Heath Ledger, Michael Jackson, They Just Wanted Rest

Once again, as the media did with Heath Ledger's prescription medicine overdose and subsequent death, the drugs Oxcontin and Ambien will likely be villainized. Before the media and medical "experts" lash into these strong drugs, let me remind you that they are life-saving drugs for more people than they are abused drugs and murderers.

Any drug can kill when misused.

When MS Steals Your Memories

Since I have decided to share my photo albums with you, and have, over the past few years, been sending to those in the photos---their photos; I ran across a few people I didn't know, places I had never seen and the old "shot of an upside down fence or foot," but I got to thinking about the home I grew up in, my great aunt Vi's house, and the backyard I played in. There was a red ball that was stuck tightly between a forked limb. My brothers and I did all we could to dislodge it over the years, with no success.

That memory, my desire to share it with you (since, of course there is more to the ball story) reminded me of a photo I threw out. It was taken with the camera I had as a 6 year old, and was just a bunch of tree limbs/leaves. Now I know what that was---the ball, small and hidden in the tree. Gone now, except for my memories of it. What a shame, it took on a life of its own. My brain, like my aunt's is so full of memories that are clear and easily accessible. I love that about me and with MS it is one of my greatest fears---losing those memories. Alzheimers, so much can steal my memories, so I am a storyteller or a memory teller. Yes, that is my title.

I hoped to share all my stories with my family, nieces, nephews, but that will not happen. How sad for them. The live in the moment generation, have it now generation, why am I not happy generation...just damn sad.

White House Greets People who are Deaf, Blind

MONDAY, JUNE 29TH, 2009 AT 3:32 PM
"Still Thriving and Excelling Long After Helen Keller"
Posted by Kareem Dale
Another day at the White House, another chance for President Obama to make history for people with disabilities. And, he did just that.

On Friday, June 26, 2009, President Barack Obama became one of the very few sitting American Presidents to personally greet and welcome persons who are deaf-blind to the White House Oval Office.

Check out the WH Blog http://www.whitehouse.gov/

Presidential Church at Camp David

The longer you live, I'll tell ya, the things you never knew. There is a church for presidents at Camp David? I'll be a wim wam willywopper.

Rants from the Chick with MS

Don't you love the latest trick of deception being employed by drug companies? On TV commercials: Our drug may have all these horrible side effects, but so do all your other choices, so just choose us! GIMME A BREAK

And HOW do they get away with (and this is down by ins. companies, FDA approved foods, exercise and weight loss products---to name a few) circumventing the law citizens insisted upon, by putting required info such as additional costs/side effects/truths missing from the main menu-"These are just actors," in such tiny print no human can read it, especially the elderly and disabled??
HOW is that okay? WHERE is oversight and WHO is in charge around here?

"You must tell the truth and nothing but the truth, so help you God." What's to stop a liar from rationalizing that since he/she doesn't BELIEVE in God or doesn't believe God has been helping or would help a killer, to lie at will? Like Judge Judy says, "He said he would pay you back when he got a job. He never got a job so he owes you nothing. Get out." GIMME A BREAK

Am I ranting today? Uh-huh. I mostly take stuff of the goo we call life in stride, but when do we stand up (those who can stand; ok, cheap shot, just a saying) and write a letter or email to our elected officials (not that they ever actually read them, that's what assistants are for) or join a march, make a phone call DO SOMETHING? I know, I know, Diane, we can only do so much. Diane, I do what I can. Diane, nothing will change. Diane, (and this is my favorite) YOU do it if you are upset ("UPSET" is that ever said to a man?) about it.

My partner has finished jumping through all the social security hoops, all her former job hoops, all her pension and insurance hoops, yes, that's great---BUT WHY? Is she a trained circus animal? We are human beings. Save the hoops for the Hula. Are there scammers out there? OF COURSE---HELLO and DUH. But as I always told my co-workers (we vetted the needy who would call for financial help with their utility bills and made payment plans with them) there are so many more who actually need the help, don't waste time on the few who are cheaters. Cheaters and scammers will have to live with themselves all their lives. As a people we are only as strong as our weakest link. If you have given money to someone who didn't really need it, then set a good example of honest behavior that day. (I did choose my words specifically for those who I knew were not poor or could really pay the bill, explaining how great a program we have to help a person like yourself from donation from others, some of whom barely get by but care for others, blah blah, ya know?)

My mother set my feelings about such weak links when I was not yet 5. Our red wagon was stolen. My brothers and I (I simply was allowed to follow behind, a thrill!) followed the wheel tracks through the snow straight to the thief's house and reclaimed our wagon.

We were proud of ourselves and trashing on the boy who stole it when our mom interrupted and said, " You should feel sorry for him, not mad at him. He must have needed it so much so that he had to steal it. Think how bad he must feel." That really sunk in and stayed with me to this day. I asked her in later years how she came to think that way and she said her father told her the story of his brother (or cousin, I'm not sure now, shrinking brain and all) jumping a train car and a man inside stole one of his shoes. My uncle (or cousin, lost brain cells and all) told the man to have the other one too. He could see the man's feet were raw and my uncle's were young and not worn by age yet.

This seemed like a good story. When my great aunt (Violet--102 now, kept utility receipts from 18--) gave me boxes of old photos and papers, one was a journal written by that uncle (I must get into all those papers again one day) and he was a good writer for a poor, out of work farm boy, he HAD jumped a train headed to California, hoping to find a job (gold/for many was fool's gold, and he details the man who he caught stealing his one shoe. Apparently the writing gene runs in my family. I bet now, I can scan those pages...hmmm (I'm still learning how to use our scanner before some new technology takes its place).

I digress. But, I hope you get what I mean. I don't want to crucify the "bad guys" out there, I just want them to put others before their own profit. Their profit, based on deception, is true "fool's gold."

Walking with MS and The Sundance Kid: Trying to Move an Atrophied Leg

Thursday we tried a shorted height to the walker. That change did ease my arm use, but I needed to turn back sooner. My helper, friend, former caregiver, Angie, and I discuss each walk after I collapse in my lift-chair.

We discuss and brainstorm what can be improved. There is always something new to try. Angie has become my Sundance Kid. She is 29, divorced with two beautiful, smart kids. I met her when I first hired her to be my private caregiver. Then we became friends and she would do anything for me. She really wants to see me walk again. We are in sync.

My idea of getting volunteers through Craig’s List was amazingly successful, but I had no idea how little time would be involved, too little for someone to drive to my assisted living facility and spend 5-10 minutes, then drive back, for a check that might bounce. I couldn’t take such kind people on my possible wild goose chase. Angie has faith in me. She is like a sweet angel gifted to me from the wild universe. We have goals, a plan of action, and there is no chance of failure because if I become stronger in any small way---I win. Already I feel stronger.

After visiting the bedridden, beautiful and brilliant woman with MS where I live, my resolve to continue on with my walking scheme was made stronger. Yes, a scheme indeed, my secret, crafty plan and scheme also means: “a representation of the astrological aspects of planets at a particular time.” (Merriam Webster) My blog name is Stellarlife, not stellar life, purposefully a new word which encompasses the grandeur of this state of being (LIFE) and the belief I hold with Carl Sagan, that we are the stuff that stars are made of. My astrological planet alignment is good for leg rising.

Thursday we lower the walker height and this felt better, but my stride was still not smooth. This was followed my various exercises after Angie left. Karenlee is still asleep and I am left alone to ponder what has just happened. My thoughts go back to 1990 and my diary entries: “Where will I be in 5 years? 10? Or 20?” All of my diaries or journals since ask this same question. Will I be bedridden? Able to speak in short breaths and barely turn my head? Still curious about the world, yet knowing I am not a part of it?

