Asleep on the Job at U.S. Postal Service

This has always fascinated me and any thoughts you have are greatly appreciated as I have never heard anyone else speak of this phenomenon.



When I worked at the post office, my job was keying letters to right zip slots while they sped by my eyes. My fellow employees told me they sleep while doing it. (HUH?)

After less than a month I slept through my 4 hour shifts on the machine. My eyes were wide open. I made no errors. I worked the 9PM -- 6 AM shift and was awake all day long. Felt totally rested. I have never understood how this was possible and have never read anything about it.

What do you make of that?

My Philosophy, Mom's Alzheimer's, and Pop Motivational Denial

On Thanksgiving day I called my mom in Ft. Wayne, Indiana. (I live in Seattle.) Lately reaching her by phone has been difficult. Finally, I insisted they find her and I wanted to speak to her. (I know I sound like a kid on the phone, so I have to say in my most authoratative (acting 101) voice, "This is her daughter in Seattle," which seems to make the staff 'jump to'.

Once they "found" her in the lobby; on Thanksgiving day she was in the social room, alone. My brother would have had her over, but Mom never enjoyed "functions." (probably rubbed off on me) She asked why I hadn't called on her room phone. I explained there was no answer; she said she had been right there.

My personal philosophy about "living in the moment," (an often mentioned, by motivational speakers, act of living life to the fullest) is that it is ridiculous, unhealthy, and plain wrong. Many also strongly believe one should, "put the past behind" them, and "never look back."

Living in the moment is not an option, it is a reality. We all live in the moment, unless we are dead, but my definition of the "moment" is this: each moment of our life includes (should include) all that has happened in our past and all that is our future now. Present, past, and future are so closely aligned that they can not be separated. It is "future" that people get hung up on, most seeing it as something far away---it has in fact come and gone before you got to this sentence.

When people reach their golden years (don't know why they are golden as we usually have less money then), they often say, "Life is short." I say, if you live knowing each moment should be (and is if you are healthy) full with the past, present and future, then life can be long and fruitful.

My mother is not healthy; she lives in the present moment only. Her past has gone, her future never exists. It is her reality and she is not the happy person I once knew.

Someone said once that to live in the present is to free yourself, like meditation, one can shut off the "white noise." I find that idea awful and unhealthy. That "noise" is there for a reason---to learn from, to grow stronger emotionally, physically, spiritually, and mentally. The attempts to "tune it out" (what I call denial) is what keeps psychologists in Jaguars, and psychiatrists in yacht clubs and Armani suits.

My mom was always good at tuning out her past pains. She made some deep brain paths early in her life. Now they are the paths of least resistance and soon they will be all that is left.

Knowing that my past is always close and my future never far away gives great meaning to my time on this earth. That is my philosophy.

Tiger Woods and Multiple Sclerosis Crash

Do any of you go there too? First thought I had was: (ala House M.D.) maybe he has MS. Nobody is talking about the crash of our wealthiest superstar athlete, which happened right outside of his house. He will up and about soon, they say. Am I a terrible person? We with MS need a real superman to get MS, so the world will hear our cries for help. I watch the news daily for reports of mega celebs tripping, limping, cancelling show dates for no reason. Ye of chronic illness, do you always have that ear open?

Thanksgiving at a Retirement Home

What is Thanksgiving like in a retirement/assisted living home? To start, everyone was abuzz about it for many days beforehand. Our Senior Administrator ("Charlie" to is all) delivered a typed story of his childhood Thanksgiving memories and his feelings about the importance of gratitude towards well-being. Charlie is around almost every day and is very approachable---just a real nice guy. He has tough decisions to make that will never make everyone happy, but I get the sense he really cares about this place. He calls it his home and so do I.

The Thanksgiving meal was 3 or 4 courses, starting with a wide choice of drinks, a spinach/mixed lettuce with pears, almonds, and cranberries; then came the turkey, so much turkey that Karenlee and I will have some leftovers for days; there was dressing, mashed potatoes with gravy, green beans and delicious warm rolls. Dessert was TWO slices of pie: pumpkin and pecan with whipped cream on both.

We are assigned places to sit and my table is overloaded with more residents sitting there than chairs, but so far we have never all been there at the same time. At lunch, one can sit anywhere, dinner must be seating only where your menu (we always have two complete dinner choices) and name is located. One lady had my spot but was hospitalized and lost it to me. But I usually only go down for lunch, so it works out. We like our table mates very much, but as in all families, sometimes sparks fly.

One lady got a full turkey leg! None of us could eat all the food, so most was wrapped for us to take back to out apts. The oldest at our table has just turned 90 and she eats everything! I don't know how she does it. They all have wonderful stories and one is a former city employee like me who also likes show tunes, so we always have much to talk about. This family-feeling is what I wanted and I couldn't be happier.

As we were leaving a woman who has her autobiography in the home's library (a very good assortment of books there, I might add!) stopped by to give us a copy. I read it straight through when I got home. My own story about an incident at my job, is going to be 2010's priority and I have questions for her. Everything seems to be pushing me towards finishing that story---very exciting.

The day started off a bit rough. A resident asked me, as we were on the way to lunch, if I could get out of my power chair and walk around. I said, no. "No? You can't get out and about? You should exercise. Do you get massage? How do you exercise?"

"I can't use my legs to stand. I have MS, multiple sclerosis. Do you know what that is?"

"No," he replied gruffly.

As I began to explain the nerves (chance to make awareness happen, and why the heck is our NMSS doing such a bad job of this? In the 1960's that woman in the wheelchair on TV ad, "...the most crippling disease of young adults," made for conversations and donations. How often do we get a TV ad now? ) he was off toward the stairway and gone. He certainly wasn't the one who checked out "The Voices of Multiple Sclerosis" book and didn't return it. The missing book I donated has raised a bit of a stir, which I don't understand---isn't the idea that people DO take it out to read? Still some politics here I don't yet get. But, I have another copy to donate.

One resident (I prefer to call them neighbors.) told me that she wasn't sure she could read such a book because it might make her think SHE has MS. I reassured her, well, I told her that the chances of her getting MS now is as likely as her winning the lottery. I do realise it is not an easy read; it IS about sick people. But it is meant to be inspirational, we all will be sick one day.

A few hours after returning from the grand feast, our box dinners were delivered. I am guessing this was to allow the staff an early ending shift. (We all gave them a round of applause for a job well done. Arranging such a feast was no simple task.)

Then it was time to make phone calls to Mom, my brother and his wife (her twin sister has MS and I will send her a copy of the "Voices of..." book.), friends in Seattle. It was a nice Seattle day. The sun was shining. My first Thanksgiving in my new home was a welcome relief from the previous few years of frustration and loneliness.

Retirement homes are not what they were in my youth. They are clean, healthy, and safe. I'm sure some rotten ones still exist, but know this: THE BABY BOOMERS ARE COMING and we won't settle for nasty homes for our parents or ourselves.


In Seattle? WHY NOT!? The best retirement home you'll find: The Viewpointe on Queen Anne
Give Charlie a call for a tour and meal. http://www.theviewpointe.com/about.html

Dachshunds, Much Like Great Danes, Ja?

Wibby and Betty were madly in love. They couldn't have children, they had Dachshunds.

I've been telling that for many years and it ALWAYS cracks me up. "Wibby" must have come from Wilbur. He was Aunt Vi's longtime companion--Ivah's brother. They bought a flat in a new addition in the suburbs; very new way to live back then, very modern. I went for the puppies!

This photo is a tribute to the passing of Sassy, the Dachshund friend of a friend of mine.
Seriously, don't they kind of look like Great Dane puppies?

(I was about 5 in photo)

Thanksgiving. Big Deal. Hard Work for Women

The day before Thanksgiving---I remember them well. Aunt Vi starts her cooking preparations. Ivah and Lane (Ivah's mother) will join in. They will get dishes ready, set up folding tables and chairs in almost every room in their house. They lived in the large upstairs apt., of their 2-story house (Lane's room was off-limits; after she had moved to a nursing home I took a peek at the inside of her bare closet and was shocked to find the walls wallpapered in a rock 'n roll motif.)

