The Viewpointe on Queen Anne in Seattle, Good Life for Seniors and Disabled

Can you see the little light brown dog? He smiled so big it made the flowers bloom! (My hand was not fast enough to catch him, of course, before he headed back in.

Inspiring Seniors Tending Beauty on a Small Patio

Patio Garden, Flowers, Tree, Grass, Parrot

Last chance to check out a neighbor's patio garden, before winter sets in. She has the cutest little dog and even grass growing on her first floor unit's patio. So much work has been put into it and the lady says she loves tending her garden. Wouldn't you know, our building's roof is being worked on and all her plants will be covered in cement dust, or whatever jack hammers jack up.

We residents are none too happy about the coming months, but we will have a solid roof and many holidays to celebrate! Perhaps some of the beautiful gardens flowers (she even planted a tree!) can be covered and saved.

No one here is giving up or sitting around doing nothing. It really is a fun place.

Power Outages Bring Fear to Elderly and Disabled

Big storm in Seattle Sunday night, very windy. Our lights flickered several times, staying off a few seconds longer than usual. (This is my area of humble expertise, having worked for the city power dept. for 18 years, getting certified from Sears in electronic repair, and several college level electronic course under my Goodwill belt! Meaning: this was not the usual flicker.)

Over 7,000 customers of City Light were without power during the night. MY power stayed on thanks to a generator my new retirement home has. (I just found this out and of course it was on my list of things I wanted at any assisted living home, but I moved so fast and was so sick that, well, I forgot all about it.)

In an earlier post I discussed how I have always longed to "be safe;" yet, I never felt that way. I feel so safe here. Losing electricity had become a fear. My power chair (my legs!) needed to stay charged. My throne (my lift-char/bed) needed power or I would be trapped. I was trapped one winter outage, in the down position and sleep was not pleasurable. My MS will try to kill me in the heat, so my fans are on all year long---as needed. And transferring in the dark is dangerous.

My full comprehension of the fear that seniors had when they called me at work to report an outage, and called again an hour later to beg me to "flip the switch," (Yes, many think it is that simple.) was not completely realized until I became disabled and had thousands of dollars of medicine in my fridge that needed to stay cold. Food can spoil too and it is impossible for seniors/low income/disabled to just up and buy more food.

'Blow winds and crack your cheeks! Rage, blow!" -Shakespeare

I care not! For once in my life I am safe! -Diane

Being Wheelchair Friendly

OK, now seriously, seriously? sigh

Step Over My Grammar and Trip with Me into Blogs

An anonymous commenter let me have it about my poor grammar, spelling, and overall pitiful writing I had posted on my blog. She/he was completely correct, and that is what really irked me. I pride (ed) myself on my use of good grammar and my skin scrawls when I hear or read something that doesn't resemble English.



The commenter ended by saying, "How can you expect to be taken seriously?" (something like that) I had to defend my blog by retorting that one should not take me seriously, go take some other blog seriously. The truth is I have said those same words to others (usually kids) when they desecrate the English language. I have helped people write resumes, while shaking my head at how poorly written their draft was.



No excuses, the commenter was right, but the current time restraints I live under along with my inability to command Vista has lead to some crappy posts on Blogger. Yes, it is my blog and all for fun (once for relaxation---HA), but I still should do better. I see my story writing as "real" writing and the blog as casual PJ-wearing writing. But, bad habits can sneak up on you.



One thing is clear, I can't do it all. There are my books I'm writing, my blog, Twitter, Facebook, letters to Mom, emails to family and friends, game nights, song composing, poem writing, proposals for grants, proposals for my retirement home, and most importantly my Walking Program which I hope to turn into a book. Can I have more than 24 hrs. in a day?



Oh, and there is the reading I must do, again, once this was a relaxing occupation. All my activities will suffer from time to time. Get used to it, because I have to and I don't like that fact one bit.



For today, I will take a few trips from my lift-chair. Feel free to join me.



Drowsey Monkey http://drowseymonkey.blogspot.com/ , no, I'm not going to tell why she calls it that, I'm here to talk penguins. Her little penguins that follow your mouse around is addicting and I don't know why. It seem so childish, but maybe I can delve into the "what if's"--- like the penguin sheep application could be used for some higher purpose, who would design it just for fun? I feel guilty so often when I visit this blog just to play with her penguins...and only skim her posts...HOWEVER, many others must share my passion since all hell broke loose when she removed the penguins, so much so that she was forced to return them! Today she posts about her husband leaving...yawn...big deal, get over it, there can always be another! You have your penguins!

Here in the Hills http://sitteninthehills64.blogspot.com/ When I first discovered this blog, I read the title, looked at the photo of the blogger with her cigarette hanging slipshod out of her mouth as she lines up a pool shot, and thought: Oh, God, a hillbilly blog. After a bit of reading (the last bit I would do, since once you begin and glance at the clock---30 minutes has just sped by. Nobody can eat, I mean read, just one! Hills, Beverly Hills, and the little old lady is all dame. Her stories of Hollywood past will enthrall you and her exquisite photography of birds, flowers, travels, will leave you wanting for more.

Brass and Ivory http://brassandivory.blogspot.com/ is a must read for multiple sclerosis fans! (Yea! Go team!) This blog is the quintessential MS informational, inspirational and sensational one-stop shop. Shop for other blogger's stories, health links, interviews, investigational reporting on drugs, and even funny cat videos.

Palm Springs Savant http://www.rickrockhill.blogspot.com/ , now this guy knows how to take you on a trip! I stop by whenever Seattle's gray skies need a dose of sun and fun. Photos galore of trips all around the world. Tails of dogs and tales of celebrities, all the tails you can wag. Art, art from around the world that will take your breath away.

Great Minds Think Like Me! http://greatmindsthinklikemerainlillie.blogspot.com/ Lastly, I trip over to read up on the latest liberal news in the political arena. There are plenty of videos to check out in case I missed some Jon Stewart moment or want to hear a special song. You are always asked to participate on this blog, take a survey, play a game, choose a favorite song; it is not all politics.

Okay, on to the rest of my day. I hope you enjoy wherever YOUR day takes you!

Today Is? Life in a Retirement Home

I am going to buy 7 tees, each printed with, "Today is____" because I am asked, "What day is today?" every time I leave my unit. And now, *I* am asking it too...hmmm (My mother is in a nursing home and she asks each time I phone her.)

Trying to Walk Again with MS: Stand Up

Today a wonderful thing happened. I stood alone. My helper in my goal to walk again journey, Angie, stood me up and let me stand on my own two feet, while she was close all around me, ready to catch me should I fall.

I did not fall. With tears in her eyes, my partner peeked around our living room corner. I looked at Angie and she at me. It felt fantastic. I felt steady. I felt as if I could stand there all day.

We expected me to collapse or fall backwards, but I just stood.

After attempts to take steps were falling short of my expectations, I realized my ability to bear my own weight had been compromised. This was a scary thought. Some assisted living homes won't even accept someone who can not bear their own weight. Like the many special treats left behind by MS, this one snuck up on me. Using my walker was too hard on my weak arms when Angie and I began our walking routine. My arms were carrying all my weight. It was then that I had to begin building up my arm and leg muscles.

Of course, I had been doing daily weight-lifting for years, for decades; but, after MS there was a time when I could only lift a pencil! I lifted that pencil religiously, then moved to a pen, then a 2" tall slice of rebar. (A going-away gift from my previous job with Bethlehem Steel in Seattle.) I still can only lift the rebar with my weaker arm. So, for the past months I have been focusing on weight training. Since I suffer (I DO suffer) from spasticity, this attempt to build muscle needed a balance---enter stretching. Serious stretching, "Ow, that hurts good," stretching.

