me pissy. I've heard so much rhetoric about "Obamacare"and "job creators" that I can't seem to fit in with any political party, but especially the Republican party.

I get social security benefits, and medicare, which last time I checked are government programs. My Bad. These programs cost taxpayer money, and something needs to be done to keep these programs from going bankrupt. So, by extension, taxpayers are helping me, and they are pissed. They maybe wonder how a disabled person like myself can walk a few miles a day, take a nice vacation with her family, and get government benefits.


Two things.  First, my family pays taxes, even on my benefits. Secondly, I challenge anyone to have two brain surgeries(with more potentially on the way) and have the capacity to get through a day's work. I sometimes think the strange hours I worked in television contributed to my illness. I worked late nights, early mornings, 12-hour shifts, with constant audio-visual stimuli. No wonder I broke down.

I understand the Republican wish to reign in wasteful spending, but the party loses me, when it comes to its stances on social programs, and the role of government. When I was a college kid, and had the world ahead of me, I never envisioned needing any help.

But then, as a 32-year-old working mom, I began having seizures, which I would later find out were triggered by a brain tumor, a cancerous one, for which I am still undergoing chemotherapy. I need help-- to drive to the store, see friends, and get to doctor appointments.

Should I be ashamed that I need help?

Time will tell, but I don't think I'll get much, if Republicans are voted back into office.

summer night

The open window
allows a warm comfortable breeze
to caress my skin.

The natural sound outside
of birds singing
promotes sleep
when many nights, a good rest alludes me.

Like water in the desert
Like ice cream to the child
such a feeling I'm experiencing
only in this moment.
too perfect to return again.

What if?????

What if the boy I had a crush on asked me out?
What if I didn't have Turner Syndrome?
What if I kept my opinions to myself?
What if I could drive to anywhere?
What if I had a high-profile job?
What if I could undo any hurt I have caused others?

I know it's a waste of energy, but it's human to think this way; If only "this"were different, than things would be better.

But it is what it is.  Oh! how I hate that phrase!  To me it suggests that one should not strive for change, but just suck it up. I would like to believe that change is possible, and even a good thing.  I don't want to just accept, because, sometimes in the poker game of life, many hands are shitty.

I have to count on my shitty hand winning.

Traveling Jones's

It seemed right after my son graduated 8th grade, we went trekking. First stop--a cruise of  Hawaii.


We started in Honolulu with a tour of the Arizona Memorial, a must-see. The tour started with a very emotional movie, with actual footage of the attack. Even my son was moved.

The Arizona Memorial, from a distance.

A wall in memory of those killed in the attack.

The U.S.S. Missouri

Next stop was Maui. While there, my husband Bruce took  us for a looong walk to find the shirt shop, Hilo Hattie. This was despite the fact we passed many decent souvenir shops. We all got tired of walking, but finally found the store, made some purchases, and yelled at Bruce for the goose chase. Family Fun. We also took a boat trip for some swimming and snorkeling.  I don't snorkel, because I don't know how to breath properly with the mask and tube, but I wanted to go into the water anyway, so I did with my suit and cover-up. I was surprised that I was not provided with a life jacket, but "noodles" instead. I managed to swallow lots of salty water and get half an ocean's worth into my eyes. I very quickly climbed back aboard, as did my son.

The ride back to the dock was nasty, as we were against the wind and current. One man desperately tried and succeeded not to barf.  I don't get seasick, but got so wet, I felt like a crew member of "The Deadliest Catch".

(above) Turtles at a Maui Aquarium
(below) a beach we stopped after a long walk around Maui

These next six are from a Luau we went to in Maui.  My mother -in-law liked the show, but not the food.

T

The next port of call found us on the Big Island. On one side is Hilo, where it rained a warm tropical rain, as Bruce, his mom, and I took a volcano and coffee bus tour. Bruce and I got out to walk through a rain forest on a trial circling one of the volcanoes, not far off, we felt our way through a lava tube. I say we felt our way, because I was a dumb ass, and didn't bring my regular glasses, I wore my sunglasses erroneously thinking it would be sunny. Well, it wasn't, especially in the cave.

inside the lava tube.

 At crater's edge.

 The Mister at a viewpoint.