Meal ingredients would be placed, ready for action. I hated the whole affair. The steam. the sweat, the dirty dishes, the hard work that all the ladies were doing---for one day of feasting, while others were starving. You heard that a lot, "Eat your food. Children are starving." There would be no empty bellies at Aunt Vi's. Once upon a time men actually had to do work on this day, like hunting a turkey. Now...hahahahaha "Hand me the remote."

There would be so much food, it was ridiculous. Everything handmade from the noodles to the whipped cream. Every dish would be delicious too. Relatives would come from across the country for tomorrow, friends, tenants; Aunt Vi had many friends. I enjoyed eating the food, playing with my cousins, but any meaning besides eating took second place if it even had a place.

Lane always prayed before meals, always. But the rest of us mostly ate. I don't recall football games, just card games before, after, and during.

So, it was only in later years that I would find a way to give meaning to tomorrow. Food would not be involved at all in that meaning. (Though this year the retirement home is having some affair.) Learning how we slaughtered the Native Americans and drove the living to reservations doesn't get me excited about the day either. Parades leave me bored. I just don't get parades. Where is the meaning? Santa at the end seems to be the reason for the event and giant balloons?
Balloons stopped getting me excited around age 4.

Tomorrow is a day for kids. Adults will put on a show for them. Adults will enjoy a long work-vacation. Men will be fed, and treated to ball games all day and into the night.

Some will seek meaning, volunteer to feed those less fortunate, celebrate being vegan and mourn for all the dead turkeys. I will be with dogs and cats, smelling the food and wondering, "What has gotten into those people?!"

ELISABETH HASSELBECK AFRAID OF NYC?

Elisabeth Hasselbeck wants to cut and run (sounds like her idol Sarah Palin?) from New York city, because of her fears that the city will open itself up to a terrorist attack by putting Khalid Sheilk Mohammed on trial there. Joy Behar revealed Elisabeth's plan on The View today, much to the anger of Elisabeth, "That was a private conversation."

For all Hasselebeck's bravado about leaving Iraq too soon---the terrorists will win and so on, she seems more than ready to pack up for a city she deems safe. Another Republican mouth piece shows their true colors: When the going gets tough---get out and hide!

Publisher's Weekly Review:Voices of MS

Happy Thanksgiving Dear Readers!!!!

Voices of Multiple Sclerosis has received another great review, this time from Publisher’s Weekly, the review follows.

"Voices of Multiple Sclerosis: The Healing Companion: Stories for Courage, Comfort and Strength Edited by Richard Day Gore and Juliann Garey. LaChance (IPG, dist.), $16.95 paper (275p) ISBN 9781934184080

After facing breast cancer, Debra LaChance founded The Healing Project and initiated her seven-part Voices Of series (Voices of Breast Cancer, Voices of Alzheimer’s, etc.) to fulfill the need—her own included—for “personal stories of those who had gone through this ordeal.” The latest begins with an overview of multiple sclerosis by medical doctor John Richert, followed by 34 diverse voices of patients, as well as their spouses and children. California academic Jodene Kersten writes about her mother, born in a Japanese-American relocation camp during WWII and diagnosed with MS when she was 18, but who raised two children and pursued a career as a nurse. Gerald Chalmers writes about the physical and emotional obstacles, admitting that he refused a wheelchair for years because “it screamed ‘disability,’” only to find it radically improved his life. Addressing all aspects of life with disease—diagnosis, diet, exercise, laughter, stigma, support, family and friends, acceptance, treatment, and the promise of new and better treatment—this is an honest collection that will provide great context and practical advice for patients and their loved ones."

Learn to Heal with Laughter

From Dr. Terry L Wahls, " ...because learning how to laugh is extraordinarily healing. That is the moment where we control our destiny, and our lives."

Read her story and those of others with MS in "The Voices of..." series available now at book sellers everywhere.

Exclusive Interview with Dr. Terry L Wahls, a Doctor with MS

The Voices of Multiple Sclerosis is truly a wonderful book for anyone with MS or anyone who knows someone with MS. I have already purchased copies for my friends with MS.

It is hard to choose just one author to interview, but I have learned so much from Dr. Terry L. Wahls, M.D. and her story, "Telling the World." My own person goal of walking again with secondary progressive MS is coming along slowly, which is fine, but something was missing and I knew it. My answer may just be in Dr. Wahls' own goal of reversing her MS progression.

My question was simple: "Do you feel you are a better doctor now that you have MS? In what ways?"

Dr. Wahls: "I have become a much better physician. 1. in medical school, memorizing mountains of facts - they have no meaning until we have our patients' stories. Then we can begin to convert the facts into long term memory that is retrievable and then understandable. Having the illness experience has given me much more profound insights into the experience of a chronic progressive disease, and what it takes from the individual and their family to survive. I also understand why people take and then discontinue medications/ treatments. I acknowledge that when I take care of patients - and have a more balanced conversation about what they are doing and want to be doing with their treatments.

I also understand that function may be more important than life. Finally, now that I have seen the results of intensive, directed nutrition at restoring my health, I have changed my practice so that I emphasize understanding what people are eating, teaching them that our bodies require building blocks to do the chemistry of life. If we don't eat those building blocks, the chemistry of life does not happen properly and we begin to become ill.

Through the intensive focused nutrition I went from being wheelchair dependent, walking very short distances with two canes, to being able to walk through out the hospital, biking 5 miles to work each day and again doing trail rides by horse. (2 years). I see excellent results in my patients with traumatic brain injury and in my primary care clinics. \My future - I am planning a prospective study which will test my interventions in others with MS and advanced parkinson's disease. We are testing these interventions in the traumatic brain injury clinics. I am finishing a book which details my descent into profound disability and my remarkable assent back to the walking world. I teach food as medicine to the public and to the health professionals in the community."

Along with her inspiring personal story in "The Voices of Multiple Sclerosis," I also found her blog fascinating and very educational. "Up from the Chair - Defeating MS" http://terrywahls.blogspot.com/

The Voices of Multiple Sclerosis is available at retail book sellers, on line, (click on side bar), and many libraries. Ask your library to carry it. 100% net proceeds go to The Healing Project.

For more info on Dr. Wahls visit her website http://www.terrywahls.com/

Too Butch for Lifetime

Blogs that make me stop and think are super fun for me. I like comments that make me think too. Not that I go brainless into other blogs, just some are deep. Some I never have left a comment on, my favorites list is long and there isn't enough time in a day, but I THINK about them: "Oh, I must get back to that blog" or " I think I promised to do something on/for that blog" or "Where did that one comment go I wanted to respond to?"

What is it with Blogger---I can't always tell what post the released comment goes on! Drives me nuts. One blogger said (typed? keyed? Do we now "punch" a phone number not "dial?") OH HECK, I lost my train of thought, must have slipped into one of my black holes.

Anyway, one guy was talking about Satan, was there a Satan, the old IS THERE A GOD question that made a stir on TIME's cover some years back. I have lost track of time. Anew resident in my assisted living home got mad at me when I mentioned she was "new."

'NO! I've been here 2 months!" (O-Ka-eeee, but you still can't find your way to your apt. from the dining room.) This complex really is a maze. But the views are fantastic. Retirement homes now are built so small. Just like new condos---a shoebox. My old work cubicle was bigger than they are. The people here are like my old co-workers, who were like my school mates---I am of the belief that humans don't change at their core after about 5 years old. I also believe there are only about 6-12 different core types. No Harvard degree here, so what I think doesn't matter. I still think about finishing my degree, but tick tock tick tock, probably won't happen.

Some "experts" think MS may be a vascular problem. All I know is mine started after my head hit the cement curb at age 10. No MRIs back in '67.

All these health debates---ugh, comes down to what the majority of us in the states hate: Dems VS Repubs, Helping the poor VS Guarding the rich, Oh, I know there are many rich Democrats but they are in the minority. I don't know. There are so many trailer living, gun toting, Republicans....I don't know. Sarah Palin, her Newsweek cover, what's the big deal? I don't find her the least bit sexy. But it IS a stupid cover. We say we want a country that is not sexist or racist, but we keep bringing it up. Yuck.