Today I stood. My plan continues, but I see now how very twisted the road ahead is, twisted and ever changing as my body tells me what it needs to proceed. Each day I will stand and try to stand longer and longer, straighter and straighter. Surprise! I'm actually taller than Angie! That tells me I have not shrunk yet...there is still an open window.

Ever changing, adjusting, but always moving upwards.

Sequence, Scrabble, MS Brain Crash and Keep Sailing OR How Ted Kennedy's Book Inspires

Had great time playing Scrabble the other day, with two new friends. One was newish to the retirement home like I am. We all three said we could only stay a little while, one had a cat waiting, the other goes to bed early, and my MS still gives me grief if I sit in the power chair too long. Almost 3 hours later we ended the game, all tiles played. (There was a quick break to check in on cat.) I was worried I would not be able to transfer out of my chair when I got home, but I DID! Woo Hoo!

Next I had my eye on playing a game I'd never heard of: Sequence. I saw a woman my age (who I was told had MS) learning from our maintenance man (I think he resides here too), and it looked like they were having such fun. (I was at the Bridge "workshop.")

So I approached her at lunch and asked if she would play with me. Yes! She seemed excited to do so. Score. Then I stopped maintenance man and double score, he agreed to teach me.

The three of us met and this game suits me well. No reaching, no keeping score, okay to TALK/LAUGH, shuffling of cards but they both were more than happy to shuffle. It doesn't go on for hours either. One hour would be perfect. We did play about two hours, I didn't want to stop.

The bridge 4, were at the table next to us and I couldn't stop from saying how much more difficult than Bridge this game was because the cards change with each draw and new strategies must be formed. (tee hee) Strangely, the Bridge players only stayed about 45min.

The game board has many different bright colored squares and each player has different colored chips and you must watch the play carefully, like Chess---to build your move while stopping their advance. About 10 minutes in, my brain started...going swirly. I couldn't focus on the colors and a complete shut-down seemed eminent. Vertigo seemed to be knocking on my door...I was scared.

When Ted Kennedy was a boy, he decided with a friend to sail across part of the bay. It was a bright, calm, beautiful day, with just enough wind for a wonderful sail. A storm blew in though,, sending gallons on cold water on the boat and boys. Teddy and his buddy were able to get the boat ashore, but he had no food nor money. And he was covered with cold water. He walked quite a distance to a store and was allowed to call home.

He reached the Kennedy chauffeur, who told Teddy he was on the way; then Teddy heard his father's voice, "Who is it?" When Joseph heard what had happened he instructed the chauffeur to leave Teddy there, saying, when you take a boat out---you bring it back. Teddy hung up in tears and cried all the way back to the sailboat.

Off the two frightened boys went and the storm lifted, the sun shone upon them, and Ted recalls it as one of his best sails.

I kept playing Sequence, even though my brain didn't like it at first, and it was the most fun I've had here yet! No MS after effects, and maybe it even helped my brain. I think it did.

When you sail your MS boat out, bring it home no matter what. Fear can often be pushed through to a sunny place.

PS---I won my very first game of Sequence! (And possibly Scrabble...the scoring got a bit rough, hahahahaha))

Jaclyn Smith Charlie's Angel LIVES!

For those who asked me. MAYBE her stunt double had an accident, but our angel is fine.

Montel Williams Hawking Blenders

Not one to kick a guy when he's down, I do feel the playing field is even because I'm just as down; that said---Montel Williams, sure enough, there was the "you can beat MS too" Ambassador, hawking BLENDERS on TV. If course, it was all healthy drinks, and only by implication must we consumers assume that he uses this blender and if we use it we too will BEAT _____(fill in the blank.) Blenders? Seriously, Montel? No higher cause you can put your speaking skills to?

Pedestrian MS? Solicitor Gets Schooled

Every since I moved into my assisted living/retirement home, I have been getting lots of phone calls. Now, my job for 23 years before I retired was answering phone calls. The phone is a great annoyance for me. No, I am not Mr. Lopez. (My voice is of the soprano nature, so, seriously?)

No, I will not reply to automated questions. No, I don't want a free whatever. No, no, and no.
But the other day a nice, young man (why do we say that? We don't know over the phone if he is nice, young, or even a man! PLUS, I sound like a grandma---no offense to grandmas, but when did this start? But I wildly digress.) calls and wants to ask me just a few questions (so many I finally hung up on him) about making Seattle a safer place to live. Well! Now I couldn't refuse that!

He started easy enough, rate our pot holes, do you feel safe at night, then he went in for the kill (his true reason for calling---it was an election season) "Do you feel safe crossing the streets as a pedestrian?" I explained that I can't walk, so I am not a pedestrian but..." He interrupyed me.

"Please just answer the questions yes or no," Oh, it was so on.

The rest of the conversation was me schooling him about MS, transversing a big city in a mobility device, a cane, while being blind, deaf; I had story examples of almost being run over because the walk light gave me too little time to cross, the loud ring walk sign for those with low vision that works so well in one part of the city, the need for faster repainting of old crosswalk lanes---I went on and on. He couldn't have cared less. The questions he had were set in stone and basically wanted me to agree that a certain overpass was needed for "pedestrians."

Will he think about what I said? Will he just move on to the next call, maybe noting only: "Hung Up." Did I mention I hate to answer phones?

What is THIS? Calling All Guessers

Vitamin D Combats Skin Oddities and MS?

You can Google Vitamin D and MS to read all the research about the theory that low vitamin D causes MS, triggers MS, makes MS worse and so on, what I will tell you is my personal experience with D.



As a child I was not breast fed and hated milk, never drank it. Never had cereals much, maybe an "Instant Breakfast" or two. I figure any D I got from food came via cheese or Aunt Vi's cooking.



Born and raised in Indiana, I had no use for the sun. I was fat, it made me sweat, I didn't swim. Basically, I avoided the sunshine.



But, as a kid I never got sick, good grades in school, thick hair, pure skin, long hard finger and toe nails. My teeth never had a cavity until I was in my late 30s.



A few years ago the hair on my arms started curling, became white and coarse. Bumps like small pimple arose on my arms and I was diagnosed with Blepharitis, an inflammation of the eyelash follicles, along the edge of the eyelid. The cause is overgrowth of the bacteria that is normally found on the skin.



I saw my primary care Dr. and a dermatologist about all of this and they had no suggestions. "....normal aging..."



Yep, within 6 months of being in the sun 10 min. minimum each day, all those problems are GONE. (I also take 2 1000IU vitamin D daily) My MS is still here, but I declare that it is less draining on me.

The test for your level of vitamin D is an easy blood draw.

Mom's Brain, Summer Flowers, and Rosemary Kennedy Mystery

A friend brought these flowers from her husband's garden two weeks ago. She said she would bring some new ones every week. That didn't happen and now Summer has ended. My life is a full-term pregnancy of such events. I always think "it" is something that will happen again and again, but usually it becomes a "once in a lifetime."

Thinking about when my mom's brain began to become infected, I recall my last birthday card from her. It was like none before. It was full of loving sentiments (instead of Snoopy or jokes) and made me cry. She signed it, "I love you," and she has never even spoken those words to me.
I really didn't know what to make of it at the time. Now, I think she knew.