Friday we moved furniture around (and by “we” I mean Angie) until there was a length of wood floor to roll easier on. Fighting the rollator wheels was stopping my smooth strides each time, perhaps getting off the large area rug would help. Angie put ribbed socks on my slightly swollen feet, and off we went.

This time it was smoother on the wood floor, but my back betrayed me as it started to hunch and prevent my hips from lifting. I had to turn around sooner and getting over the edge of the rug in front of my landing strip was extremely difficult. Angie had to pull hard to lift my left leg over the rug and my heart was beating fast.

We decided next time, Monday, we will move out and back without turning around. I will begin sitting for hours with a pillow forcing my back into a more straight position. Before we begin I will do different stretching of my calves.

Angie is so positive and encouraging, always saying how well I did. I am more realistic---I did ok. The best thing happened Thursday night and I hope again tonight.

You see, some years ago my brain forgot how to walk. I sat in the lobby of a huge medical building and watched people walking to and fro. For an hour I watched, trying to allow my brain the chance to see what it was to do. I wrote on paper, “Right leg out, swing opposite arm…” and so on, then I carried the notes and used them with two canes. That was the only way I could walk in 2004. I would stop-action walking scenes on my TV, replay them in slow motion, over and over again.

Thursday night I dreamed that I was walking. It was so real that when I awoke I stood up and walked normally across the apt., then I woke up for real. But, the feeling remained. My brain is on board. It wants to join Angie and I! Often I have told it to think about walking again, but it balked, preferring puppies, flowers, sweet clouds…now? I believe it gets the message. The three of us will make the stars shine so bright that the firing of my synapses will pale in comparison.

Sweet dreams. NOOO I mean, Good Night dear brain, dream well.

Seattle Tile Fate Prevails

After our van, or bus as they call it here, dropped us off, we gazed around the huge complex. The International Water Fountain, the Space Needle, beautiful landscaping---where to begin? A man wearing a badge was coming our way and I stopped him to ask where the "Pavilion" was.

"You're right in front of it," he said, pointing towards a large building with glass doors and windows all around it.

"We are supposed to have a tile here," I explained as the man's face grimaced.

"Good luck. Many had to be moved after a remodel a few years ago and many are broken, unreadable." He shrugged his shoulders and my heart sank.

A few men who seemed to be ending or beginning their drug of choice were sitting around the roof, about four stories high, watching us and saying hi. I "hey"ed back.

Then I looked down and there were the engraved plaques next to the walkway, curving towards the building entrance. We all began looking at them. Yep, they were torn, chipped, broken, names, drawings, but somehow moving---somebody designed them, wanted to buy a lasting memorial to something or someone. It was actually quite touching. As I led the way, moving fast in my power chair with Karenlee and our friend, Angie bringing up the rear---the tiles were getting closer to the entrance and started looking better. Yes, there it was. Right where I would have chosen if I could have,

It was clean and clear, looked like it was just placed there moments ago. It was between two large rocks on the rise of grass behind it, rocks with engraved quotes from two of my favorite heroes and a rock away from a 9-11 tribute. How many thousands of people must have stood here over the years since our tile was placed. Fate, "...you have good fate," my MS doctor told me once.

Between Martin Luther King, Jr., and Anne Frank; We are forever honored. Check out the photos below. And what a beautiful, sunny, day in Seattle.

Photos Tile at Seattle Center

15 years Her Hair Darker, Mine Lighter

30th anniversary in Seattle, between Anne Frank and MLK Jr--Bright sun in our eyes.

"I believe that unarmed truth and unconditional love will have the final word in reality. That is why right, temporarily defeated, is stronger than evil triumphant.
Martin Luther King Jr.

Gift for 30 Years. Space Needle Here We Come

On our 15th anniversary we decided to get a studio portrait done. I joked with the photographer that we planned to have one taken every fifteen years. It WAS just a joke, but each year after this photo one of us was sick or too tired to get to a studio.

This year was our 30th anniversary and I was determined to get a picture, if only to compare. Now, when you have been together so long, finding a gift becomes harder and harder. On our 23rd anniversary---a very special, once-in-a-lifetime day since it is our 23rd on the 23rd; I hold such happenings as significant, like my 31st birthday only hit the same date as my age. (31)

Anyway, so for our 23rd I purchased a tile to be placed for a remodel of the Seattle Center, where the Space Needle is, the professional sports arena, a science and art museum, a pavilion Seattle was building. We got a certificate, its location among hundreds, and each year we planned to visit it.

But, again each year one of us was too sick or tired. When we both needed wheelchairs, getting there became an issue. ANYHOO, this year we decided to kill 2 birds with one tile. A friend agreed to push Karenlee in her chair and our assisted living facility/retirement home provided the ride. Off we went, map in hand, none of us having been to the Seattle Center in years. (It is a big place.) Would our tile be visible? Would it be torn and worn? It was to be engraved with our names and date we became a forever-couple. Perhaps some anti-gay person ruined it or spray painted it. Would it be by a restroom or trash can? We set our expectations low, but at least we would know, and our friend would take our photo.

We could never have dreamed what we actually found, or didn't find...

TO BE CONTINUED

Share Your Michael Jackson Memories

I am 52, I can barely say the words, "Michael Jackson is dead at 50."

First slow dance my partner and I danced to-"Rock with You." As a kid my cousin and I built a band around the Jackson 5 hits. "I want "You Back," "Ben," all the greats. And to get through my first MRI that diagnosed my multiple sclerosis, I sang the entire Thriller album to calm me and pass the time. His moonwalk on the TV special had me holding my breath; I'll never forget that night. I'll never forget Michael Jackson.

"There comes a time, when we hear a certain call When the world must come together as one There are people dying, and it's time to lend a hand.To life the greatest gift of all We can't go on, pretending day by day That someone somewhere will soon make a change We are all part of God's great big family And the truth, you know that love is all we need
We are the world, we are the children We are the ones who make a brighter day so let's start giving There's a choice we're making We're saving our own lives It's true, we'll make a better day just you and me.
Send them your heart, so they'll know that someone cares
And their lives will be stronger and free As God has shown us, by turning stones to bread.So that we all must lend a helping hand.We are the world......When you're down and out There seems no hope at all
But if you just believe there's no way we can fall
Well, well, well, well, let's realise That a change can only come
When we stand together as one We are the world......"

Baby Brothers, Pink Cadillac Mistress

My brothers. They had a father in their life for 7 years, then he slowly trickled out. Their father moved on to his mistress and later wife and their children. He lived all my childhood just blocks from my home, and I never knew---never saw him either, except for one Christmas. He gave me a cheap, plastic pin ball toy. When he left I threw it out. I was about 3.



My mother fell in love with my sperm donor, er, father, when they both lived on farms down dirt roads in Indiana. The war took him away. Mom told me when I was in my 40s that he went AWOL and spent the war in prison. But, after his return my mom just wasn't enough. Farm girl boring---pink convertible Cadillac woman became his next wife. He died at 56.

Diary June 24 Trying to Beat MS Leg Atrophy Continues

Today may have seemed like a loser, but we learned something important: my walker was set at a bad height for me. My shoulder is still "acting up" and putting my weight on it hurts. We are very excited for tomorrow. Bad news: one of my good caregivers is quitting in 2 weeks. Starting over from scratch is always draining. I need to draw strength from somewhere to not let this get to me. Where is fearless-Diane? I see my reflection, but I don't see her.

Nixon: Abortion OK If, You Know--Black Rape of White

Richard Nixon just keeps coming up with a new reason to hate him. His latest taped revelation--a discussion about abortion under such a horrible thing as a mixed race (black and white) baby; apparently even God sees that as just wrong. And he tells his GOP peeps to look for an attractive woman for a republican post since people seem to like that kind of candidate, "...not that I'm for women..." Please, burn the tapes, we get him and his kind. Or do young Republicans need reminders of why their party is sinking? Oh, heck, let's tape all the GOP in private conversation and get it over with.