Tonight I am going to watch a Lifetime movie, so SUE ME! I love romances. There, I said it. I am the only one in my "family" (that includes my partner of 30yrs and moi) that watches. Our Netflix que is "Romance"---so embarrassing. I'M THE BUTCH. What can I say? That is why gay people (females) don't like me. I've never had a lesbian friend. I'm not butch enough. (I'm "saying" that in a real bitchy voice) Yuck. It stars Ashton Kutcher and Michelle Phifer. I think that spelling is wrong. She is hot at any age. Him? Whatever. When you watch a show do you put yourself in one of the bodies of the players? I always put myself in the man. I'll pretend Ashton is Brad Pitt from Thelma and Louise. I can't stand Tom Cruise. He had to lie and say his braces were to fix his bite. Bull! He had a fang tooth and he straightened it. Why lie? Who cares? ALL of Brad's teeth are fake. I read that years ago. Ahh, see my brain took me back to the blogger---he said the sexy Latino woman on the new TV comedy "Modern Family" is from Columbia and is really blond with blue eyes, but she couldn't get an acting job like that so she changed her coloring. That is definetly racist. I am attracted to blondes with blue eyes. I wonder why? My blonde school chum was attracted to dark features. She said it is what we don't have. Hmmm. I dated a black guy once, found out he was married. I dated a white guy with brown hair/eyes, found out he was married. I dated a blond guy once, found out he was a nimnul.
The first blond I knew, I cornered and kissed---Aunt Vi's friend's nephew, Stevie. I was 4. He is still in prison for murder, I think. No, none of them "turned" me. Every gay person tries to fit in, well, in the olden days. My God, I'm from the olden days. Aunt Vi agrees that people are, at their core, who they were at 5. We are two peas in a pod.

Time to unmute and watch the TV movie. I suppose I'll cry. GAWD. Good thing I'm in a woman's body. Nobody questions. Partner will pass by and tease me. "Need a tissue?" "SHUT UP!"

Must be easy being straight, unless you are a man who loves Lifetime movies. I heard there's a club for them. I wouldn't be allowed. Misfit. Deaf mute, kid, dead dad, gAWD I'm tearing up already.

I don't even like Brad Pitt that much. (I mean his looks.) I loved "Harold and Maude," now that was a movie.

MS Myelin Repair.Needs Collaboration

My experiences with "National" and "organized" multi-corporations that form fund-raising societies and associations to help people with multiple sclerosis, has been unpleasant and discouraging to say the least. I would love to see how they register, track, and resolve complaints. That is important for any organization so indebted to fund-raising. We donate money, we walk in "athons" but who is helped and how exactly?

A poetry contest led me to a blog I had been following about The Myelin Repair Project. No, actually, I started the other way around. Myelin repair is what I need now. I do not need modifying drugs---I am secondary progressive. I no longer relapse. I need to be repaired like Humpty Dumpty. All the King's horses and men have thrown in the saddle. I need research and a new drug discovery. Big PHARMA is in it for the money. My problem is nothing more than a new yacht to them. Find a trillion dollar cure, get it patented, seal the deal, sell and package, scratch the FDAs back and blue water here we come.

Despite $40 billion each year received by academic research, they are not producing clinically relevant scientific discoveries. Despite FIFTY BILLION yearly in biopharma R&D expenditures, the number of new drugs approved has remained flat.

We MUST act differently, the old way is not working. My age-clock is ticking and I want to dance at my wedding. (So, I need this within the next 20 years, give or take a revolution.)
Click here to read all about the accelerated research collaboration that the Myelin Repair Foundation has created. By bringing together researchers, biotech firms, drug manufacturers, and patients to an apex of destination, our mutual goals can be reached.

Thank you MRF for my poetry prize T-shirt. It is the coolest tee I have. Great marketing, cool design, it will bring awareness to our goals!

MS Needs a Foundation that is World Class

Well, the wonderful National Multiple Sclerosis Society swiftly denied posting anything about the Voices of MS book. My local loser chapter has not (I don't think they ever have) answered my email. I swear, am I asking for money? No. A grant? No. I am OFFERING, their reply? "Don't care." Once again. Just amazing. No wonder we have gone decades without a cure, a cause, or sound evidence proven-long term medicine to stop MS. The Michael J Fox Foundation just started and is making huge strides. The Christopher Reeves Foundation continues strong. WE can't even stick with a color! WE advertise using fear tactics,"Is it the water?"

This weekend I will introduce a foundation that is doing it right.

Task Force without Force. That is How USA Rolls

In regards to the "Task Force" that gave its findings to our government, showing that in most cases a mammogram for women is not necessary until after age 49 ---I just have one thing to say. During my 18 years with the city of Seattle I was on several "Task Forces" and our recommendations were never carried out. In fact, it became obvious that we were formed only to say we were formed. People in power had already made their decisions.

Denzel Washington Sexiest Man Alive

Denzel Washington will be headed back to Broadway to star in August Wilson's play, Fences. I hope this leads to a movie starring Denzel. Fences is the story of a former baseball player now working as a garbage collector. At age 54, Washington is still one of the sexiest men alive!

MS Sales Pitch with Flu Shot

Yesterday was flu shot day at my assisted living home. The small room was packed. I have made many friends here already. There are still many residents I don't know. It is exciting to think that each time I wander out, I may make a new friend. (Remembering all the names is another story--HA!)

My wait wasn't long and I kidded the nurse right away by acting scared of needles. She became upset, saying it was all she had. I laughed, told her I was very used to needles, that I have MS and my medicine comes via the point. She then asked what medicine I took; I said, "Copaxone," and she nodded her head knowingly.

As she gave me the shot, she told me that her good friend had just been diagnosed with MS. "And she's a nurse!" she said, as though that had significance...

"Well, listen, tell her to get a new book about MS called, Voices of Multiple Sclerosis, it is very inspirational and informative. (My goodness! I had become Babara Walters---pushing Audition. Yuck.) I would have given her the book for her friend, but I left my extra at home. Lesson learned, and I forgot to even give her my business card!

After I retired and started my blog, I had business cards made with my blog address on them. Usually, I keep a few with me, but who expected such an opportunity at a flu shot clinic? When I worked for the city of Seattle, staffing phones, almost weekly I would get a call from a person with MS! My co-workers didn't get such calls---serendipity. I learned a lot about Seattle doctors thanks to those callers!

MS is all around us. Was there a time when it wasn't? Or do I just notice it now? Hmmmm

It's a BIRD! It's a BRAIN TUMOR! It's MS!

Where was my mind after I was told I had MS? The MD who spoke too soon, the neurologist who sent me straight away to get evoked response potentials (testing how well my nerves--the eye, an extension of our brain, reacted to stimulus) and the MRI was done the next day.

Then I had to wait a week, a loooong week. I guess, what I'm saying is---there wasn't much time for thinking about it. Since I was pretty convinced it was a brain tumor, all the strange body happenings over the years....I started remembering them. Not being able to run a block, legs so heavy, yet I wasn't out of breath or even sweating; a strange numbness that would come and go, not like when your foot falls asleep---deep and unshakable; a foot that wouldn't pick up so that I had to swing it up with my hip; a feeling of crinkled paper in my shoe, so disturbing that I sat on a dirty downtown sidewalk in Seattle and ripped off my shoe, sock, to find nothing there; the earth that would move up and down on my way walking to work, yet nobody seemed to notice but me; and those little bright lights in my eyes that started soon after my pick-up VS 10yr olds bike collision in 1967; all coming and leaving through the last 23 years, experiences that were just annoying. Now all coming together in one week, thumbs up or down, most of my thoughts were about my partner.

Her health had always been our crisis, from the day we met. Over the years she had been to ERs in every city we lived in. Usually we were sent home knowing nothing more than we had entered with. She was passing out in buses, having seizures at home, sleeping less and less to the point of suicide. And we couldn't get any medical help. It was a horrible, horrible time.
And now me? She needed me. My mind was planning how to protect her. Her older sister who encouraged us to move to Seattle "family" (right) was unreliable, in fact she never showed up at one ER, I was always alone with Karenlee. Who would be by her side if I were gone? I spent the week worrying about her. There was no Internet or home computers I could race to and the local library had NO books on MS. I had Issac Asimov's The Brain (I was a Psych major in college and the brain was always of great interest to me.) and his few words about MS were something along the line of, "...death 5 years after diagnosis..." I drove to the University of Washington bookstore and ordered a book about MS. (Yes, that was in the olden days.) But, not knowing what was actually wrong with me...no big rush.