It has been suggested by my crazy blooger peeps (you are following ME, you MUST be crazy) that I "review "True Compass," by Edward M. Kennedy. That is not going to happen, but this book is influencing my daily thoughts, so...something may slip out.

One of my big questions about the Kennedys was how did they let Rosemary, who was born with mental retardation, spend her life in a "home," and have her brain fried by a doctor? They had millions, they had smarts, they could get the best doctors...how?

This part of the Kennedy story is broached early in the first chapter and covered quickly. It is not discussed in detail, which only leaves my questions all the more intense now. She was, at first, a loving, playful, wonderful child who Eunice played with and helped her with toys. Then Father Joseph Kennedy was informed of a doctor with a new procedure that worked miracles. He had it done to Rosemary and it ruined her.

The book continues that the family always included her and she visited for all holidays; but I fail to understand why she couldn't stay at the family compound instead of an institution. Well, only the first chapter. (Other tellings have pointed out it was a deep regret of the family and a very dark time for all.)

Teddy's recounting of all this began with a photo of his family and a memory of his mother saying, "The summer of 1941 was the last one that our family would ever have together."
Yes, we often think life will continue on in certain ways for a long time, when in fact it can not continue at all in those ways. This used to surprise me, but now it IS my life. I suppose for all of us there is no life withour change and that is how we move forward. Of course, how we handle the changes is what seperates us from being ordinary or extraordinary.

When Alzheimer's Begins. How Do You Know?

I've often wondered when my mother's Alzheimer's began. Of course a specific date and time can' t be determined, but she and I were very close and though I moved across the U.S. in 1982, we spoke on the phone almost weekly and write letters to each other as often. My leaving was no big deal. She had been anxious to leave her family home, and did so at 17, moving in with and traveling the states with her Aunt Violet. My mom's mother had died from pancreatic cancer many years before and Mom never cared for her beloved father's quickly-found new wife. My mom...only happy in life when she was a child, before her mother died. But, Mom and I survived her young adulthood together. Surely I would notice any mental slipping.

First, you must know Mom was never repaired emotionally after her husband, father of her 3 children, 2 boys and me, left her for his mistress already the mother of their baby girl. Perhaps she never was repaired after her own mother died, a horrible death from cancer. I'll never be sure what broke her with such finality, but she never was whole as long as I've known her.

Around 1993, she bought a small house. She had never had a house of her own. The large one where I grew up was huge with 3 apts. and a 3 car garage, purchased on the cheap from rich people who felt sorry for my mom. But, Mom had a dream of owning her own small single family home. When She told me her plan to buy this house, I was quite shocked. I even tried briefly to talk her out of it. She had sold the old homestead years before (gaining little money from it as the neighborhood had gone to pot along with the big house) and had lived with Aunt Vi (then in her 80's) in apartments ever since.

Mom could barely take care of her apts. without Aunt Vi's help, a house seemed too much. She did buy it. It was adorable, in a nice part of town (to Mom that meant nearer to farms), and for the first few months all seemed well, though Aunt Vi was doing all the housework.

Then Mom became obsessed with a nearby school wanting to buy her property and enlarge their school. Now, no one had approached her about this, so her growing fears seemed a bit odd. It was around this time that Aunt Vi began complaining to me about my mother's obsessive paranoia about the school wanting her house and other insignificant occurrences. I didn't think much about it, though letters began arriving--one from Mom, the other from Aunt Vi, at least once a week, and each letter told a story completely contradicting the facts laid out by the other. It was laughable. Two such different personalities: Mom timid and quiet, Aunt Vi bold and loud, how could they NOT clash? Yet, for all the previous years, they didn't. Mom just followed. Suddenly she was revolting.

Looking back, was this the beginning? Was Alzheimer's already forming in my mom's brain?

Aunt Vi began to hint at significant changes in her niece, my mom, but with Mom always coming back with an opposite tale, was it Aunt Vi who was beginning her aging brain blips? How could I know from almost 3,000 miles away? (Plus, I was in the throes of multiple sclerosis. Who was I to judge brain deficiencies?)

Yes, I will always wonder. Yes, the hundreds of letters are still in boxes. Pieces of the puzzle continue to be found since my mom was born. I search myself, as I suspect many do after their parent has Alzheimer's (IF she has that, we really don't know until they are gone, if then.) , for "signs," and so far I see none.

My Mom called me one day around 2002, and said that she thought she had Alzheimer's. I laughed and explained what kind of forgetting Alzheimer's was (her concerns were losing keys and such) and Alzheimer's was all over the news, Aunt Vi had contacted me with similar concerns....but now I wonder what else Mom was forgetting and if forgetting where your keys are IS different, like being tired IS different when it is neurological versus the "other" tired.

What was I saying? Lost my train of thought there...for a moment...

Invisible Illness Awareness, Check Out These Blogs

"This blog is for the other people of bipolar disorder, the family, friends, and any significant other who have been through bipolar." Bipolar Blog by Liz http://www.bipolarblogbyliz.blogspot.com/

Multiple Sclerosis can be an invisible illness throughout its different stages. Check out a woman's blog who has been diagnosed just last year. Bifurcate In the Road http://kmilyun.com/

To learn more about the many invisible illnesses out there, just click on the 100 Chronic Illnesses List scroll on my side bar.

True Compass:Another Kennedy Inspiration

I would have paid to read just the prologue to True Compass by Edward M Kennedy. He wrote that right before he died. Reminded me that the Kennedys were not inspirational just because they gave powerful speeches, but because they led inspiration lives. Can't wait to read on!

World Changed by Invisible Illness

Throughout history some of our greatest artists, politicians, military leaders and archtitechs, have produced powerful life changing moments in our lives, while living with a chronic illness. Even some sports figures we would later find out broke records while their bodies fought an illness.

It has often been noted that certain great artists were, "insane," and genius can go hand and hand with brilliant creativity. But now as our understanding of illness has grown, I can't help but wonder if some historical creators were bipolar? Manic depressive? The possibilities are endless.

Breaking away from the firm grasp of illness, many will give up and go limp, slowly dying and never remembered. Others are so crazed with escaping that they break away by gripping their slightest outlet for their hour of freedom and flowing from their broken bodies is the blood of art. buildings, books, inventions.

None of us will hide from death or illness at some time in our brief lives. "Invisible illnesses" are only invisible to a few and never to the ones who lives with them.

I hope my blog has made you aware of the many facets of invisible illnesses, how they affect not only those who must breathe in and out with them each day, but how they affect our world.

Nude Ink Drawing Body in Pain

By Karenlee Kitto

Sex Offenders Smuggle Porn, They Have PCs Too!

Sometimes you can't believe what you hear on the news. And not just because the facts may be wrong, I'm talking---GIMME A BREAK.

Seattle: Six sex offenders who are being detained at a not-jail-but-center for sex offenders, are being arrested for having porn in their rooms. Say WAAAA?

Well, I say kudos to our prison system! The men are already finger-printed, mug-shot, and locked up.

They have been arrested following a two year investigation of child porn sneaking into the facility. No one knows how the porn was smuggled in. (Ooo Ooo Ooo! Let me guess, let me guess!)

Lady Gaga Wheelchair Actress, Why it Matters

The VMA had much to comment on, but what grabbed me most was Lady Gaga and the wheelchair dancer on stage with her other dancers. My first reaction was, "Wow! A wheelchair dancer!"

Then I had to take a few days to think about it. Today I planned on posting about it, but I see my friend blogger, "Wheelchair Dancer," has covered it pretty well. Being a true wheelchair dancer (check out her blog for many links to various dance groups and events http://cripwheels.blogspot.com/) she dissects the music video professionally.