I forget, what am I supposed to be learning from the learning channel? Oh right---heterosexual marriage, being fruitful according to God, that is what will preserve our society. Excuse me a sec.
hahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahaahhhh

If YOUR employee, or spouse, took off without telling you where they were...FIRE HIM. Where does an elected official get off with this disregard and disrespect for the people who voted for him? Wait...how many weeks of vacation did GWBush take? GIMME A BREAK

N.Korea is thinking about blowing us off the map. O---K---EEEE, and he wants to start with the Aloha state. Uh-huh.

Nixon would have LOVED Sarah Palin. The more things change the more they stay the same. Now that sentence makes no sense. Oh well, nothing makes much sense these days. (Citi Bank is giving PAY RAISES???) Pass me the barf bag and a yoga mat.

Beowulf of Eberling, Good Dog--Bad Person

This is my first dog, Wolf. He was an AKA champion line and I named him Beowulf of Eberling. He was really a family dog, but my brothers were moving on. When my oldest brother got his first car with a rumble seat, Mom made a huge plate of hamburgers. Rare for her to cook, but we were all very excited to see the car. It arrived. We ran out. Wolf ate all the hamburgers that had been left in the center of the dining room table.

Mom sort of got him for protection; I was home alone a bit. One night a burglar broke in our kitchen. Wolf jumped through the glass door bottom, hopped over the fence, Mom spent so much money to keep such a big dog inside his yard, and came back with blood on his teeth. He hopped back over the fence when he returned.

********** ************

It is 2am and I am haunted by the above post. I just learned to scan but not how to tag the photos, so I'm just sharing my photo albums with you and Wolf came up. The truth is that he was a good dog I made bad. I was 9 years old and emotionally tormented by my brothers (7&8 years older than me.); they never had a kind word to say to me or about me. My mother did not stick up for me, probably out of guilt that they had no father around. I felt powerless so I used my pets to feel some power. I teased Wolf, scared him, walked him and would get him worked up over squirrels and other people. He became aggressive. Aunt Vi's longtime companion's mother stayed with me while Mom worked during summer or school vacations, and she would hit Wolf and push his nose in his indoor accidents. (How it was done in her day) That made Wolf eat his own poop outside. He also ate my crayons---making for colorful poop. He was an emotional wreck like me. (Now it is a duh.) After he started chasing neighborhood kids, Mom had him put to sleep. Our large yard was always a mess. Mom and I were cluelesss about raising a dog or cat or bird. A dark chapter in my life, when my brothers were late teens and early twenties, especially after it was only she and I. Only when I reached my thirties did I realize that I was just a kid. My mom was the adult. That fact didn't hit me for a very long time and I beat myself up over what I saw as horrible failures on my part. I hope all my pets forgive me.

Las Vegas Comes to a Retirement Community

"Sweet Adelines International is a highly respected worldwide organization of women singers committed to advancing the musical art form of barbershop harmony through education and performance. " --from their web site

Expecting a barber shop quartet, instead we were treated on Father's Day to a group of 4 women singing favorites like "Over the Rainbow," "Sentimental Journey," and the request from moi: "You Can't Get a Man with a Gun." I chose the song I'd never heard.

The brunch was steak, asparagus, crab cakes and desserts galore. It was nice to meet some of the children of my new neighbors. Today I plan to meet a woman with advanced MS who has lived here many years. Never a dull moment here.

I Only Have Multiple Sclerosis

To visitors who leave comments inviting me to try their drugs or join their surveys (adding how much you love my blog, which you have obviously never read) for various chronic illnesses, I ONLY HAVE MS. (Knock on my wooden head) I maintain (poorly, but I'll get better) a list of 100 chronic illnesses and many of my readers have illnesses or no illnesses, but click on the blogs of those with the disease you are concerned with. I am not a good candidate. I have multiple sclerosis. (And for my MS I get drugs from my own doctors not strangers.) Thank you.

Polycysyic Kidney Disease and Living with Chronic Illness Blogs

http://pkdkidney.blogspot.com/ Life with Polycystic Kidney Disease

http://achronicdose.blogspot.com/ A Chronic Dose: A blog about chronic illness, healthcare, and writing. Read the recent post about: "“We are good at causing disease but not good at fixing it,” Popkin says, a comment that goes beyond the idea of the soda tax and hits on the basic structure of our current medical system. Right now, we spend too much on band-aids for the problems rather than taking steps to correct them at the source. To that end, Popkin sees the beverage tax as a major way to help fund reform and improve health and quality of life. "

Trying to Walk Again with MS, Bad Day Friday

My walking (with leg lifting from Amy) was a blow out Friday. I got way out into the room and lost strength or lost focus. I got scared. Called for wheelchair and fell safely into it. Felt like a failure. Know I must not. There is a long road ahead. I have come very far. Considering a helper dog, no, can barely care for myself. My insurance coverage. under partner, from University of Washington has ended. I am now officially is the Medicare muck. Glob Glub

Obama, heal me. Make Medicare work for all Americans. The fat cats will hiss at your every attempt---sic Bo on 'em.

Got into and OUT of new power chair ON MY OWN today! Went to Father's Day brunch here at the retirement place. They had singers, I took pics. I love my table mate, Viviene. She can't hear well, but always seems to hear me. Her wedding ring is from 1800s, and her engagement ring it connected to her mother's. She was also wearing my birthstone--Aquamarine. Hers is pearl.

Today I will try and walk better, not get scared. I never used to be afraid of anything. Can't believe I've been here 6 months already.

A Real Man--Celebrate Fathers

"My Father taught me how to be a man--and not by instilling in me a sense of machismo or an agenda of dominance. He taught me that a real man doesn't take, he gives; he doesn't use force, he uses logic; doesn't play the role of trouble-maker, but rather, trouble-shooter; and most importantly, a real man is defined by what's in his heart, not his pants." --Kevin Smith

Iran Protests Alive on Internet

Revolt in Iran during this time, during Internet, when regular people can get the word out while bypassing the normal media route, is fascinating to follow. We in America will hear many stories and what can we believe? Obviously, with a close to insane man like Ahmadinejad in power and stopping our press from reporting, any Tehran reports are suspect. (To the MAX) How do we find out what is actually happening?

Of course figuring out if the election was rigged will be as easy to do as it was for us to get to the bottom of Gore and Bush's fiasco. There will still be information revealed about that election in years to come. I do have faith in the common sense of the mankind, and the Iran election reeks of corruption. But, I must remind myself that I am just a girl from Indiana, a blogger from Seattle, and those much more knowledgeable than I will determine the depth of this situation.

I voted for President Obama to handle such situations. I support the United Nations. If Sean Penn hops a jet over there, I'll hear him out. But hearing of tear gas, water hoses, holding the losing candidate, Mousavi, responsible for any uprisings (this threat from Ahmadinejad)---one can't help but remember the 1960s, our great civil rights movement---the similarities are eerie.
We are freedom fighters in the U.S.; it is difficult to sit by and feel so paralyzed.

Well, as Obama says, "The world is watching." I might add that we are Twittering, Blogging, Emailing, taking I-Phone pictures, and not relying on "the media."

Never Had a Father

The only professional picture my mom ever had taken. My sperm donor, or father as some say, left her the day I was born. Tomorrow for me is just another day, but here's to you, Mom.
She just found out she has completely lost hearing in one ear. We joked that it was a good thing she had two. Laughter can pull you through a lot of, er, stuff.

Racist Jokes Racist Mind and Ignorance in Action

"Historic Keepsake Photo" (an email "joke" sent out by a Tennessee Rep. asst.)---If you find this funny STAY OFF MY BLOG.