Considering I might have just 5 years, I wanted to find a home for Karenlee, a condo so she would have people around. It would have to be near stores and a bus to her job at the university. Ballard was a neighborhood in Seattle that was like a small town. It was safe, clean, and full of old people. (Many jokes had Ballard as the punch line. Many Scandinavians moved to Seattle and made Ballard their own. They built sturdy houses, planted small trees, and grew old there---generation upon generation. It was delightful.) The well-respected hospital was within walking distance from a new condo complex being built directly across from a large grocery, bus stop, and library. Bingo!

In other words, my mind was on doing/planning/the future for my loved one. I was never scared. I wasn't afraid of dying. I didn't do any praying. I did take a few days vacation to get things in order. You know, I must say, not once, not in any city we have lived in across the U.S. (always above the Mason-Dixon) did the gay thing get in the way of any visiting or decision making in regards to doctors or hospitals. Usually, doctors and nurses seemed happy to have someone there to tell them what to do. Even after we got joint POA (power of attorney) and made mini copies for our wallets, no one ever wanted to see them. This is one of the reasons I love Seattle.

The MRI was a trip! But I didn't know any better. It was a traveling, gypsy trailer with the machine inside. I refused the sedative. I learned how long it would last and sang Michael's Jackson's "Billy Jean" to measure the passing of time. (Worked perfectly!) Then I started an innocent, "I'm a hick from Indiana" conversation and "Oh, that is MY brain? Wow, can I see?" so that I could look for those white plaques the neurologist said would mean MS. And wow.

Right in the middle of my head was a hand sized BLACK thing. A tumor, and big.

Softening the blow, I left out what I'd seen during the retelling of the day's MRI to my partner. The remaining days until I heard from the neuro, would be spent reassuring Karenlee that life goes on and she will be okay whatever happens. We visited a cemetery and discussed how we would be buried after cremation; we sat on a stone bench there and spoke of the beauty around us.

The next week my neuro would explain that the images were reversed and the black spot was actually a white plaque. (DUH, and I used to play in a darkroom.) I had MS.

Someone commented on my blog that they wanted to know how I felt after the DX. Well, this is how I felt after the first quasi-DX in my MDs office.

No Mammograms Needed Until Fifty, No Self Exams

No mammograms needed until age 50 and self exams are out the door. An "influential" federal panel has spoken. Let the money cutting costs of our new health care reform scared-insurance companies begin! And self exams? Whatever, whenever, seems not that big of a deal. Hot off the press, ladies.

"You Have MS" and the Tricky Knee

During one of my last games of basketball with some co-workers, I messed up my knee. You know how it goes, after 30 the sports games without plenty of warm-ups make your body yell, "Hey! You're not 20 anymore and I'll prove it!" So, as is natural, I continued playing with the "trick" knee until it started acting up during every day activities, like taking out the garbage.

By the time I was sitting in my doctor's office, wondering what pill might help me carry on, the knee seemed fine and I was certain that since I was a female, my nice doctor would brush me off with, "Take aspirin and stretch before you play basketball."

The first thing he did was tap my knee with that miniature hammer and my entire leg swung up, missing a direct knock-out by less than half an inch. I laughed, but noticed his facial expression had changed into a solemn face holding up deep folds in his forehead. Then he started asking the weirdest questions.

"Have you experienced any numbness on your body?" (Funny he should mention that.)
"Funny you should mention that. I do occasionally have, like, numbness, but it goes away."
He is now looking in my eyes with that little bright light. (KNEE, Doc, KNEE) "Any vision problems?" (What?)
"Like what?"
"Any stars" (Oh, my God! How did he know? I HAD seen star-like thingies over the years.)
"Well, I have before. Why?"
He took off my shoes, held my foot in his hand and the foot started shaking up and down! (Wow, I thought. What manner of magic is this?)
"Wow," I said, "look at that."
He looked up at me, "This is not a normal exam." (Oh, crap. Here it comes---I need knee surgery.)
"Oh?"
"You have MS."
( ...........)
"I'll send you across the street to see a neurologist. I can get you right in," he said as he was walking out of the exam room toward his private office. I put my shoes on and followed him.
"But...what about my knee?"
"You have bigger things to worry about than your knee. Dr. Schmidt, it's Joel, I have a patient I think you should see right now. Can I send her over? Okay, great..."

And that was how I was told I had MS. Looking back, it was wrong of that primary care doctor to just up and declare such a diagnosis without more testing---it verges on the edge of ridiculous; but he called it right. I saw the neurologist that day, within an hour I went from wanting to get a trick knee looked at to being told I could have anything from multiple sclerosis to a brain tumor or, "It could be many different things." (None of which involved the knee.) A week later an MRI would confirm what the evoked response test agreed with.)

Here is what bugs me. That knee always "clicked out" on me and still does, so much so that now I believe it is part of the reason I can't walk or stand. And no matter how many times I mention it, even to a "knee specialist," it is simply and swiftly blamed on MS. Can't I get a damn X-ray at least??! Once you wear the MS badge, doctors who know little about it will feel free to blame every other problem you have on MS. Arguing your side only gets you written down as, "argumentative" "hostile" "denial" and so on.

Once again, as I do every year for the last 20 years, I will write: "Get knee checked out." And out there somewhere is a doctor who will hear me out and take up the cause. Somewhere.

"

Farrah Fawcett Includes a Secret Lover in Will, but Not Ryan.

Wills are our last chance to get real, tell it like it is, and slap the people who treated us like %^&*. I love that about wills. Someone who opened a car door for you just once over 50 years ago might get half your money. Your lover of 20 years, holding your hand at your dying bedside may get nothing, and the love of your life may become rich, both financially and by way of validation. What can't be spoken or acted upon in life, well, there is always that final will. I say YEAH! (There will be surprises in mine, that is for sure.)

Reporters are making Us Crazy. Use Your Freedom Wisely.

Lately it seems that the news is horrible. "Little girl taken from her bed." "Boy trapped in balloon." "Psychiatrist soldier shoots 30 other soldiers." "Wife Fakes Kidnapping." You have heard them, " Drunken Mother and 4 children killed," "Boy set on fire my classmates," "Korean missiles aimed at Hawaii," never ending---and you start to look at your neighbors differently. You start to think, "If it could happen to them..."

Then, in the days that follow, reporters start to do their JOB and investigate the story, collect facts, but by then the damage to our collective psyche has been done. If we stay with the story, which we don't want to do, we find out these people were mentally ill or the police had a file on them or family disputes had been ongoing, a love triangle existed---9 times out of ten SOMETHING precluded the extreme event and that something is the kind of something that doesn't even touch the majority of our citizens.

By the time the facts come out, we have moved on to believing the world is "getting worse by the day." Oh, I don't know, are your 5 year olds taught how to run to bomb shelters like I was in 1962? Have any presidents been gunned down in the last 40 years? Is there a draft? There will always be crazy situations out there, but for most of us---they will always be out there. The world is as crazy as it has always been. (And maybe even less so. Most of us DO learn from past mistakes. Most of us DO try to live good lives.)

This post is not about the state of our minds and actions , it is about the hideous state of our news delivery. I'm talking about serious news reporting. We will always want it faster, but reporters must use technology to get the who what when where how and WHY to us at the same time. Right now the what is all that editors seem to demand. All freedoms come with responsibility and a dose of respect for those your freedom will affect is called for. Freedom of the press is a cherished freedom that our founding fathers deemed worthy of being the first amendment to our constitution. As we evolve, so must our dedication to the intent of our freedoms.

Lou Dobbs, Don't Let the Door Hit You on the Way Out

Lou Dobbs has quit or retired or in some way left his job with CNN. Maybe CNN will try to get back to reporting the news and not jumping on GOP bandwagons. Dobbs acted like only he knew the truth on any topic. Bye-bye.

Senior Moment for Bruce Springsteen

The Boss, Bruce Springsteen, had a "senior moment" on Friday the 13th, when he shouted out, "Hello Ohio!" and continued to address "Ohio" while he was in Michigan. Bruce is 60.