Try as I might to search for information on who the "wheelchair dancer" with Lady Gaga performing Paparazzi was, I got nowhere fast. Watching the video on UTube, it appears to me to be less a dancer than an actress. I say that because I could have done the bit and I am an actress not a dancer.

Now, all this matters to those of us in wheelchairs, just as a straight actress playing a gay role matters to those of us who are gay. It shadows wearing blackface.

While African Americans never need to worry about the inability or unwillingness to hire a black actress for a black role, gay people still live in that shadow of prejudice, just as a person with a disability does. That said, I was thrilled just to SEE a wheelchair on the stage, and a rider involved in the performance. (Only today would I see the entire video and realize it reflects Gaga's need for a wheelchair after a fall caused by a paparazzi attack.)

Oh well, for a moment I hoped. (Timmy on South Park still rules, but he is a cartoon, sigh.)

No Bleep, Sherlock, Try a Chronic Dose

"Stuff like teaching, students, colleagues, disability, invisible illness, chronic pain, balancing work and everything else, working at home, and just more of the usual daily stuff."
http://stuffhappens1.blogspot.com/ Sherlock's Stuff


"The point of Invisible Illness Week is to spread awareness to others. This week, I think I was the one who needed to appreciate that sometimes the push and pull, the tension between being a patient and being a person, the re-calibrating of roles—it all settles out. One day at a time. " Read entire post at A Chronic Dose by Laurie Edwards http://achronicdose.blogspot.com/


Check out more bloggers with invisible illnesses. Awareness is knowledge is power.

Johns Hopkins Fibromyalgia Education Success

Johns Hopkins and National Fibromyalgia Association Announce Successful Outcomes from Landmark Educational Initiative:

Link here
http://www.reuters.com/article/pressRelease/idUS97725+16-Sep-2009+BW20090916

Who is the Jackass? WHAT is a jackass?

I am so sick of people trashing on our President Obama for ridiculous "stuff." He has asked us to help him, help our nation to overcome the mess we were in Jan. 2009. So now he is supposed to feel bad about calling Kanye West a "Jackass?" GIMME A BREAK

The term fits perfectly. Definition of jackass: a fool Definition of a fool: a harmlessly deranged person or one lacking in common powers of understanding b : one with a marked propensity or fondness for something

West lacked the understanding that the cameras were not meant at that moment for him or Beyonce. He is very fond of Beyonce's art. President Obama only called West what many of us have. Let's move past it---WHY would a reporter who is NOT a jackass even ASK our President about this? And don't we all get jackassish once in awhile? GIMME A BREAK

Make My Cure Now. You Can on Paper.

What holds up drug research? The U.S. seems to lag behind other countries. Any ideas? (There are plenty of rats in NYC)

Eli Lily is preparing to cut 5,500 jobs. They will give many reasons why, but let us cut to it: they have patents running out soon and they are losing money as investors race away to generic drug companies. Lily will reorganize to form units that make new drugs. New drugs=MONEY.

Maybe drug patents should be shorter time frames. Looks like that would push the giants like Pizer to figure out a way to get new drugs to our hands faster.

I hate living in a time when my cure is "decades away," while mice are cured now. When I was 33, it was a GREAT time to have MS...20 years later...and 20 after that, I will have other health issues associated with aging and my prime time will have passed. I read of cures and new discoveries every day, but where are they besides on paper?

My neurologist told me in 2003: "We have a cure for MS, on paper." I have a big thank you, on paper.

LIVING with Fatique and Bipolar. 2 Great Blogs

Learning to Live with CFS
"I have had Chronic Fatigue Syndrome (CFS or CFIDS) since March 2002. My 14-year old and 11-year old sons also have CFS. This blog is about how our family is learning to live with chronic illness, with a focus on living and enjoying our lives in spite of these challenges."
http://livewithcfs.blogspot.com/

Am I Still Ill? http://amistillill.wordpress.com/ "I am female, have a diagnosis of bipolar 1 and live in North London. I have tried to cope with the illness both with and without psych meds, but as I recently relapsed, I currently take 1500mg of Depakote. Managing the illness frequently takes up a great deal of my time and energy, and as a part of that I attend two different Twelve-Step Programs. However I do also manage to take a regular and lively interest in offbeat foreign films, vegan cooking, growing our own veggies in the garden, being nice to the environment, reading voraciously and addictively listening to BBC Radios 4 and 7. I am also a keen peruser of and contributor to the Madosphere!"

Kanye Leno Taylor and Classy Beyonce

Kanye West made a fool of himself at the MTV Video Awards when he interrupted Taylor Swift's award speech for "Best Female Video," grabbing the mic from Taylor and shouting that Beyonce had the best video. Then he handed the mic back to a stunned Taylor, and she walked off stage.

The cameras panned to Beyonce, whose jaw dropped. Later, Beyonce would win for, "Best Video" (Yes, hard to figure that you can have best but not be best female..., but votes can be split and Taylor's video wasn't even nominated for "Best Video." I guess different criteria are taken into consideration.) and Beyonce called Taylor back to center stage, handed her the mic and walked off. What a class act---THAT was the best performance all night.

Jay Leno's new show premiered Mon. night and Kanye was in doing the Hugh Grant--apology. The best moment? When Jay asked Kanye what his mother would have said about this. The entire studio fell silent as Kanye dropped his head and appeared overcome by the thought. Jay had to finally reach out and help him formulate a response.

Kanye then said that fame has been hard for him to deal with and he hopes to grow and be a better person. (I'm paraphrasing.) His apology seemed heartfelt and genuine. I think, I hope, all young celebrities can learn a lesson from such a thoughtless act. Pretty simple for we of the unknown tribe: Treat others as you would like to be treated. Show respect.

(Jay Leno is on M-F on NBC at 10PM)
(Kanye West and Taylor Swift and Beyonce videos can be seen on MTV, CMT, VH1, and Utube)

Looking Good and Feeling Bad

Well, you look good... http://wellyoulookgood.blogspot.com/
And the beat goes on. How do those of us with invisible illnesses respond to that? I always want to say, "Well, I wish you could see me on the inside---not pretty."
Check out this blog written by a woman with several immune system disorders (they tend to bundle up.)
"In February 2005, I was diagnosed with three chronic illnesses. The first illness, scleritis, is an auto-immune disease which causes thinning of the white layer of my left eye. Fibromyalgia, my second diagnosis, is an increasingly recognized chronic pain illness which is characterized by widespread musculoskeletal aches, pain and stiffness, soft tissue tenderness, general fatigue and sleep disturbances. Last but NOT least migraine headaches."

Patrick Swayze Dead at 57 From Pancreatic Cancer

He leaves those of us from a certain generation with movie memories of a sexy, romantic dirty dancer. Pancreatic cancer is still one of the deadliest cancers, and rarely found early.
http://www.pancan.org/ PC Action Network

Mr. President to YOU, CNN and ABC--RESPECT

If I hear ABC or CNN reporters say, "Mr. Obama" again, I am going to puke. How dare they be so disrespectful of the title of our PRESIDENT? How dare they?

Lupus, CFS, Fibro, MS, Gulf War Syndrome, I Can't See You

My use of a power chair (that is an electric wheelchair, needed because my one side is too neurologically weak to use a manual---I'd be circling air all day) added to my young age of 52, makes me stick out like an elephant on a ferry. Everyone knows there is something wrong with me.