The MS Me, Basketball, Tai Chi, Look in the Mirror

HORSE at a co-worker's house in Seattle.



Within weeks of moving to Seattle my MS symptoms took off. I suddenly couldn’t run around a block, no huffing just a leg that wouldn’t lift up. I would sit 5 minutes and finish the run. My Tai Chi class was a blow-out, couldn’t lift my legs right. It was downhill from there, 1982, until now.

During 1986-2004, I landed a perfect job with the city of Seattle. Knowing that my body was up to no good, I really needed a safe, benefits laden, desk job-harbor. What bugs me is that no one I met at my job of 18 years will ever know the Diane I was before MS.


Most will remember me as I appeared during my last 10 years there: moving with a cane, scooter, and not appearing at their many get-togethers. They will never know the Diane who played basketball for hours or ran for miles, walked into nights and was an actress. They never got to hear me do public speaking. They never went on a long car trip with me. They never even saw me walk a dog. It is like what aunt Vi says when she looks in the mirror at her century old face, “I don’t know that person.”

Well, I don’t think I know this MS person I’ve become. Like a drippy faucet, changes happen slowly, drip, drip, until, I am no longer the Diane I was. An elderly man in the elevator at my new home today mentioned that he liked that it was not raining in Seattle. I replied that he must be happy now. (We are hours away from breaking a record for least rain in Spring.)His response was, “There is never a reason to be happy in a place like this.”(Referring to having to live in a retirement/assisted living facility VS his house. A common refrain among the elderly here.)

I held my tongue, but wanted to say: At least you didn’t have to move here in your early 50s. I get it though, and I felt so bad for him. No one will know who he was. Sometimes it feels as if you have disappeared.

Well, I tried playing ball with my co-workers during my first few years with the city. The worst thing was hearing them say how good I was. PLEASE. But, they didn’t know me before. Once I asked my best friend what she would want on her tombstone. (We were in our teens.) She wasn’t sure and put it back to me. “Forget me not,” I replied.

Unfortunately, the forgetting has already begun.

MS, ME, and My Bat

Check that major league form. hahahahahahaha A hot summer day and I wondered why I couldn't run fast...a few years pre-MS DX.

MS Donation: Try Local Groups

Today I said farewell to an old friend---my power chair. It was never fitted properly to me by the PT or medical store sales rep., never even able to enter my bathroom. Rarely used, it is really almost like new. I would never consider donating it to my local MS chapter, since they have never done a thing for me, but I found a fantastic place in a nearby city, Edmonds, WA., that took my beloved scooter some years ago.

They are called MS Helping Hands and the people there are so kind. Their logo is a turtle and their slogan is: "We stick our necks out for you." They will help you if you have MS or any other condition that requires a mobility device from canes to 4-wheel scooters. They also have cooling vests, hospital beds, shower beds, you name it. They are a non-profit and ask only a donation, any money left over, after expenses, provides grants for people with MS living in Washington State.

Phone 425-712-1807 www.mshelp.org I know that power chair will find a good home.

ASK, TELL, NO MORE LONG TIME COMPANIONS

A photo from the 1930s of my great aunt (now 102) and her longtime companion (now deceased).


While many gay groups slammed Pres. Obama for "...not keeping his promises to us..." I held my tongue. Why? Because I believe in Pres. Obama. I believe civil rights for all is an issue close to his heart. I believe he has a plan, not a gimmick like Clinton's "Don't Ask Don't Tell" BS. Start at the Federal level. Show people that the country will not crumble, but will become stronger. Then the door is open to allow people of extended hands and seeking of freedom for all to applaud and support LGBT freedom.

Let us not force another generation of Americans to live less free than we all should, to not have to hide behind a mountain just to hold each other close.

Sun and MS--Don't End Up in Hospital

My neurologist put me on a weekly 50,000 IU dose of vitamin D after a blood test showed I had a low level. Two days later I was vomiting, dehydrated, and admitted to a local hospital ICU (intensive care unit); after 5 days nothing could be found wrong with me.

My neurologist has never admitted the high dose D could have been the problem, although she told me to stop taking it.

Since moving to my new assisted living home, I have spent several weeks in the Seattle sun and now my D levels are NORMAL. (My previous apt. was covered my trees and there was little sun to penetrate me.)

Now, I read that 14,000 IUs is as high as one should go and begin gradually. Sigh. Seriously, sigh. Every 10 minutes of sun gives your body 10,000 IUs, according to "experts." (I am starting to hate that word. Nowadays people are experts if others see them as such. I've noticed some receptionists even have their own "MS Expert" business cards---BLAH.)

Vitamin D is very importand for MS, but proceed with caution and common sense.

Canes, Scooters, and Power Chairs--The Quest to Keep MS from Stealing My Life

Like most people with relapsing/remitting MS, I started my quest for mobility with a cane. Living, walking, working in Seattle with its many steep downtown streets, the cane became an extension of me. Life went along fine with my cane until my employer, the City of Seattle, decided to purchase a larger building. The minute their decision hit the newspapers I wrote on a piece of paper which building I believed they would buy. Then I licked the envelope and sealed my prediction inside.

The one I chose was the one furthest from my bus stop, furthest up the steep hilly sidewalks, and the one that would be impossible for me to walk to. Why did I guess that building? Because fate seemed to send me and MS down the most challenging paths, and if I were wrong---how happy I would be!

The city bought that huge 62 story building which took up an entire city block. Even our “customers,” the citizens of Seattle, would later complain of the difficulty getting there. For me there was the additional problem of each floor being a city block long. Just getting from my boss to a co-worker would be an exhausting walk---once! I knew it was time to advance to my next mobility aid. My arms were not strong enough to push a manual wheelchair up the hills or around a block all day and I would need some real power for this effort. I began researching scooters.

At first I didn’t even know what they were called. In books they were called, “carts.” This was before the Internet was a shopping mall and I had no idea where to purchase such a beast. Then MS delivered a significant attack, I was numb/unable to walk at all or feel anything from my neck down. I had to get to my neurologist, but how? My partner was dealing with a health crisis of her own at the time, but together we found a place that would pick me up in a “cabulance.,” (That is a van with a lift, very common now.) and that was how I made it to/from the Dr.; oh, I had purchased a manual wheelchair early on, just in case.

IV steroids cleared up the all-body numbness (the kind where you can’t feel a BM until you smell it) and before I got to pack my work desk for the big move I was diagnosed with ovarian cancer. So….I had 6 weeks to find a scooter before I would return to work in the new building. (The cancer is another story, for now back to the first scooter.)

In the sunshiny yellow pages I found a “dealer” with a picture of a scooter in their ad. I found I could rent one and that is how I began, since I knew nothing about them. The scooter arrived. It was old, tarnished, tears in the seat and the steering ( I would learn that is called a tiller) was loose. I loved it. It took me all over my neighborhood. It rattled and seemed destined to fall apart like a house of cards at any moment, but it never did. I named it, though I don’t recall the name right now. Now, we all know that what I actually loved was the new freedom it returned to my life. Being able to travel to a bookstore many blocks from home, take my time and look at the books---I’d forgotten all I had been deprived of since MS. I’d forgotten how book browsing or shopping for a banana didn’t have to drain all my energy or take up all my day in its wake.

There would be a shiny, new, red scooter later, but the first one will always hold a place in my heart. The later one would travel over 5 miles with one charge and go up to 5.5 MPH, yes, it zipped up the hills of Seattle, passing by people huffing and humpfing me. It would keep me working in the 62 story building for many years, and carry me to all the other city buildings where meetings would be held. It would speed me safely away from street beggars and druggies, and drive me home when my van service never showed up. That scooter would allow me a life that MS was relentlessly trying to take from me.