Now, I, find it ridiculous that we have including "senior moment" into our already disheveled vocabulary. You forgot where you put your hat when you were under 10 years old and at 17 you forgot the capitol of Nebraska on that pop quiz, even though you remembered a minute after you turned your paper; and who among us hasn't forgotten where the hell we were , what day it was, mother's birthday, an anniversary? But if one is over 50, these normal transgressions become: a senior moment.

Hey! He is a rock star, most rock stars don't know what city they are in or even how they got there! May The Boss rock that hard rock body into his 90s!

FYI: Lincoln

Friends in Striped Pajamas

I just finished watching The Boy in the Striped Pajamas. I couldn't stop crying. What a wonderful movie and now I must read the book. It moved me on so many issues, but the simple friendship between the 8 year old boys was so powerful. I grew up in a neighborhood without kids my own age to be friends with, but I was always reaching out. Most of my friends were outcasts and misfits. One grew up to tell me that I needed to be around broken people. (She used different words.) I disagree. I think that because no one wanted to be friends with me, I had to seek out the outsiders.

Now, looking in the rearview mirror (though I hoped it would be the case), my friends were the best. They made me a better person.

Today is "Make a Friend Sunday." I declare it so. Keep in mind who the best friends are. Off I go...

"Friendship is unnecessary, like philosophy, like art... It has no survival value; rather is one of those things that give value to survival." - C. S. Lewis

Myelin Repair Poem, Blog, and Foundation

Ever have a song stuck in your head? I did yesterday, just as I saw a "poem contest" about myelin repair. Well, I am NO poet, but this song wrote the poem and I WON the contest!

Later, I found out it was Sweet Caroline, and had I know the lyrics, I might have actually written a better poem! Now, hearing it on YouTube, sung by an artist I have NEVER much cared for, I kind of see where my mixed up brain was going...at least I got the song out of my head!

All for a good cause: The Myelin Repair Foundation http://www.myelinrepair.org/
(Check out their Blog listed on my side bar "MS Blogs I Love.")


"Diane Standiford from the blog A Stellarlife! Her winning myelin poem is:

Myelin, sweet Myelin
Can’t you feel my impulse comin’?
My nerves are cold without you
Myelin, my leg won’t lift without you
Please come back and wrap around
Oh, how I miss you, Myelin

Diane was Dx’ed with MS in 1990, and now had secondary progressive MS and needs myelin repair more than DMD drugs.
Her blog, A Stellarlife, is about living a life with multiple sclerosis and all the rest. She includes her views on current events, disability issues, entertainment and silliness, politics, health issues; but the celebration of diversity is Diane’s main goal. She just had a story about living with MS published in “Voices of Multiple Sclerosis,” available at Amazon.com and from LaChance publishing.
Thank you Diane for sharing your voice and creativity with us."

Neil Diamond Stuck in my Head

Facebook Alibi, Honey, I was on Facebook REALLY

Could Twitter or Facebook provide the alibi you need? Hmmmm

"New York (CNN) -- For 19-year-old Rodney Bradford, a simple Facebook status update turned into much more: a rock-solid alibi after he was accused of a crime.
Confirmation of the time stamp on the update and the location from which it was entered showed he could not have been at the scene of a robbery in another part of New York City. After he had spent almost two weeks in jail, the case against him was dismissed."

Jump for Strong Bones

The latest research says jumping up/down just 20x/day can improve bone density. (Better than weight lifting, running, or any extended exercise.) A signal is sent to your brain to build bone, when that message is jolted out.

Cool, huh? I love finding easy ways to jump start our brains.

If you haven't had a bone scan, ask your doctor if you need one. I used to get one once a year when I took monthly steroids for my MS. Sometimes they are offered free at health fairs and it is simply tested at your ankle. Women over 50 are at higher risk for low bone density, and it doesn't hurt to get tested.

Since I can't stand, I have my aide lift and drop my legs up and down.

Dogs as Healers

http://lpbooks.myshopify.com/ (To order)

Good Dogs Doing Good: Lives Transformed by Man's Best Friend
"Since a dog first walked out of the wilderness and wagged its tail at a human or curled up next to a stranger on a cold night, dogs have been transforming the lives of those they touch. Good Dogs Doing Good is an inspiring, heartwarming collection of true stories written by people from all walks of life and from around the world, that pays moving homage to dogs that have given hope to those with none, helped teach valuable lessons both large and small about the human condition, and allowed others to gain new perspectives on their own lives and the lives of others. From the largest breeds to the tiniest pups, the canine stars of these endearing stories amply demonstrate how the humble dog continues to earn its nickname “man’s best friend.” With a comprehensive Resources section full of information on service dog organizations."

A wonderful read for anyone who knows the healing power of dogs. Available at retail book sellers and on line.

News Agency Barred from "Public Hearing" with FDA and BIG PHARMA

MSNBC BARRED from Big PHARMA/Media/FDA/SOCIAL MEDIA---meeting. WHY?? What was the fear? Where is the transparency our president Obama promotes? (Update: MSNBC was allowed in after much confusion...stay posted.)

Rats in Seattle Toilets

Once or twice a year I would get at call at work from a citizen who told me in distress, "I have a rat in my toilet!" Although I worked for the public utilities, which includes sewers, I was a bit distressed myself! A rat in my toilet? Just the thought of the possible ways it might encounter me was enough to make me think, "Ick!"

Rats certainly conjure up bad images, I suppose from the 14th century little disaster they perpetuated called "The Black Death," that deadly plague. But they are not bears or snakes or lions, and usually are just looking for a meal. We share the earth with millions of them.

You have a better chance at a slot machine in Vegas paying you airfare home, than finding a rat in your toilet. IF you ever do, just put some dish detergent in the space between the seat, keep the lid closed and flush. Ben, er, the rat, will be unable to climb back up the slippery bowl and return to the sewer from whence he/she cometh, probably never to return. (Even animals like the path of least resistance.)

"Ben, the two of us need look no more. We both found what we were looking for. With a friend to call my own, I'll never be alone. And you my friend will see you've got a friend in me(You've got a friend in me) Ben, you're always running here and there(Here and there) You feel you're not wanted anywhere(Anywhere) If you ever look behind and don't like what you find there's something you should know,you've got a place to go.(You've got a place to go) I used to say "I" and "me"Now it's "us", now it's "we"I used to say "I" and "me"Now it's "us", now it's "we.

"Ben, most people would turn you away. I don't listen to a word they say. They don't see you as I do, I wish they would try to; I'm sure they'd think again if they had a friend like Ben (A friend) Like Ben(Like Ben) Like Ben

In Seattle call 206-296-4765 for rat reporting.

Seattle Writer in Voices of Multiple Sclerosis

The “Voices of” Book Series
With contributors including renowned actors Kate Mulgrew, Terri Garr, S. Epatha Merkerson, Olympic Gold Medalist Peggy Fleming, United States Cabinet member Joseph Califano, Jr. and an international cast of extraordinary, ordinary people from all walks of life along with Seattle writer Diane J Standiford, the Voices Of Series delivers inspiration, courage, and vital information to those facing life-threatening or chronic illness.

100% of the profits from the sale of the Voices Of book series are donated to The Healing Project, a non-profit organization dedicated to providing information and support to those challenged by Alzheimer’s disease, autism, breast cancer, alcoholism and other illnesses.

The current release is "The Voices of Multiple Sclerosis." This is an inspiration book that would make a wonderful gift for anyone dealing with MS. I purchased one for the woman who is bedridden with MS in my retirement home. She enjoys being read to and this will make the perfect holiday gift.

MS Blogger, Joan from A Short in the Cord, and I have stories in this MS edition. I hope you will enjoy all the beautiful stories written by people who know the struggles MS brings.

Avaialable at online book sellers (see my side bar for Amazon.com sale price) and many retailers.