At my job, my cane, then scooter, gave me away. I have MS and after having it for decades, it no longer was an invisible chronic illness. So I have seen chronic illness from both sides and both have their pros and cons.

Many of my co-workers had invisible chronic illnesses that I only knew about because they were brave enough to share the fact. After years, many invisible illnesses will wear the body down so that the obvious can no longer be hidden. After years, many invisible illnesses will be seen on MRI's or in our genes and only then will they become visible to the all-knowing (NOT) medical community. You know them, they are the ones who tell you that it is "all in your head."

After veterans return from war, many complain of symptoms that together have no "disease" or "condition" name. Eventually our researchers will decide on "Gulf War Syndrome" or "Post Traumatic Stress Syndrome," finally giving the ill something to hold onto besides the gnawing idea that they are just weak or crazy.

Speaking of that delicate word, "crazy," isn't that what anyone who is bipolar? My oh my, how society filled the insane asylums in the not so distant past with those suffering with bipolar, stress, multiple sclerosis, Alzheimer's, to name a few.

"I get tired after mowing the lawn," says the well-meaning, but ignorant person to someone with Chronic Fatigue Syndrome. IT IS NOT THE SAME.

"I tossed and turned last night too," says another to someone with severe Fibromyalgia. IT IS NOT THE SAME.

"I'm not good with names either," to an Alzheimer's patient. Yep, IT IS NOT THE SAME.

H.G. Wells' Invisible Man had it easy, though he did go insane by story's end, he KNEW what he had. A chronic invisible illness is often unseen even to those who carry it with them. Without a doctor to name and thereby give help to their symptoms, what do they have? What is wrong with them? This before time is a living hell.

Most people with a chronic invisible illness will tell you how ecstatic they were when finally some medical, science-driven test proclaimed a name to their agony. All they must deal with of a hellish nature is the unbelieving looks of friends, family, and co-workers. I mean, after all, anyone can fake the invisible, right? Those are the moments you learn who your true friends are, how solid your marriage is, how supportive your employer will be.

Read some of the 100 Chronic Illness Blogs listed on my side bar, learn about some of the feelings they must deal with along with dealing with a chronic (that means it attacks and will never stop without a cure) invisible (that means they usually have no "Walks" "Telethons" or "T-Shirts;" some still have no newsletters or support groups) illness. (that means they are not well)

http://invisibleillnessweek.com/?p=1818 Learn More
http://fibroviv.blogspot.com/

Moonlight Blog Award

I received a beautiful award from blogger, Herrad at http://accessdenied-livingwithms.blogspot.com/ here is the description of the award:

MOONLIGHT

"Moonlight in this case represents the glorious brain-sharpening, mood-enhancing experience one feels when reading or seeing something inspirational in other blogs. Something that sets the tone for the rest of your day, puts a smile on your face, stimulates your work, or makes you feels awesome about life. It is not often one feels wonderful. But some days, some blogs do just that. I want to give “moonlights” to all the special blogs I encounter. There are no obligations attached to the recognition. But if you feel like it, you can pass it on to whoever has also given you that something special, what in Spanish they call “eso”, or “it”. Whatever “it” is that lifts your spirits and helps you to up your mental game. "

This award originated from Maria's INTO THE MOONLIGHT http://maiasintothemoonlight.blogspot.com/ an absolutely beautiful blog, a feast of paintings for the eyes.

I give this award to:

WHEELCHAIR DANCER http://cripwheels.blogspot.com/ Always thought-provoking and perfectly written. Thank you, Dancer!!

Wheelchair Blogger and Wheelchair Bound

This is a post from one of my favorite Blogs: Wheelchair Dancer (see side bar) and I totally agree with her new view on the phrase, "Wheelchair bound."

"I've been hearing the word "bound" a lot recently -- college-bound, homeward bound, bound for Ohio, bound for Detroit, etc. "Bound" in this sense is used to suggest "prepared or purposing to go, starting, directing one's course, destined" (OED: subscription only). My nasty little mind immediately begins to wonder about that dreaded "wheelchair bound." What if "wheelchair bound" meant not "trapped in" or even "strapped to" your wheelchair, but "prepared for," "destined," "voluntarily directing one's course for?"

To a certain extent, I suppose, the TAB to disabled thing means that, should people live long enough, they will all "end up" bound to their chairs; it is a destiny of sorts. One to which we voluntarily head? Well, that I dunno. But what if this were the general understanding of how these things work?I can begin to imagine a world in which wheelchair use is not a problem; it is an accessible world, a place in which disability is simply diversity. I cannot imagine a world in which wheelchair bound is said with the pride and sense of accomplishment as college bound. A place in which the frailty of the body is as accepted/desired/normalized as the destination of a flight. Of course, we all end up in wheelchairs. That's just what happens."
http://cripwheels.blogspot.com/

What do YOU think?

Anderson Cooper's Cough

Anderson Cooper, reporter for CNN, just returned from his duty in Afghanistan. He had a hacking cough just like most people get after breathing in Afghan air. People on Cooper's plane seemed annoyed by his coughing. Poor babies, and what have YOU done lately?! Good grief.

STRONG TOGETHER AS ONE, LET US FLY

The idea for putting together a list of 100 chronic illnesses came as I was watching Richard M. Cohen, author of “Blindsided: Lifting a Life Above Illness: A Reluctant Memoir,” speaking about the next book he was working on, during a live appearance on the Don Imus TV show.

Mr. Cohen spoke of the horrible job the medical community and our country does of understanding the lives of those who live with chronic illness. Mr. Cohen has MS, and I open his book often for inspiration. I couldn’t wait to read his next book as the topic was something I had been learning to grapple with for most of my adult life. Before I was diagnosed with multiple sclerosis, my life partner had been dealing with many illnesses and my anger with the medical community and with the thoughtless way her own family treated her had plagued me. How could people be so cold? How dare they judge her so harshly? I anxiously awaited the examination of such inhumanity. What could I do?

Starting an employee association at my job was so life enriching for me. Getting to know so many people with different illnesses, conditions, opened my eyes wide to the loneliness and desire to be heard that we all felt. We all wanted to be able to do our jobs without constant barriers. Many were so grateful just to know someone cared about their struggle.

Fast forward to 2007, I enter the Blog world where people of all illnesses can search to find others to bond with, share stories with. I began searching for others with MS and a new kind of family is born. A blogger called BrainCheese started a Blog Roll of 100 bloggers with MS. As I read the many blogs, I wondered if they realized how their stories of daily challenges are so similar to people who have other illnesses. Together we are stronger than when we try to fly and defy alone---perhaps I could find 100 blogs from people with stories to tell that will be different, yet exactly the same where it matters: strong at the broken places. (This happens to be the title of Cohen’s new book: “Strong at the Broken Places, Voices of Illness, a Chorus of Hope.)

My search for blogs took longer than I expected. What would I look for? The blog had to be personal, no sales or medical information types, no agendas involving religion or societies, diversity of bloggers and a spirit of life beyond an illness box was a must. I wanted to recapture the experience the disability group gifted me with, and share that with the blog world.

Everyone I contacted agreed to join the list, save one who did not consider herself as having an illness. She was just “…wired differently; and illness implies there is a cure possible.” I responded that I totally respected her feelings, but a major foundation collects donations for research for a cure, plus others in her shoes have agreed to be on the list…” I told her I was open to suggestions, but she never emailed me back. Her thoughts will make a worthy post. I gave much consideration about the list name, “Illness? Disease? Condition? Again I referred back to Cohen’s book, which I pre-ordered and read within days of receiving it. Like it or not, we are not well. Our bodies are not functioning as they were meant to. If they were, we wouldn’t have to visit doctors. Her attitude and her blog will be missed.