That scooter’s name was Scooty and we loved each other. I cried the day I had to donate him away, when I was no longer strong enough to get on/off of him, or walk over to him. But I am happy when I think of the joy he will bring to whoever now uses him. (Or, perhaps now he is a she---I don’t judge.) By now Scooty is a rickety, old, house of cards…but still standing and giving someone their lost life back.

Dead Fish Fly High in Seattle

PETA keep your business to live creatures and leave our dead fish alone! I agree with many of your aggressive actions, but don't mess with this Seattle tradition. THE FISH ARE DEAD! The fish will be eaten. Throwing purchased fish at Seattle's Pike Place Market is a huge tourist attraction and hurts no animal or fish. Isn't your time better spent elsewhere? It is this kind of publicity that makes you look foolish and unimportant. THE FISH ARE DEAD. You compare it to throwing dead dogs----WHAT?? Get real, stay relevant. GIMME A BREAK

Walking Again with MS--The Journey Moves On

Friday I walked again, with longer strides. My helper (Let's call her Amy) said it was the strongest yet, and most of the leg lifting was all me! I really need that camcorder so I can watch. I prepare in advance of her arrival by stretching, a few exercises (I alternate bike and weights). We tried something new--she will stop by for just the time necessary to help me walk, then off to her job, so she arrived about 7:30am, left at 7:40. Just as I hoped, it only takes a few minutes. I can't stop thinking how HALF A DAY would be taken up going for a PT appt., and never get this far. We also can't get over how far I've come in such a short time. The future possibilities are...words can't describe. This time, after reaching the end of the room, my mind started to go to fear---I was way out with no where to go but walking or falling---but I pushed it out (My making "new pathways" philosophy, and one is made because the fear lasted less than a second.) and turned with no problem.

After we are done, Amy is always so excited and says, "How do you FEEL!?"

I fell numb about it, or matter-of-fact about it. It is something that just must be done.

Dogs in Heaven or Hell?

A man and his dog were walking along a road. The man was enjoying the scenery, when it suddenly occurred to him that he was dead..He remembered dying, and that the dog walking beside him had been dead for years. He wondered where the road was leading them. After a while, they came to a high, white stone wall along one side of the road. It looked like fine marble. At the top of a long hill, it was broken by a tall arch that glowed in the sunlight.When he was standing before it he saw a magnificent gate in the arch that looked like mother-of-pearl, and the street that led to the gate looked like pure gold. He and the dog walked toward the gate, and as he got closer, he saw a man at a desk to one side.When he was close enough, he called out, 'Excuse me, where are we?''This is Heaven, sir,' the man answered. 'Wow! Would you happen to have some water?' the man asked.Of course, sir. Come right in, and I'll have some ice water brought right up.'The man gestured, and the gate began to open.'Can my friend,' gesturing toward his dog, 'come in, too?' the traveler asked.'I'm sorry, sir, but we don't accept pets.'The man thought a moment and then turned back toward the road and continued the way he had been going with his dog.After another long walk, and at the top of another long hill, he came to a dirt road leading through a farm gate that looked as if it had never been closed. There was no fence.As he approached the gate, he saw a man inside, leaning against a tree and reading a book.'Excuse me!' he called to the man. 'Do you have any water?' 'Yeah, sure, there's a pump over there, come on in.''How about my friend here?' the traveler gestured to the dog.'There should be a bowl by the pump.'They went through the gate, and sure enough, there was an old-fashioned hand pump with a bowl beside it. The traveler filled the water bowl and took a long drink himself, then he gave some to the dog.When they were full, he and the dog walked back toward the man who was standing by the tree.'What do you call this place?' the traveler asked.'This is Heaven,' he answered. 'Well, that's confusing,' the traveler said. 'The man down the road said that was Heaven, too.''Oh, you mean the place with the gold street and pearly gates? Nope. That's hell.''Doesn't it make you mad for them to use your name like that?''No, we're just happy that they screen out the folks who would leave their best friends behind.'

City of Seattle Gays LGBT Under Attack, Now Lawsuit

I posted about this several weeks ago, now a national news magazine, The Advocate, has run the story. Well, now the world knows his name. He is as scary to me as the man who attacked the Holocaust Museum in DC., and full of hate for many years. He believes he is on a mission.


June 12, 2009
Seattle Asked to Identify LGBT Employees
Click the byline to view more stories by this author.By Julie Bolcer
A Seattle public employee has filed a complaint asking the city to release the names of employees involved with an LGBT group. Philip Irvin wants to challenge what he characterizes as inconsistent guidelines that denied his efforts to establish a group for formerly gay workers, reports the Seattle Post-Intelligencer .
Irvin, a Seattle City Light employee affiliated with a conservative Christian organization, filed a public-information request in King County superior court earlier this month. He charged that the city opposed his attempt to start an employee group for ex-gays, and called that a violation of civil rights law.
"Some people would say that I'm a civil rights leader," Irvin said. "I'm asking for equal rights, and, to that end, I'm attacking the internal inconsistency of gay rights laws."
In his complaint, Irvin asked the city to release the names of employees involved with an LGBT group for Seattle Public Utilities. He also requested copies of their meeting sign-in sheets, minutes, and agendas.
Some members of the group, who were informed they would be identified, have sued the city, claiming that state public-records law demands that their names be withheld. They secured a temporary restraining order until Wednesday, when a Kings County superior court judge will hear arguments on whether to block the release of names.
A separate memo that Irvin sent to the Bellevue-based Faith and Freedom network indicated his concern that members of the LGBT group have used city resources such as e-mail to conduct their business. He also called them hypocritical for wanting to publish the names of people who sign Referendum 71, the effort to repeal the new state law that expands domestic-partnership rights.

Vacation Needed from DUH Research

A TV station just announced that "new research" shows vacations are good for your mental health. You know what is good for MY mental health---NO MORE STUPID, DATED, RESEARCH. Research THIS! (Ignore my bad mood gesture, no vacation lately, obviously I refer to MULTIPLE SCLEROSIS!) (Feel free to gesture and fill in your own disease.)

Chronic Illness Blog: Bronchiectasis/Lung Transplant

"I will say all the things you are afraid to....and I will ask all the things you're too scared to...This is my trek through pre and post lung transplant courtesy of a lung condition called Bronchiectasis. I started this blog to keep friends up-to-date about my transplant. I hope that if you are going through something similar (or the same thing) that this blog allows you to find inspiration and humour through it all, and gives you comfort in knowing that you are not alone and never will be."

http://bree-theblogblog.blogspot.com/

"When life hands you an illness---spread it."

Waking a Dead Leg: MS Walking Again Diary Day 20

If I had made an appt. with a physical therapist today, then half of my day would have been used up with dressing, bathing, getting my ride, getting to and from the PT clinic, rushing to use a restroom, many little things that most people take for granted.


Instead my comrade in my pursuit of walking with MS, of rising from the constraints of a power chair, of freedom, independence, and constitutional happiness, came this morning at 7:30 am and she left at 7:35. In that time I walked further than I have in over a year.
She came in my apt., strapped on a gait belt around my atrophied left leg, set up my walker and off we went. I walked with her minimal assistance as far out as my living room went, then turned by myself and walked back to my lift chair. It happened just the way I imagined it would.


My comrade was overjoyed, excited, thrilled, kept gushing, “I can’t believe it!” My partner was still asleep and missed photographing the event; but she cried with joy and astonishment…it was really possible.


Recent barriers have been getting the schedule of my comrade to match my needs. She has a job and her mother is in town. She also has two young children in school and there are activities she must attend. Fitting me in is a challenge. I move better early in the day. So, we thought: what if she stops by just long enough to give it a try? Some days I wasn’t able to move the leg at all, so it took up only minutes. My Craig’s List volunteers need to know how much time is involved and so do I. Now I know.