Huntington's Disease Blogs Searching for Life

http://survivinghuntingtons.blogspot.com/


"Angela F
I found about huntington's being in my family over ten years ago, and am currently watching my mum's progression. I am hoping to use the blog to explore the situation, and explore how her illness and her subsequent behaviour can be handled so that it doesn't destroy me or the other relationships in my family. I know now that I too carry the gene for Huntington's. I am not symptomatic. So this blog will also record my fight against the disease, my hopes and fears, and our hopes to start our own family free from this delibitating illness. I hope that my story will help other people to overcome their struggles, and that it will help me and my family in the future to remember what we are fighting for. &nbsp angela_octopus@yahoo.co.uk "

http://heatherdugdale.angelfire.com/

From Heather Dugdale's Blog:

"My family is looking into Stem Cells in China. They have treated an HD person, with HD. I have been following this Clinic, for 2 years now. They hve tested and made their Stem Cells to work.
Choosing to undergo adult stem cell therapy or deciding the time is right for your child or loved one to receive it is a huge decision. While umbilical cord blood stem cells and autologous bone marrow cells are by no means rare in this world gaining access to them is fraught with challenges. But access isn't a challenge in China. Safety tests for your own bone marrow have long shown infusions to be safe and umbilical cord and cord blood stem cells have been safely received by six thousand patients in China now. That represents well over 20,000 transplantation events and opportunities for safety data to present a problem. It simply hasn't."

Huntington's Disease Info:
http://www.mayoclinic.com/

Post Traumatic Stress Syndrome---Listen

During my city job, I often made payment arrangements with citizens whose electric bills were past due. The group I hired in with had not signed up for this; we were customer service good guys: report a burned out street light, report a power outage, set up an account, arrange for appliance repair and the like. When we were suddenly told we would also handle late bills and turn off notices, it didn't go over well and many customers were just shoved off to the mean credit dept.



My dread of dealing with poor people without electricity almost made me quit the job. But, I needed that income and instead of quitting I began looking at the duty in a different way. I would be helping people get their bills in order and refer them to aid agencies. That change of outlook would also change my life, as I connected with many low-income, disabled, and elderly people.



A blogger was discussing his PTSD one day, that is post traumatic stress disorder, and many who serve in wars suffer from this insidious affliction. It had no name in our nation's early wars and vets just lived and died with it. Now, we name it, legitimize it, and even realize many people from housewives to children can suffer from it.



Reading the blogger's post made me remember a caller who was transferred to me in an attempt by another rep. to brush him off. As I took the call, he was mid-stream in loud, agitated conversation---How dare we shut off his lights? What was he to do? I heard that clearly, but he was rambling so fast it was hard to make out his problem. On my computer, his account was $15.35 and we would not disconnect for such a small amount. I saw that only a reminder notice had been mailed to him, and he had just paid $10 cash in person at our main office.



Every time I tried to interrupt to explain his account status or ask a question, (did he need appliance repair?) he spoke louder over me, so I decided to see how long he would/could go on this way. After about 30 minutes, I opened a magazine and kicked back. Then he said, "Are you listening to me?!"



"Yes, but you are talking so fast and loud I can't understand how I can help you or..." Off he went again and I kicked back, opened my water bottle, this time it was only about 10 minutes of ranting. Finally, there was a deafening silence that shot me to an upright position.



"I'm sorry," he said in a slow, deep voice, " It's not your fault. Do you know what PTS is, Miss?"

Silence---it was my turn to talk! "Yes, I do."



"Well, that's what they say I have. But nobody ever listens to me. Are you listening to me, Miss?"



"Yes, Sir, I am." (It was clear that "Sir" was in order and I would continue to address male callers as "Sir" from then on. When you feel broken, a little respect can wash away the shame, embarrassment, and low feeling that you are begging for help. )



This customer and I would continue to have a civil conversation until I had to explain that I really had to hang up and answer other callers. When we were done, he understood that the notices were generated automatically, but he was doing fine and he could call us anytime he needed more time to pay his bill. (He refused offers of assistance from agencies; he was a proud man who fought in Vietnam and felt his country had broken its promise of a life filled with opportunities after his duty ended early due to having a leg blown off. Now he lived alone in a low-income housing project in the worst side of town.)



He asked if he could speak to me every time he called. I said yes, as I always did (few called back) and he called me back about 3 more times, never with any real billing problem, just to talk. And he spoke each time like a regular guy, no shouting, no rambling.



These were the customers I worked for. They are why I kept that job. They are what gave that job purpose.



The recent killings of servicemen and women by their own troops is so disheartening to me. If only they had someone to listen to their fears and anger at having a broken promise. If only our country would not break its promise.
http://welcomebackveterans.org/

Jesus and Our Health Care Polls

Why am I never polled? I think the calls I get are always sales calls. But polls for my opinion? Nope. Nada. So, where do these powerful pollees (?) live? I've watched all these Republican Senators talking about "their polls" (Does that mean they made the calls to those whose answers they wanted?) show people do NOT want the new Health Care Reform bill, do NOT want a public option, and of course, the pollees think President Obama is doing a lousy job.

The national media takes polls too and it seems Americans don't want a public health care option. NOBODY POLLED ME, as a matter of fact, I don't know of ANYONE who was polled. Does Mr. Chad do the counting? If you believe everyone else is wanting something, won't you want it too? That is the way we roll in America, isn't it? Starts in elementary school. Fit in. Become Borg. Smile enough and pretty soon your brain thinks you are actually happy, right?

All I'm saying is this: If you disagree with your Senator---LET THEM KNOW. Get the facts. Don't be bullied. Learn what a "Fascist" is, what socialism is, what a "public option is," and if your health is great, your bills are no big deal, consider that you are an American! Remember how you felt on 9-11, when you felt a bond with everyone you passed, when you wanted to help however you could? Your fellow Americans are suffering, and talk about health care reform is getting old. We just keep talking and talking year after year after year, but the greedy shout and drown all the talking out so that nothing is left but the next FDA recall crisis

Women will continue to fight for their rights. Gays are not going back in the closet. Politicians will become less white and more mosaic. Your church will still be there for you. If you want to praise God, show how giving to the needy you can be. WWJD? Jesus would have made sure long ago that everyone had affordable, quality health care (He delivered it in sandals and never took a coin for it.) and he would wonder how he could have made it any clearer that you are to love your neighbors, even your enemies. Don't let mere humans put fear in your hearts.

Words From My Mother

This is my mom, holding two of her brother's sons. You see, boys used to play with dolls!

Here are some of my most memorable words from my mom:

Diane: (age 4) " Why does Uncle Arthur call them that?"
Mom: "Because he doesn't know everything."

D: (age 4) "I'm hungry."
M: "You be Heidi and I'll be your sister and we will pack cheese sandwiches and climb up a mountain in the Alps and have a picnic!"

D: (age 3-4) "Woof!"
M: "If you keep that up, you are going to turn into a dog."

D: (age 3-4, very angry) "They get to do everything! I can never do anything!" (Older brothers)
M: "They are older. But, remember, they will die before you. You will live longer!"

D: (age 5, after first day of kindergarten) "Those kids are so stupid."
M: "Don't talk like that. You will always be smarter than other people. Never judge someone until you have walked a mile in their shoes. My father taught me that."

D: (age 5) "Why doesn't Aunt Vi like her?" (my much older mentally retarded friend)
M: "Aunt Vi doesn't know everything."

D: (age 7) "Can I have a dog?"
M: "No."

D: (age 7) "Can I have a dog if I pay for him myself?"
M: "No"

D: (age 8) "Can I have a pony?"
M: "No."

D: (age 9) "Why didn't you go to college?"
M: "I wasn't smart enough. I had you kids. But you can go. I didn't raise dumb kids."

D: (age10) "I'm never going to get married."
M: "You will change your mind one day."
D: "No, I won't."
M: "You are so stubborn."
D: "Aunt Vi never got married."
M: "Then don't get married. You are just as stubborn as Aunt Vi."

D: (age 12) "Would it be ok if I married a black man?"
M: "As long as he's nice to me."
D: "What about a woman?"
M: "As long as she's nice to me."

D: (age 13, shouting) "Why don't you find a nice man?" (She was dating a heavy-set overall-wearing, bald farmer.)
M: "LOOK AT ME. I CAN'T DO ANY BETTER!" (I never felt more sorry for my mom than at that moment. She was unkempt, smoking, in a filthy house---I tried so hard to not see her like that, we both played that game.)

D: (age 17 with a broken heart) "You just don't understand!"
M: "I understand better than you can imagine." (I had not considered the love of her life leaving her on the day I was born.)

D: (age 20 during my foray with men) "I just think if I marry him, I will always want something else."
M: "Don't marry him then."