“Strong at the Broken Places, is the story of Cohen’s meetings with five people with different illnesses, ALS, non-Hodgkin’s lymphoma, Crohn’s disease, bi-polar disorder, and muscular dystrophy. He interviews each, asks the toughest of questions, then finally they all meet at the Harvard Medical School where they take center stage to tell medical students what it is like to live with a chronic illness. After reading the book there will be no doubt in your mind that they made a difference; that no soon-to-be doctor will forget the heartfelt truths they heard. I want to hand a copy of the book to all my doctors.

I am very excited to have the 100 blogs on my site; I can’t wait to get to know them. We all are reaching for the same thing—that flight to normalcy.
Cohen’s own ideas were challenged by his new friends. He could not get to know these people without being profoundly moved, just as I was by those who joined the disability group at my job.

If I have made any mistakes in links, etc, please let me know. I really am doing this by the seat of my pants. Many thanks to all who have joined in this effort. There is always room for more understanding of our family of travelers on this journey called LIFE.

“I awake each day and I hate being a sick person. But dealing with disability has become a calling. And after writing this book and learning from the gentle people who trusted me and themselves enough to embark on this journey, I now understand that we sick travel together. In spirit we are one.

And on that day when we cannot walk and words can come no more, we still stand together. When we no longer break bread with one another, still we will sit at the same table. Our hearts will stay strong. In thought and with spirit, we will fly. Our own compasses point the way, and the winds forever will be at our backs.” Richard M. Cohen-

Ellen DeGeneres an American Idol

Taking the seat left vacant by Paula, Ellen will appear on one of the top rated shows ever and with AI ratings slipping, Simon Cowell has proven his casting savvy once again. I never was a big AI fan, but I will be now.

MS Gene Research Survey. We need your help!

One of our favorite blogs Brass and Ivory brings us this important survey information. It is easy, fast, survey. Take it today! Thank you. Diane-

Earlier today, I was contacted by Virginia Hughes who is a freelance science writer with a special interest in genomics and disease, specifically autism and schizophrenia.
She is participating on an ethics panel at the 2009 Cold Spring Harbor Laboratory (CSHL) conference on Personal Genomes. Virginia says that "they've ask me to comment on what I think is the current and future appetite for genetic testing among people who belong to various disorder advocacy organizations, such an MS organizations."She is looking for solid numbers to include in her presentation, so created a survey about our thoughts on Multiple Sclerosis, Genomics, and Genetic Research.
The survey is simple - only eight short questions. Virginia would appreciate receiving at least one hundred responses so that the results might show some meaningful trends. Perhaps we could spread the word and get even more than that.
Please complete the survey and be sure to mention the MS blogs and groups where you often read MS-related information.
Thank you,
Lisa Emrich http://brassandivory.blogspot.com/
Copy/paste this post in its entirety and post it on your blog and at your favorite MS forums, message boards, and social networks.

100 AAA Rated Chronic Illness Blogs

Diabetes I and II, Muscular Dystrophy, Chronic Fatigue Syndrome, Fibromyalgia, Lupus, Lymphadema, Bipolar Disorder, Autism, Crohn's, Parkinson's, ALS (Lou Gehrig's Disease) , Duchenne Muscular Dystrophy, Asthma, Rheumatoid Arthritis, Schizophrenia, Tourette's, Heart Disease, Cancer, Depression, Asperger's, Huntington's, Kidney Disease, Sjogren's, Cerebral Palsy, Epilepsy, Addison's, and other chronic health conditions are discussed in a very personal way in the over 100 List---located by clicking on the scroll on my sidebar.

You do not have all these conditions, but be assured that you know or have know someone who has one or several of the above. If you think they are so different from you, you are wrong. If you think you are immune to any of the conditions, you are wrong. I never thought I would have cancer and multiple sclerosis by the age of 40, I was wrong. We are all human and all vulnerable to illness. Sometimes it is just a cold, sometimes it is life-changing and life-defining.

If you share a broken place in your body with any of the Bloggers on the 100 Chronic Blog List, then read their posts, join their struggle to stay strong at the broken places. If you are well, share your humanity.

Tomorrow I will re-post what inspired me to form this 100 List. It is good to find inspiration in the spirits and souls of those who must live with chronic illness.

10 More Tips for Living with Secondary Progressive MS and the Most Important One

There are so many tips I could give you, by the time you become secondary progressive they will probably be outdated. New products are coming out every day. Here are a few you'll need:

Fans, tall, short, mini---you'll need to stay cool.
Water---drink it often, wear it frozen in ice packs, a frozen wet wash clothe is dandy.

A quad cane---I have several, first I walked with one, now they support me as I transfer.

Dated pill holder---as the memory goes, you stop working, days disappear.

Cards, poker chips, pick-up sticks, anything that you can play with/move around, to keep your fingers active.

Post-it notes or tape/paper---you will need to write things down when you think of them. If you hire caregivers you will want to post notes showing where you keep the broom, spoons, socks, etc.

VELCRO---get shoes and clothes with velcro closures.

An electric or battery operated toothbrush. Flossing is impossible, but soft tip gum massagers can be pushed between your teeth and gums to do a good job. (Sounds "duh" but a dentist who works with disabled kids gave me this trick.

A pressure cushion for your chair, you DON'T want bed sores.

Get all your vaccines, your MD can tell you which you need. (My mom had no idea, no records, luckily there is an easy blood test to check.)

Keep your brain active in new things. A bedridden woman at my assisted living home told me she wants to learn French. She can barely speak, can't raise her head or arms, but she has her canary and wants to speak French! That is the attitude that keeps you going.

What you will need the most is a hopeful attitude, also called a positive attitude. Start working on that now, especially if depression is part of your MS---you will need friends/support group/meds/chocolate treats/pets/whatever makes you smile. Music can lift your spirits. Your spiritual beliefs can lift your spirits. A hoist can lift your butt. Keep your sense of humor! The more you laugh, the better.

And never, EVER, let someone label you. The medical world may ordain that I am SPMS, but one day my little toe on my worst leg (the first body part to go) MOVED! The world of multiple sclerosis is full of "miracles" and unexplainable happenings. Your brain is still a huge unknown.
Don't let the unknown claim to know you.

Obama's Speech Released from White House--YOU DECIDE

Obama Speaks to Kids, While Adults Need to Grow Up

President Obama is going to make a "back to school" speech today for our nation's children. Had JFK done that in my day, I would have been so excited and would have remembered it to this day. I also probably would have skipped less school and stuck around to pick up a college degree.

Unfortunately, many conservatives and Republicans have decided to turn this into a "he has spurious an agenda" brouhaha. Well, the joke is on them. This kind of ridiculous behaviour is childish and doesn't lend itself to garnering any new Republicans. I don't want to live in a one-party country; Republicans need to stop defending such nonsense and grow-up.

Zonulin's Identity a Key to Solving Mysteries of Autoimmune Disorders

Why do so many people swear that their MS went into remisssion when they____(fill in the blank)? A new study from the University of Maryland sheds some light on one constant song, "When I stopped eating gluten..." Read Below.