It has been my theory for some time that this goal can be reached with very little time for each assisted walk. The exercises that happen throughout the day require only my own time. My big idea (always encouraged by my 102 year-old great aunt Vi, and called “ridiculous” by my mother) here is to change the way MS diagnosis is handled. I believe PT should be prescribed along with or even before drugs (currently available drugs) and would be done IN THE PATIENT’S HOME.


Just like the way a stroke patient is immediately put into a PT program located WHERE THEY ARE (which is normally in a hospital) and data has proven this is most beneficial for stroke recovery of functions, so must MS be treated. If I can prove how simple, how little time is involved, then maybe the medical and political communities will realize the value of such treatment. I believe I would still be working full-time today had such PT been available to me in 1990. But, this is still a theory, I have far to go.


Now my MS Diary of Trying to Walk Again is up to date. I will post significant discoveries or events, and you should know that when I am not posting I am exercising/preparing. (I will go into detail about that later.)


Also please accept my appreciation for all your support and BLOGS! Your blogs help me to gather data on symptoms and how they affect your life. You help many with your blogs. Thank you.

Security Guards as Heroes and Minimum Wage Flunkies

Much has been said lately about giving too much personal information via Twitter, Face Book, etc., some people were robbed after telling that they were going on vacation.
Folks, crooks will always be with us. One of my first (desperate) jobs in Seattle was that of security guard. My first gig was to hang out at an expensive house during the widow’s husband’s funeral. (Probably a better way to write that, but I’m tired.) Crooks would read the paper and break into houses during funerals.

This post was going to be about my job as a security guard, how I made the airport scanner’s alarm go off while escorting my mom (She was so proud, LOL) and I told them, no, I had no gun, just metal badge/keys, so they passed me through without doing any more checking. (Even then, in 1984, I knew it was so wrong.) How I guarded a royal princess from Norway (or Sweden, I’m forgetting.) and a vault of diamonds with a shooter locked inside. How most thefts were inside jobs by guards being paid minimum wage. But, yesterday’s death of a museum security guard spins my point around.

There are many great security guards, paid little and on the front line. I, like many, took our jobs seriously. Many are retired military or part-time cops. Yesterday a security guard at a museum (I once guarded a synagogue during a ceremony, how sad.) was gunned down without warning. A hero among us. Maybe evil must exist to present the opportunity for heroism. Life is all about opportunities.

Let’s hope our media spends as much time on the life of that hero as they will on the killer.
Anyway, here is a photo of me to make you laugh. Even the cat, Cali, was thinking, “Are you nuts?”

Killing by Bigot in Washington DC 88 yr OLD MAN- HATE CRIME

88 year old attacks Washington DC Holocaust Memorial Museum. Another racist, bigot, anti-Semitic man wants the good old days back. Makes me sick.

Placebo for MS, Parkinson's, Love and Life

Scientists led by Daniel Cherkin from the Seattle based Group Health Center for Health Studies did a placebo acupuncture test on 638 people with lower back pain. Both real and phony treatment relieved symptoms twice as much as usual care. Also. The higher the expectations--the greater the pain relief. Now, we have known placebos work since before dogs barked, but you know us humans, we must “scientifically prove” things.


Since the late’70’s researchers armed with better brain-testing equipment began noticing that when a patient is told a pill will help then activity can be mapped in our prefrontal cortex (higher mental functioning there). That brainiac then tells other bored regions to start some homemade opiates (let’s see the DEA ( Drug Enforcement Admin)try to bust THAT region!


Oh, and are we cost “conscience?” You bet! If we are told a pill costs 50 cent (respect) but another costs $4.00, yep, the $4.50 placebo works better! (85% VS 60% done in a test by Duke University.)


Injecting saline reduced Parkinson’s patient’s symptoms in a test done by the University of British Columbia. There they noticed dopamine was released. (much needed in those with Parkinson’s)


Now the grand placebo effect, does not last, nor does it always happen. This fact will keep universities and scientists testing poor patients who hope to get some symptom relief, for years to come.


Can’t we just accept simple Pavlovian research? Run the can opener and your cat comes running. Kitty thinks food will follow because Kitty’s brain made that pathway when it was young. Yes, scientists, our lowering functioning brain regions DO talk to the higher ones; they are not as snobby as we humans. Once again proving how the mind-body connection is also only made possible by 1.THE BRAIN and 2. THE BODY.


Once we accept that premise, we can truly “master” ourselves. Unfortunately, too many doctors misuse the “placebo effect,” and prefer to tell us that our symptoms are “all in our head.” Just because we have some power that they don’t, come on, work with us. Insist they don’t dismiss.

What if our first love was only a placebo? What if MS is just a placebo? What if the real thing is the current love or life itself? Or...the other way around? Our brains expect something and make it happen, if only for a moment. Or could a placebo be nothing more than a placebo for it?

Read Obituaries and Feel Jealous of the Dead? Do they know how we feel?

"You Don't Know" from the musical Next to Normal


DIANA (spoken)You know, really?What exactly do you know?DAN (spoken)I know you're hurting. I am, too.DIANADo you wake up in the morning and need help to lift your head?Do you read obituaries and feel jealous of the dead?It's like living on a cliffside not knowing when you'll dive.Do you know, do you know what it's like to die alive?When the world that once had color fades to white and gray and black.When tomorrow terrifies you, but you'll die if you look back.You don't know.I know you don't know.You say that you're hurting, it sure doesn't show.You don't know.You tell me let go.And you may say so, but I say you don't know.The sensation that you're screaming, but you never make a sound.Or the feeling that you're falling, but you never hit the ground.It just keeps on rushing at you day by day by day by day.You don't know, you don't know what it's like to live that way.Like a refugee, a fugitive, forever on the run.If it gets me it will kill me, but I don't know what I've done.

Oprah is Satan?

Newsweek really tears into Oprah this week. I used to watch Oprah weekly for years, but stopped a long time ago. Oprah is a woman we can all be proud of. She is a self-made billionaire who loves to give her money away to those in need. She gives many African American women hope, a hope that wasn't there before O.

Lately I have had harsh criticism of her response (or lack of) to certain guests, selling their books, not questioning their facts (AAAAMontelCHOOO)(Excuse me.) and leaving the impression that what works for one person can work for you, if you just believe.

What I feel for Oprah is sorry. I feel sorry for her. Her man won't marry her, she can't control her eating, she struggles with her past abusive childhood. Money can't fix those problems. Friends like Maya Angelo and Obama and Mandela can't fix her---only she can. She keeps trying. She keeps seeking.

People who love her and are fans must take responsibility for sifting all they hear from her show. That is not on Oprah. She is so big hearted that I can not fault her for having influence on other people. We would be lucky to have more Oprahs in this world.

So, Newsweek gets a chance to put her on its cover and sell copies because of just that alone. Are they any better? GIMME A BREAK

Bipolar Disorder Hits Broadway

Nest to Normal, a musical about a woman dealing with bipolar disorder, won a Tony for the lead actress. I saw a short scene from the show and wow. Powerful.

Caregiver Religion

It is very difficult to find a good caregiver.

Read that sentence again and take it in. One day you may need to find one. You may have one already, for your mother or father. There are many agencies which provide these caregivers. There are individuals who advertise their service. Where I live now there is an in-house agency and the owner is very receptive to my needs and concerns in regards to a good caregiver. If that were not the case, I would not stay here.

Before I became as disabled as I now am, I used several different agencies and private individuals. I could write a book about all the horrible, yes, horrible care I was “given.” The owners were often as ignorant as their employees and none of them cared; they had a good deal---hire anybody, send them out to be with elderly or disabled people who are too ill to fend for themselves and nobody is the wiser. Think about that. I do. It makes me sick to my stomach and heart.