D: (age 32) " The Today Show wants to interview me about being gay. I am asking you first, if that is ok with you."
M: "NO. The world can change fast. Just forget it. Wait until after I'm gone."


D: (age 39) " It is hard. Do you think I should see a doctor?" (My lower abdomen)
M: "NO! If it doesn't hurt, just ignore it. Take an aspirin." (It was ovarian cancer. I went to a Dr.)

D: (age 44) "You always favored my brothers!"
M: "They needed me more than you. You were always so strong. You weren't like me."
D: "You used to say I was just like you!"
M: " I know. I don't know what happened to you."

M: "I'm scared. Will it hurt?"
D: (aged) "No, you will just keep forgetting things."
M: "Oh. Okay."

Here is The Health Care Bill H.R. 3962

http://docs.house.gov/rules/health/111_ahcaa.pdf

Ellen, Portia, Anne Heche, and the Oprah Kiss of Death

Ellen, was that a good idea? Really? Some say a celebrity couple on Oprah's TV show is the kiss of death. Don't you remember when you appeared with Anne Heche and said almost the same words, "I'll be with her 'till I die." How old was Portia then? Anne said Ellen was the only woman for her and loving a woman was her "choice," that she had only been attracted to men before. Well, at least Portia doesn't admit to being bisexual---but I saw the same look on your face Ellen.
Here's hoping Ellen and Portia break the Oprah curse on Hollywood couples.

Portia didn't get the chance to plug this, but I will---The Ally McBeal TV series finally got permission to go on DVD, where Portia is shown in all her sexiness.

Today Show Bipolar Wife Interview--WHY?

On Today Show, a husband says his bipolar wife staged a fake kidnapping. Matt Lauer is talking with him. WHY is this family stuff our business? WHY do these family members show up on TV? There MUST be something more interesting. Husband is taking advantage of his wife's illness.

The Death of Blogs

Who really reads blogs anymore? Are they next on the grim shredder? Do people keep diaries anymore? Why should we care?

My mother's diary is in a box in my bed room. She was 18 when she kept it. I can see where she pressed harder with her pencil, when she erased (rarely), when she seemed to write faster---handwriting reveals much. She found my father that year, kissed him for the first time, fell in love? And I have that 63 year old plain blue covered diary. Could she ever have imagined it would still be around in 2009?

Coincidentally, the first diary I ever got, at age 20, I still have. I wonder where it will be in 30 years? More life-changing things happened in that year, 1979, than any other. But this blog? Where will the stories here go? I might as well be whispering alone in the dark. My stash of floppy disks are long gone. While Thomas Jefferson's signature remains forever, I can't even sign my blog. I know my mother's signature. She knew mine from the hundreds of letters we exchanged.

Permanency has been taken from us. You may argue that technology can keep data longer, will last as long as Tupperware. Perhaps that is true for large institutions, but for the average you and me? I have never felt so easily forgotten as when I blog. And the feel of paper, the sound as you turn the page, email has abolished that sensual experience. No email or "text" is as romantic as a love letter. Do you read your laptop while on your throne? (You know what I mean, Jen.)
Does you canary poop on your laptop?

I guess we can't shred a blog. Just tap "Delete"----gone forever.

MS Funding Needs Better Direction

Hot off the press! New research shows that those with fewer relapses in the first 5 years of MS were more likely to have a worse outcome. OK, now, excuse me, but this was told to me (and I read it) the year I was diagnosed--1990! This is OLD NEWS. So, I went to the NMSS web site and sure enough they talk about this great discovery. And, is it me, or can YOU understand this convoluted sentence? "They focused on the relationship between relapses during the first five years of MS, years 5 to 10, and after more than 10 years, and progression. People who had more relapses within the first five years of disease were more likely to reach an EDSS of 6. Relapses during this period had the most impact on early disease progression. However the association between early relapses and progression decreased over time, so that people with early relapses who did not experience significant progression early in the course of their disease (did not require a cane to walk by year 10 or did not transition to secondary-progressive disease) were only slightly more likely to at longer-term follow-up." HUH???

Look, I was told that how well I was doing at 5 years would show how I would end up. If I needed a cane, then I would probably never need a wheelchair, if my eyes were okay, then they always would be and so on. I couldn't WAIT for that 5 year marker! I was doing super! Remitted all my troubles away! Then...I got ovarian cancer on year 5. Bum-mer.

That experience really reminded me that MS was just one health condition my body might have to deal with. I thought if I had MS, I had my disease and that would be that. Ha! Fate---a sinister Jekyll and HIDE! So, anyhoo, all this research was funded by the MS Society. THIS was a good idea? We ALREADY KNEW this. Oh, and I love the last sentences on the NMSS site:

"More research is needed to understand the full effects of relapses on disability progression, and how disease-modifying drugs impact the long-term course of MS." Really? Let's try learning something new next time, eh what?

Ted Kennedy Rejoice! Quality Health Care for All

House passes Health Care Bill---Let us never again allow our citizens to live without health coverage. Stop fear tactics. Stop worrying about your next election. Do the right thing by your fellow Americans. I'm ready to give up donut holes. Let's get behind our president, and Teddy, enjoy an ale with your brothers tonight!

New Book About MS, The Healing Project

Debra LaChance fought cancer and is the definition of winner. To fight our health problems we must do more than survive them, we must conduct a pursuit to help others fight their own battles.

"And those are the people I want to help me build The Healing Project community. In addition to my daily work during my treatments and during my second round of chemotherapy, I began to develop The Healing Project as a place where people can contribute funds for research, time for connecting with and mentoring others and, most of all, a place to share their stories." Read her story here.

LaChance Publishing has sold books filled with the personal stories of those whose lives have been touched by breast and lung cancer, autism, Alzheimer's, and most recently multiple sclerosis. The "Voices of..." Book Series is critically acclaimed, and 100% of the net proceeds go toward the foundation Debra LaChance has started. Read about The Healing Project and buy a book for yourself or a loved one who is dealing with a health condition in the book series.

When I was first diagnosed with MS, I searched (and purchased) any MS book I could find. I still have them all. But, with the exception of a few autobiographies, there were no stories about the experiences of regular people. I had learned the technical aspects of my new friend (multiple sclerosis), but I would have given anything for a book like "The Voices of Multiple Sclerosis."
Not only does it cover, in easy to understand terms, all the facts about MS; but, it is filled with short stories written by others with MS, as well as those who care for someone with MS.

Unlike many other books, it is light-weight and easy to hold. I couldn't put it down until I'd read every story. I am honored to have one of my stories included in this book, and that will make my mother very happy. (She has no computer and never understood what a blog was.)

Inexpensive, easy to order online (and available in all bookstores, at all online booksellers, in most major libraries and at http://www.lachancepublishing.com/ This would make a great holiday gift for a newly diagnosed Mser, or anyone who wants to better understand multiple sclerosis.

Torture Chamber for Wheelchair Users

Nothing Important

Oh, I don't really have much to say. I found an old tape recorder and after getting new batteries in there, I thought I would record "post ideas" whenever they came to me. Yep, there it sits, right next to me...yep...filled with ideas...yep....ever have one of those days where you just aren't into posting anything? This would be one of those days. Yep.

My partner is having some surgery on her colon Friday. I guess I'm preoccupied with that. She is like the scarecrow from Oz, we keep putting her stuffing back in, but it keeps falling out. She used to dance...and draw, paint, make movies, act, take photos...yep...I guess I'm sad today.

Tomorrow I will feel better. Sad never stays with me for long. I never knew that a blog would be such a commitment. Maybe that commitment is only in my head, but I can't stand the thought of people clicking on MY blog and seeing the same story they already read. New viewers can read a years worth of crap, er, stuff, I try to keep chronic disease light, non-threatening, even funny when possible. I try to share my personal life, my family stories that still engage me---I will be that old person sitting alone in a room waiting to tell a story I've told a million times before. I enjoy hearing people's stories, quid pro quo. Oh my gracious! I know some Latin!

For some reason I think about my aunt Vi a lot when I write. I miss her. I miss my mom. I miss getting greeting cards and letters from them. I knew I would, but I thought they would be dead. This is a strange missing. They are alive, just not anywhere I can look into their eyes, laugh with them, tell them I am an author. I never was anything but a kid writing for fun, only being in a book with two covers was a writer to them. They never understood the Internet. The race was on. Could I do it? Could I get one of my simple, little stories between covers before they died?
I have been submitting shorts since I was 18. Nothing. My family stories were too complicated.