"Contact: Karen Buckelewkbuckelew@som.umaryland.edu410-706-7590University of Maryland Medical Center
UM scientists pinpoint critical molecule to celiac disease, possibly other autoimmune disorders
Findings reveal further detail about protein linked to inflammatory disorders
It was nine years ago that University of Maryland School of Medicine researchers discovered that a mysterious human protein called zonulin played a critical role in celiac disease and other autoimmune disorders, such as multiple sclerosis and diabetes. Now, scientists have solved the mystery of zonulin's identity, putting a face to the name, in a sense. Scientists led by Alessio Fasano, M.D., have identified zonulin as a molecule in the human body called haptoglobin 2 precursor.
Pinpointing the precise molecule that makes up the mysterious protein will enable a more detailed and thorough study of zonulin and its relationship to a series of inflammatory disorders. The discovery was reported in a new study by Dr. Fasano, published the week of September 7, 2009 in the online version of the Proceedings of the National Academy of Sciences. Dr. Fasano is a professor of pediatrics, medicine and physiology and director of the Mucosal Biology Research Center and the Center for Celiac Research at the University of Maryland School of Medicine.
Haptoglobin is a molecule that has been known to scientists for many years. It was identified as a marker of inflammation in the body. Haptoglobin 1 is the original form of the haptoglobin molecule, and scientists believe it evolved 800 million years ago. Haptoglobin 2 is a permutation found only in humans. It's believed the mutation occurred in India about 2 million years ago, spreading gradually among increasing numbers of people throughout the world.
Dr. Fasano's study revealed that zonulin is the precursor molecule for haptoglobin 2 — that is, it is an immature molecule that matures into haptoglobin 2. It was previously believed that such precursor molecules served no purpose in the body other than to mature into the molecules they were destined to become. But Dr. Fasano's study identifies precursor haptoglobin 2 as the first precursor molecule that serves another function entirely — opening a gateway in the gut, or intestines, to let gluten in. People with celiac disease suffer from a sensitivity to gluten.
"While apes, monkeys and chimpanzees do not have haptoglobin 2, 80 percent of human beings have it," says Dr. Fasano. "Apes, monkeys and chimpanzees rarely develop autoimmune disorders. Human beings suffer from more than 70 different kinds of such conditions. We believe the presence of this pre-haptoglobin 2 is responsible for this difference between species."
"This molecule could be a critical missing piece of the puzzle to lead to a treatment for celiac disease, other autoimmune disorders and allergies and even cancer, all of which are related to an exaggerated production of zonulin/pre-haptoglobin 2 and to the loss of the protective barrier of cells lining the gut and other areas of the body, like the blood brain barrier," says Dr. Fasano.
"The only current treatment for celiac disease is cutting gluten from the diet, but we have confidence Dr. Fasano's work will someday bring further relief to these patients. Zonulin, with its functions in health and disease as outlined in Dr. Fasano's paper, could be the molecule of the century," says E. Albert Reece, M.D., Ph.D., M.B.A., dean of the School of Medicine, vice president for medical affairs of the University of Maryland and John Z. and Akiko K. Bowers Distinguished Professor. Dr. Fasano, as a physician scientist, fulfills two of the core missions of the University of Maryland School of Medicine: making basic science discoveries that can impact human health, and finding ways to translate those discoveries into treatments and diagnostic tools."
People who suffer from celiac disease have a sensitivity to gluten, a protein found in wheat, and suffer gastrointestinal distress and other serious symptoms when they eat it. In celiac patients, gluten generates an exaggerated release of zonulin that makes the gut more permeable to large molecules, including gluten. The permeable gut allows these molecules, such as gluten, access to the rest of the body. This triggers an autoimmune response in which a celiac patient's immune system identifies gluten as an intruder and responds with an attack targeting the intestine instead of the intruder. An inappropriately high level of production of zonulin also seems responsible for the passage through the intestine of intruders other than zonulin, including those related to conditions such as diabetes, multiple sclerosis and even allergies. Recently, other groups have reported elevated production of zonulin affecting the permeability of the blood brain barrier of patients suffering from brain cancer.
"We hope pre-haptoglobin 2 will be a door to a better understanding of not just celiac disease, but of several other devastating conditions that continue to affect the quality of life of millions of individuals," says Dr. Fasano. "This is quite a remarkable molecule that was just flying under the radar. We would have never have thought it would be the key. Now that we have identified this molecule, we are able to replicate it in the lab to use for research purposes. We hope to learn much more about it and its potential for treating and diagnosing celiac disease and other autoimmune conditions. This molecule has opened innumerable doors for our research."

Hear The Temptations Do Their Thing-Ball of Confusion

The Band Plays on 2009, Temptation's Confusion

Ball of Confusion, sung by one of favorite groups, The Temptations--Read the lyrics, could have been written today.


People moving out, people moving in
Why, because of the color of their skin
Run, run, run but you just can't hide
An eye for an eye, a tooth for a tooth
Vote for me and I'll set you free
Rap on, rap on brother, rap on
Well, the only person talking about love today is the preacher
And it seems nobody's interested in learning but the teacher
Segregation, determination, demonstration, integration
Aggravation, humiliation, devastation of our nation
Ball of confusion
Yeah, that's what the world is today
Hey, hey
Ball of confusion
Yeah, that's what the world is today
Hey, hey
The sale of pills are at an all time high
Who put the filling in pie in the sky?
The cities aflame in the summer time!
And the beat goes onAnd the beat goes on
And the beat goes onAnd the beat goes on
Economics, Reaganomics, Birth Control,
The Status Quo
Shooting rockets to the moon, kids growing up too soon
Politicians say
And the band played on
So, round and around and around we go
Where the world's headed, nobody knows
Ball of confusion
That's what the world is today
Hey hey
Ball of confusion
That's what the world is today
Hey heyHey hey
Fear in the air, tension everywhere
Unemployment rising fast, the Beatles new record's a gas
And the band played on
And the band played on
And the band played
Eve of destruction, tax deduction, city inspectors, bill collectors
Solid Gold in demand, population out of hand, suicide
Too many bills,
Everyone moving to the hills
People all over the world are dying in the war
And the band played on
And the band played on
And the band played on
And the band played
Ball of confusion
That's what the world is today, hey, hey
Ball of confusion
That's what the world is today, hey, hey
Ball of confusion
That's what the world is today, hey, hey
Ball of confusion
That's what the world is today
Hey Hey

Rainbow in Seattle 9/6/09 6:05PM

Let's All Do the Babinski!!

You put your left foot in and then your right foot out.
You feel the doctor's cold metal
And you shake it all about.
Your big toe jumps forward.
The other toes fan out,
And that's what we call
The Babinski!

If you are under age two,
Then all is well.
Older you are,
Then all is hell.

Get to a neurologist.
You don't need a psychologist.
Nerve damage is the cause.
MS breaks body laws.

Soooo, join me now!
Watch your big toe reflex out
And the rest do a split.
Turn to the left as you grab your DX.

And that's what we call the Babinski!



******Symptoms of MS may mimic those of many other nervous system disorders. The disease is diagnosed by ruling out other conditions.
People who have a form of MS called relapsing-remitting may have a history of at least two attacks, separated by a period of reduced or no symptoms.
The health care provider may suspect MS if there are decreases in the function of two different parts of the central nervous system (such as abnormal reflexes) at two different times.
A neurological exam may show reduced nerve function in one area of the body, or spread over many parts of the body. This may include:
Abnormal nerve reflexes
Decreased ability to move a part of the body
Decreased or abnormal sensation
Other loss of nervous system functions *************

Why Do I Miss The View?