Once I had a caregiver who preached (the old testament was all she believed in) to me, told me I was going to hell and so on FIVE DAYS A WEEK FOR MONTHS. I would tell my partner who was upset and furious, my friends were furious, but I reassured them that I was fine with her because she at least did her job of bathing me, feeding me and I simply listened and presented other views. It brought back my old debate years and kept my mind busy. I even read the Bible too be prepared for her. But it tired me.

Some of my usual caregivers here have taken vacation. I have a new one. She not only is a poor caregiver for my needs, but she crossed the line last night. She asked my partner, “Do you go to church?”

Now, one caregiver is a gospel singer, she sings, I like singing, I sing too. No big deal, whistle while you work and all, but last night was different and I am not going to put up with religious painting in my apt.

This morning, (I’ll call her “Ruth”) Ruth was due to wake/clean/dress/transfer me, etc., at 6AM (“sharp”) the owner has told me, well, Ruth arrived 20 minutes late and I, by then, had done my best to care for myself (I HAD to use the loo and all---there had been other issues with Ruth so my bar was set low) when she came in she began, “I’m so sorry I forgot…” (FORGOT? FORGOT?) As she made her way into the bathroom I said, “Did you say that someone had fallen?” (An emergency with another client would be an acceptable reason.) Ruth stammered and said, “I was on the phone with my family.”

“Oh,” I said calmly, “Your family in Kenya?” “Yes,” she replied.

I sent her to get me a drink of water. After I got back to my lift chair (by myself and yes, hurting my bad shoulder again--the adrenaline was flowing though) I called her in front of me.
“Ruth, I want to tell you something. When I was a little girl my mother told me never to talk about three things with people. Do you understand?”(She has ALWAYS but once, immediately replied by nodding her head or saying yes, but I learned the hard way that she mostly does NOT understand.)

“Your mother told you three things.” (sigh) I repeated, slowly, calmly, articulating with great aplomb. Then I continued.

“You asked Karenlee last night if she went to church. (She began to interrupt, explain that she had been singing a religious song because she was feeling blessed and Karenlee mentioned that another caregiver sings and…” I firmly stopped her.

“Please. Stop. I HEARD the whole thing. I want to answer your question. (K had said, “I’ve gone to many churches.” to which Ruth replied, “Good. But there is only one God”)We are members of the church of inclusion. Do your know what that means?”

She shook her head no, with that wide-eyed, hunched over, body language she speaks whenever she does something wrong. (Like shaking a lamp to turn it on, trying to plug a cord into a chair seat instead of the wall, saying there are no garbage bags when there are a dozen boxes in front of her and so on) “It means we exclude our love from no human, whether they believe in God or not. Because we don’t care,” (She now understands that I am displeased and her “I’m sorry”s begin as she tries to interrupt.) “please let me finish. I don’t want to hear you say you are sorry again. We don’t ask what church a person goes to or if they believe in God because WE DON’T CARE, all we care about are their deeds and actions (I press my hand to my heart.) that is what matters.” “Yes, yes,” she is saying and as she begins the I’m sorry I hold up my hand.“Stop saying words. Don’t do it again in this apt. and do better. That is what I tell everyone who says ‘I’m sorry’ too many times. Just don’t do it again and next time do better.”
“I will never, never do that again.” “ I know you won’t.” I hope she understood the solemn firmness in my voice and direct eye contact to mean that if you DO then you will never step in my home again.

So, I will live with her “services” for the vacations because she is polite (if we strike our first encounter) and she was put in a bad situation from the start by HER boss---no training about my needs or MS or, well, I can’t see any training. If I complain, she may be fired from here and I don’t want to be a part of that. I shouldn’t have to be.

I see clearly that no matter the living situation (in your own place or a facility) getting a qualified, good caregiver will always be an issue. Now, we can handle it, but as our cognitive function simmers down, as I, in the words of my neurologist, “dwindle” then hopefully the universe will see fit to keep us safe in the care of a giver who respects those who can no longer stand up for themselves.

My previous complaints have already enacted the wearing of name tags and a sign-in sheet showing what duties the caregiver completes. Seriously, I grow weary.

Struck by Lightning

We had a terrible, unexpected lightning storm around here a few nights ago. A boy was struck. He was interviewed with his dad on TV and I noticed how long his hair was and how buzzed his dad's was. How times have changed, I thought. I made a poor judgement on what that boy was like---a rebel, a "I want it MY way, not dad's!" kid.

Then he said he only hurt when "...they put the IV in..." and he was glad his hair was ok because he had been growing it for 2 years to donate to Locks of Love for chemo patients.

Wow, I felt like my grandma's worst judgement call. ME, the big liberal.

Hat's off to you, kid, for giving me a reality check.

Cell Phone Frankenstein

Cell phones are starting to bother us. We loved them in the beginning, but now we wonder: Have we created a monster? Did Dr. Frankenstein do the right thing? It made sense at the time.

One day I was crossing the street with my cane and a car just blew through the red light. Barely missing me, people nearby were aghast and so was I when I saw the driver was talking away on a cell phone! 4 lanes of traffic at rush hour---he didn't apologize or even look at me after he slammed on his brakes. A few of us yelled at him, but why bother?

We have begun making laws to prevent hazardous driving while chatting and texting on cell phones. We have begun research on how they affect our brains. We ban their use in movie theatres and at plays. We demand ways to limit their use by our children. Now new research has another ring on it.

Seems the ring tones (usually songs) have caused stress among some folks. (Yes, money was spent to research this.) The sudden noise can cause the fellow behind you in line to jump, perhaps even experience PTS (post traumatic stress). Now, all together, let's figure out the yet to be researched downside to cell phones. I wonder if Mr. Bell ever considered the damage his contraption might cause in the year 2009.

Drugs VS Liver, Can Our Body Handle Good Health

Isn’t it interesting how many drugs used to help one condition are later found to be of service to another condition? How does this happen? Do doctors notice, note, and advise the drug company that side effects include an improvement in another condition? How close are doctors and drug companies?

Many doctors have used drugs “off label” meaning they prescribe them to aid in a condition where improvement has been seen.

It seems that daily we read about some drug meant for, example, diabetes is now been shown to help slow MS. Vitamin D now is shown to slow relapses in MS and some think maybe prevent it.
Every day I read about some new vitamin that helps a condition never before understood to do so. I wonder, what if we just took ALL the vitamins, all the drugs (one at a time) to prevent osteoporosis or stop baldness, BEFORE we actually had those conditions…what would happen?
If we have drugs to stop or help so many health maladies, why not take them? Are we not all about preventive medicine? The drugs manufacturers could then lower their prices, Emergency Rooms would be less crowded, vitamins are becoming more and more concentrated (you can get so MANY different vitamins in one pill)---what would happen? If our liver couldn’t handle it, we would make a drug to support the liver.

Stories in the news and on the street, often tell of a person taking over a dozen pills a day. We have become a nation of pill poppers. If they really help the quality of our lives, why not take them all? The vaccines that children take keep increasing over the years. Would the benefits out weigh the possible disasters?

Have you ever said (and done) “I’ll try it.” Well, what do you think?

Simon Schama and Mexican Texans

Simon Schama is a historian and social critic who examines how many of our current political issues have been asked again and again since out country was born.

"In the 19th century, Texans complained about immigrants stealing their land (except then the Texans were Mexican and the immigrants were white settlers), and the nation debated water torture (inflicted on Filipino "insurgents" in the Spanish-American War.)

Changes, always coming---always here.