More lava tube.

Next was a lunch featuring a delicious  purple sweet potato salad situated next to an out of the way art gallery, were we had wine and browsed, and purchased a gift for the neighbor girl, who watched the cat while we were gone.

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Donkey balls=Chocolate covered macadamia nuts.mmmmmmm!

Austin, our son, not having so much fun on the boat.

Kauai, the final stop

One should not miss Wiamea Canyon!

See?

From left to right:  Kim, my sister-in-law's partner, me getting tired of something, my sister-in-law Linda and my mother-in-law Marilyn.

Kauai is my favorite of the islands. The colors are beautiful.  Though I'm afraid of heights, as is Bruce, we took a helicopter trip once to get an ariel view of the canyons and waterfalls. We didn't go up in a copter this trip, but our son did with his aunts and liked it. The nice part of cruising Hawaii is that there are many opportunities to get off the boat and explore the islands. As I get older, I'm getting so I can't stand crowds, so I'm not a big fan of cruising, but we got some major family time. Nice, because my mother-in-law can't travel comfortably anymore.

After lots of family time, Bruce and I had some alone time in California wine country, after the July 4th holiday,  while our son hung out with his cousin at my sister's beach house. We stayed at a Best Western bed and breakfast, a very nice change from sleeping in twin beds on the cruise ship. The following photos are out of sequence.

 Sparkling wine tasting for a gift for my sister

This was the best shot I got of the grapes that go into the wines. This was taken at the first winery we visited on our wine tour, Arger-Martucci.

 

 The wines.

 The brothers running the shop.

 A not-so-nice shot of my hand. I must have had too much Cabernet.

Our time in California ended with sparkling wine tasting.We managed to find a place from where we could ship.

Overall, I had a great summer, and my oncologist let me skip chemo for the month of June. Yay! I have no complaints.

Faces of Turner Syndrome

some secrets should stay secrets.

I have Turner Syndrome. If you don't know what it is, it's a genetic disorder due to a missing chromosome. For more info, try searching the Internet. Having this disorder makes me who I am, from my short stature, to being barren. Yet, I feel uncomfortable advertising it, because I don't want to be thought of as a syndrome, but as a person, but even when I look up TS on the Internet, I am shocked by what I see and read.

Example:  I found a piece on You Tube called "The Faces of Turner Syndrome". The video shows various women and girls saying things like, "I'm your teacher",  "I'm your nurse," etcetera. The beginning and end slogan is a young girl saying, "I'm like you, but I'm NOT like you." Exactly!  But should I let the public think I'm just like everyone else? In doing research for the book I'm writing I found out t,hat many girls with TS are miscarried, but yet I'm here. To hell with Survival of the fittest! Sometimes the weakest links survive.

But because I see so many doctors and I take so many medications, I have had to let the secret out. For example, a good doctor will want to know what medications a patient is taking, and the reason for taking it. Sometimes I am asked if I'm pregnant, or wishing to become pregnant, and I have to read chapter and verse on Turner Syndrome. There are a few doctors who don't know what the syndrome is, but that is a subject for another post.

I liked the Faces of Turner Syndrome video enough that I posted it on my Facebook page, because some of my FB friends are in the TS community. Nevertheless, in the future, I think I'll be quiet about it. Most people like to use FB for lighter banter.

moving on

As I write this, it is a Sunday. In two-days time, my beloved parents will move out of what was supposed to be their retirement home, and move IN to a retirement village, where their meals will be provided for them, and transportation provided, as needed.

This is all mostly good. Mom and dad will still  be living together, but the move was mostly prompted by my dad's declining health, and my mom's increasing lack of ability to take care of him. He has dementia, diabetes, glaucoma, and a history of heart disease. My mother has been the one to remind him to take his medicine, and take his verbal abuse, when symptoms make him frustrated. The house they live in now works fine for folks with physical disabilities, but not so much for people with  these kinds of issues.

I credit my dad for wanting me to be smart, go to college and work. He also passed on to me his love for music.  However, he cannot always remember that I have cancer, or how I am being treated, and that makes me sad. They will be closer to me, and my mother still plans on driving me places that Bruce can't.

I'm 45, but I still need both my parents, and love them.