Now, I know I have sworn on a stack of Bibles (WHO has a stack of Bibles lating around? Oh, right, I once had a job on a facory line wrapping Bibles, white and black, white and black...) that I would NEVER watch that witless, moronic show again EVER! Look at me now, turning to that channel, frowning that there is no Whoopi, Sherri, Joy, Baba, and yes, even conservative Elisabeth. WHY? What brain cell am I lacking?

Apparently the show of women sitting around discussing the latest news events, reminds me of a wonderful time in my life. Aunt Vi, Virginia, my mom, friends, relatives, sitting at a table shooting off our mouths about what we thought of life's goings ons---the good old days. We had conservatives, moderates, a lonely Indiana liberal (ME! Though I think my mom was too) kooks and many points of view. We raised our voices, laughed, it was all good. I miss that.

I miss shooting the breeze (slang from early 1900s, shooting the breeze is not doing much of value with your gun) with my co-workers, they were family to me and they are gone too. The View fulfills my desire to weigh in and hear what others think. Not intellectuals or professors, just every day people and while these are not every day women, their minds lean toward the ordinary.

The show went up a notch when Whoopi joined in. She has a knack for keeping it real while knowing when to make it light and change course. She is confident about who she is, has no agenda, and makes me laugh with a look. I have always admired her acting. (She was ROBBED of her Oscar for The Color Purple!)

Joy has her stand and will not change. Elisabeth won't change either. (Both would lose their careers if they dared) But, Sherri is a work-in-progress, and I am enjoying watching her think differently than when she first joined the show.

Back I shall go into the world of The View, adding my due-to- recession 1 cent. First live show starts Tues. Sept. 8---after all their moaning about being snubbed by the Emmys, they finally win for Best Talk Show Host and with all disrespect---DON'T BOTHER TO SHOW UP. That shows no class and they don't deserve a shot at it again. My penny.

Hair Cut with Bird Nest in Spring

Finally I had my hair cut. Even the inexpensive salon in my retirement home was too much moola for me. I bought a set of clippers and coerced, er, politely asked a friend with two kids (parents, you know what I mean) to buzz away. Now I have a bag of hair for next Spring's finches. They will brag about their nests!

The Gambler and the Girl with MS

Such a late post, I feel bad. Anyhoo here goes: It is cloudy and threatening a rain storm in Seattle. (No, that is NOT usual---we want to keep people out of our Seattle)

Finally got together with a neighbor, the only African American here, who wants to get into country music. Ugh. I agreed to duet with her. She is practicing her guitar and we have "The Gambler" ready to roll.

She is one of the sanest people here (or at least our insane humor is the same) and I am overjoyed to call her friend. The bridge players were so mean to one fella (92) last night that I doubt I can go back. He was a liberal, maybe a socialist and I loved him from first day I met him. I was so sad to hear he and his wife are moving out this month.

"...know when to walk away, know when to run."

Bridge Grand Slam for Woman with MS

So I had (took? did? played? endured? survived?) my first Bridge game a week ago. I was, of course, horrid. The dynamics of the other players (for those of you new to my blog: I live in a retirement/assisted living home with over 80-somethings) was fascinating. The people have always brought me back to cards. These people are new friends/neighbors to me, I still don't know many of their names or who is married to who, so there is much to be explored.

Wow, was it ever different from the "Workshop" I attended, which was a very civil, rule-ridden,speak softly when spoken to event. The game? CRAZY BABY With shouting, chair tossing, arguing, I LOVED IT! It was just like being at work staff meetings "in the day" and my childhood card games with the elder generation. (Aunt Vi's older siblings and friends) FUN

Nothing is more fun than seniors breakin' it down! LOL They become ageless and full of youth.
Mix that spirit with the wisdom of age (or at least experience) and it doesn't get any better for a people observer like me. But, back to the actual game.

I thought I was just ok for my first game. During lunch, however, a passive aggressive remark was made to my partner about my "...stupid play..." Oh, was it on. And Ms. Passive-Aggressive was going down. I stewed about it for days, then reminded myself that I was out to get an 80-something widow who once was Queen of her domain, now trapped in a home, alone, while her family lives without her, visiting when they can. I felt her pain, her loneliness---the kind one dares not admit. By the next game night I had calmed down. If she feels a moment of power acting that way, so be it. We will gift her that, no biggie. (Partner just laughed when the jab was given---well played!)

Game 2 was last night. (Game 1 was even a mistake. I signed up too late and was told I couldn't play, but I showed up anyway and when they grew tired of waiting for a player---I was in! LOL)
I asked the woman who puts out the sign-up sheet to sign me up. She did. I was first on list this time. (Politics in play everywhere.) Ready? Ready? I won 2 out of 3 games! (Well, 1 was a tie, but I think we won the tie-breaker...I still haven't learned how to keep score---stop laughing!) Anyway, I was not horrid...though I wish I had some hands back...I had LOUSY cards!

The "2hrs at most" game turned into 15 minutes waiting, and 2hrs 15min playing. A few slow players drive some of us crazy, but hey! 80s, just for fun, right? I survived. I made it back home and transferred into my lift chair without calling the aides or being hunched over! My core exercises are paying off! Grand Slam!

Will I Die From MS? Should I get a Flu Shot?

YES! It is not only okay to get a flu shot when you have MS, but it is just silly (and potentially dangerous) not to! Every year this question arises, the fear being that adding something which T-cells might want to attack would cause an MS relapse. This has NEVER been proven. I have NEVER had any relapse or ill effect of any kind after a flu shot. You would have much more potential of your MS acting up if you get the flu! Read about some people getting Guillain-Barre Syndrome from a flu shot and the swine flu of 1976; an event I had not heard of before, click here.

And here is what the National Multiple Sclerosis Society says about the Swine Flu 2009:
"H1N1 (Swine Flu) vaccine: The H1N1 (Swine Flu) vaccine is still in production, so its safety and efficacy have not yet been established. It is anticipated that the vaccine will be available in the fall of 2009, probably in October. When it becomes available, the recommendations for its use in people with MS will likely be the same as the recommendations for the regular flu vaccine. If a live, attenuated version of the H1N1 vaccine is also produced, it should be avoided by individuals with MS. In summary, therefore, people with MS should consult with their physician about obtaining a regular flu shot and a H1N1 (Swine Flu) vaccination as soon as they are available. We will update this Web site when new information is forthcoming. The FluMist nasal spray vaccine and any live, attenuated version of the H1N1 (if one is produced) are not recommended for people with MS.
Flu and swine flu information from the U.S. Department of Health and Human Services is available at www.flu.gov. You can also read information from the Centers for Disease Control (CDC) about the regular flu vaccine and the H1N1 vaccine."



"Will MS kill me?" This question will come up again and again, because, well, I see/hear/read the same stuff you do: obits that say, "Passed away after battling multiple sclerosis for many years," and anecdotal personal stories of,"My mother died from it." And I am sure there are death certificates that state: "Cause of death--MS" Well, if you broke your leg, fell down the stairs and snapped your neck, would we say "broken legs will eventually kill you?" NO



You don't die from MS. You do die with it.

Read about avoiding complications from having MS http://www.nationalmssociety.org/index.aspx

Be well this flu season! Prepare to enjoy the coming holidays! (Yes, I said it.)

ONLY HERE! THE AVIATOR Ink and Pen Dot Art

Is this beautiful or what? My partner took months of meticulous dots to make this. No, she has never had an art class in her life. Yes, she does such art while fighting chronic illnesses.

Art By: Karenlee Kitto