Bridge with Dummies

What happened at the next bridge “workshop?” After I spent hours memorizing and looking up definitions from the information sheets the instructor gave me, I was really psyched. I would look on this as an acting gig. I would act like a bridge player from the freakin’ royal family---prim and proper.


When I showed up the same gang was there plus a new woman who was a beginner like me. (YEA) I sat next to her and we laughed about not knowing the game well. Already I had lost my façade. But, onward, as are seats were assigned.
My gosh, I thought they treated ME like dirt! They were so mean to her. Now, I have no problem with the gruff instructor. (I laugh on the inside at him.) But this lady had to change chairs and dropped her tissue. “I think that’s mine,” she said as the man I’ll call Hal took her seat.


“No, it’s nothing,” he said in a supercilious declaration. She then reached for it, saying under her breath, “It’s my tissue,” and tossed it behind her, aiming for a chair or table. The offending and innocent tissue fell on the floor. Hal got up in as a huff and dramatically picked it up and walked across the large room to put it in a trash bin.
The other players were unaware of all this and began asking, “Where is Hal?” My new beginner friend said with disgust, “He had to throw my tissue away.” Hal responded, “THAT is NOT where trash belongs!” in an angry voice I have never heard come from a man in real life, only in the movies.
Hal was at my first game and was perfectly ordinary, so much so that I didn’t even remember his name. After he said that, the woman glared and we exchanged glances, mine telling her, “Yo, what up with THAT dude?” (Oh, sorry, I mean, “Darling, whatever is up his knickers?”)

I felt so bad for her. She would get the bid and then ask, “What is trump?” Geez, you would have thought she just cut off the head of Christ. They hit her like Seal hits that, and not in a Heidi skips on the Alps way. It was painful to watch.

So…here I am, once again forced to say something to Hal and the instructor about being out of line, inappropriate behaviour, and let’s treat each other with respect. (NONE of them are James Bond at bridge, by the way. I have played enough cards to know when somebody doesn’t know what is going on, loses their concentration, or just simply slips up.

That was bridge. A lot of rage and I suspect having to live in a retirement home, losing your spouse, not seeing your kids much, having to throw out years of mementos is one of the most upsetting things a person can do. But, like it or not, we are all in this together. “Pass.”

Multiple Sclerosis Interview with Diane J Standiford in New Mobility Magazine

Soon the paparazzi will be after me and I'll have to make sure my caregivers are packin' (more than Depend) hahahaha A great magazine for people of wheels. Check them out online and subscribe. http://www.newmobility.com/

Dauchsund Babies and Many Hair Colors

When I was born I had dark brown hair, by 4 it was pure blonde, at 7 it was almost red and stayed very auburn until age 18 when the gray started and brunette stayed until 33 when it was very salt and pepper---speeding toward white ("Because of the shock of having MS" my in/out-laws would say with all seriousness) and at 45 it just slowed down and has stayed salt and pepper ever since.

The above puppies were from the two beloved dogs of my aunt's longtime companion's brother and his wife. Gee, they could legally marry, yet never have children, just dauschunds.

Wheelchair Dancer,Give Kids with Disabilities a Chance

My partner worked at a camp for children with disabilities during a summer off from New York University. She was studying acting and film. One of her great loves was dance. (She studied dance for12 years.) Putting all her skills together she directed a musical for the kids to participate in.

The idea was pooh-poohed and in the past music was played and the kids basically just stood or sat on stage. My partner put on a musical with the kids speaking parts, singing, and dancing. One child was particularly shy and all were shocked when she got the lead! There she is at far left in photo, in her wheelchair. Wheelchair dancer. I ask my partner to tell me the story again and again (she thinks it was no big deal) because that girl's life was changed forever. All the kid's were treated just like any other entertainer.

1977 Photo taken by my partner, Karenlee. I ask her if it was difficult. She looks at me quizzically and says, "Not at all."

Walking with MS Diary, My Journey of a Thousand Miles

Really hot in Seattle the past few days. We are spoiled whiners here (or winos...I get confused, blame it on the M, M, M M M M MS; blame it on the M M MM MS) and a day in the 80's is pure hell. I am slowed to turtle on Zanaflex mode. My feet swell. My brain shrinks. My nerves fry. When it is in the 30's we act like Global Warming has put us in the Ice Age (but soon we will see Russia from our window!)-----caught The View, lots blipped on West Coast but so glad to see EH supporting one of the needs for abortions: RAPE. Now that she has brought whatever it is she was worked up about to the attention of perverts everywhere, there will be plenty of people reading about it. Way to go, EH.

Teaching an MS Leg to Walk Again

Up and right leg lift and shift weight, "now,"

and left leg lift. Notice the strap on my dead leg---the helper pulls as I shift. Slow process, but we all get very excited.

Viewpointe on Queen Anne--Never Be Alone Again.

There is a large patio at my new home (The Viewpointe on Queen Anne--see previous posts) and these rock sculptures sit in the sun there. There are also many chairs, benches, and tables, all ready for parties, gatherings of family, or peaceful watching of birds or the nearby lake.

Easy to feel lonely when one is older or disabled, and living away from the home you once knew so well. Here you may feel lonely, but you need never be alone. (Even sitting quietly reading or counting the sailboats.)

That toad with the crown seems to be holding a magic ball...shall I approach and ask what my future holds?

Lost Plane in 2009? Technology Fails So Easily?

With all our modern (that word "modern" is so yesterday) advances in technology, HOW can we lose a plane full of people? An Air France with over 200 passengers has disappeared today. Gone.

Games Abound at Retirement Home for MS Girl

Okay, let me get this off my chest (sorry Hef), I am bummed Susan Boyle didn't win. I never saw the winner dancers, but speaking for ordinary women everywhere: DARN!

Now, back to cards. I was invited INVITED to a bridge "workshop" shortly after moving to my new retirement/assisted living home, by the instructor. Of course the hour it is held is a bad time for me, but I kept dreaming one day I would go. Last week I went.

The other 6 there had played bridge before, a lot. I had not played ANY cards (not for lack of looking for games) for about 20 years and didn't even know if my weak, contractured hands could hold the cards. I told the group right off that my hands were bad. They saw that and asked WHY I didn't have a card-holder. Yes, great idea that I'd thought of often, but without a game in my life why bother?

Anyway, I did my best in the last year (knowing the older generation is big on bridge, I am a Euchre/Poker player myself---OH! I just remembered I played pinochle about 10 years ago, having never played before and we won. 'Tis said I have a knack for cards. EMPHASIS on "TIS or TWAS--anyway I started playing bridge online and was apparently a horrid player. So, I was happy to hear I could learn before I jumped in to the nightly bridge games here.

DIDN'T HELP. Matter of fact, one player rolled his eyes so much I thought he would lose them. I was shouted at, sighed at, laughed at, I was pitiful. HEY! I expected newbies not the Weds. regulars. Anyway, I asked a question that was never answered, deemed too obvious to answer I guess. (I later looked it up online, now I can answer it in one sentence. Uh-hem)

I spoke too loud, I spoke too soft, I whistled (big no-no, very British upper crust this game), I laughed when apparently nothing was funny (I found LOTS funny, especially since I enjoy laughing at myself.), basically I was a bridge big L.

Then the nasty set in. During my partner's (or "friend" as the folks here call her) lunch in the dining room (elegant and it is very painful for her to sit there still) the guy across from her was the eye roller (I think he got so disgusted with me at one point during the game that it was questionable that he might seize.) starts telling her off about ME and my ignorance about bridge.
When I heard that I wanted to grab my cane and, oh, right, this is my new family...I digress, partner changed subject and gracefully spoke with woman to her left.

Soooo, this week is another workshop and I will be there, just to observe and learn from these pros. My new aide today told me she thought I was in my twenties. Hmmmm Hog to slaughter me thinks.