MS, cancer, my job with the city of Seattle, suddenly I had substance to write about that people seemed interested in. And then Blogs! You can put anything on your blog. I still am amazed people want to read what I write. Now, finally, I have a story between two covers. My name can be "searched" on Amazon.com and something appears! (Not that my mom or aunt Vi have a clue what Amazon.com is.)

A site called Vibrant Nation, for the over 50 group, asked me to write a letter to myself at age 18. Wow, I wrote it and cried like a baby. I totally went there and imagined reading it at 18, a year when I was suicidal and saw no light at the end of my tunnel or anywhere else. What I wouldn't have given for that letter, then. I highly recommend it to you to try. Yep.
(Why do some people write "yup?" or "yep? a regional dialect dealie?) If only I had a letter NOW from my 75 year old self.

Kickbacks Alive and WELL in Drug Dealings

U.S. Also Files Complaint Against Two Atlanta-Based Nursing Home Chains and their Principals

WASHINGTON, Nov. 3 /PRNewswire-USNewswire/ -- The nation's largest nursinghome pharmacy, Omnicare Inc. of Covington, Kentucky, will pay $98 million, and drug manufacturer, IVAX Pharmaceuticals of Weston, Florida, will pay $14million to resolve allegations that Omnicare engaged in kickback schemes with several parties, including IVAX, the Justice Department announced today. Approximately $68.5 million of the settlement proceeds will go to the United States, while $43.5 million has been allocated to cover Medicaid program claims by participating states. At the same time, the United States announced that it has intervened and filed a complaint against two large nursing home chains, Mariner Health Care Inc.and SavaSeniorCare Administrative Services LLC, both of Atlanta, and their principals, Leonard Grunstein, Murray Forman, and Rubin Schron, for acceptinga kickback from Omnicare in return for pharmacy services contracts.The settlement with Omnicare - the nation's largest pharmacy that specializes in providing drugs to nursing home patients - resolves allegations that the company solicited or paid a variety of kickbacks. The company allegedly solicited and received kickbacks from a pharmaceutical manufacturer, Johnson &Johnson (J&J), in exchange for agreeing to recommend that physicians prescribe Risperdal, a J&J antipsychotic drug, to nursing home patients. J&J's kickbacks to Omnicare took multiple forms, including rebates that were conditioned on Omnicare engaging in an "Active Intervention Program" for Risperdal and payments disguised as data purchase fees, educational grants, and fees to attend Omnicare meetings. The government further alleged that Omnicare regularly paid kickbacks to nursing homes by providing consultant pharmacist services at rates below the company's cost and below the fair market value of such services in order to induce the homes to refer their patients to Omnicare for pharmacy services. The government also alleged that Omnicare solicited,and IVAX paid, $8 million in kickbacks in exchange for Omnicare's agreement to purchase $50 million in drugs from IVAX. These allegations against Omnicareand IVAX, now a subsidiary of Teva Pharmaceuticals Industries, Ltd., are detailed in a complaint unsealed today and originally filed under the qui tamor whistleblower provisions of the False Claims Act in the District of Massachusetts. "These defendants broke the law to take advantage of our nation's most vulnerable citizens - the elderly and the poor," said Tony West, AssistantAttorney General for the Civil Division of the Department of Justice. "Illegal conduct like this can undermine the medical judgments of health care professionals, lead to patients being prescribed medications they do not need,and drive up the costs of health care." Assistant Attorney General West thanked the collaborative efforts of the Department of Justice's Civil Division, the U.S. Attorney for the District of Massachusetts, the Office of Inspector General of the Department of Health and Human Services, the Food and Drug Administration Office of Criminal Investigations, and the Federal Bureauof Investigation. "Omnicare and other nursing home pharmacies specialize in providing drugs to elderly patients who are often suffering from Alzheimer's Disease or dementia and who have little or no control over the drugs they receive," said MichaelLoucks, Acting U.S. Attorney for the District of Massachusetts. "Today's settlement provides a strong message to these pharmacies, as well as to pharmaceutical companies and nursing homes, that the government will not tolerate the payment of kickbacks which can distort proper medical judgmentand put profits ahead of good medical care." As part of the settlement, Omnicare and IVAX have agreed to enter into separate corporate integrity agreements with the Office of Inspector General of the Department of Health and Human Services. Those agreements provide for procedures and reviews to be put in place to avoid and promptly detect conduct similar to that which gave rise to these matters. In a separate action, the United States alleges that Omnicare, Mariner HealthCare, SavaSenior Care, Grunstein, Forman, and Schron conspired to arrange for Omnicare to pay the nursing home chains $50 million in exchange for the right to continue providing pharmacy services to the nursing homes, which together constituted one of Omnicare's largest customers. According to the government's complaint, these defendants attempted to disguise the $50 million kickback as a payment to acquire a small Mariner Health Care business unit that had only two employees and was worth far less than $50 million. After they became aware of the government's investigation, Grunstein, Forman, and Schron allegedly created backdated documents in a further attempt to hide the kickback. These allegations are detailed in a separate complaint that was unsealed today.Today's settlement resolves the allegations against Omnicare and IVAX; the United States will proceed with its case against the Mariner Health Care defendants, which was originally filed as a whistleblower action.

SOURCE : U.S. Department of JusticeU.S. Department of Justice

Liberal Complacency Lurking in the Wings

Rumor has it that the GOP is all aflutter over recent election wins on the East Coast. I hear this has energized the GOP and they feel empowered to move "full-speed ahead" into a future of Obama bashing by any means possible.

Oh, I feel their means, I just don't hear to what ends they plan their agenda. Do you?

This brings me to the shot heard 'round America: Liberal Complacency.

What happened to all that love and support liberals showered on Obama last year? Only a battle was won, the fight will rage on. Republicans are that bee you swatted, but didn't kill; they are pissed off and seek revenge. And trust me, America will get stung.

Look forward to America's problems being blamed on our current president. It will not matter that he inherited the most screwed up country in all history. It will not matter that soldiers die in a war he didn't start. The debt will be his burden. The naive will be the liberals. Dare I say it? The South shall rise again, with sweet summer breezes blowing sheets on the back yard clothes line.

If that is our future, liberal complacency has trodden again on our nation's hopes and dreams of being called, by more than the GOP and fanatic religious groups, the Greatest Nation in the World.

Secret Recipe From 1800s Revealed

When I was a little girl my mom had some orange-brown goop in a white plastic jar. It had a smell like nothing I can compare it to. When I had a splinter, the goop went on and next day splinter was out. Mom used it for other things and it seemed to be precious. In fact, when I left Indiana in 1979, that jar was still in Mom's house. (I was 22 when I left.)

In later years I wanted some of that goop and even thought, hey! I could make a million manufacturing/selling it. Mom told the story of one day her Pop went on his usual morning farm duties, but by dark, only his horse returned.

Grandpa had accidentally swung his ax across his lower leg, ripping off a chunk. He shouted for my mom, a small girl herself, at the time, and Mom ran out to limping "Pop" with "the salve."
He had her slather the hole in his leg with it and within a few days his leg was fine. Ka-Ching!

When I tried getting the recipe, I ran into resistance. Homer (My mom's brother---Pop was dead.) didn't seem anxious to give up the secret ingredient. After many years of asking for it, Aunt Vi finally made Homer write it down. I was sent the recipe!

Besides the difficulty in reading 90-something Aunt Vi's (And she was the baby in the family.) handwriting, there was one ingredient totally illegible. She wasn't sure either, so I called home on a night I knew the keepers of the secret would all be at my mom's, playing cards. I stayed on the phone while Uncle Homer read each letter aloud to spell the word. I had never heard of it.

My better half (i.e. smarter half) had, and said it sounded like opium. WHAT? (Better half claims to know this from reading Sherlock Holmes...) So, I looked it up and sure enough---OPIUM. No wonder my family "used it for everything."

During my next trip to my medical Captain (my Internist, my Team of doctors Leader), I told the story of an old family recipe and could he please prescribe this one ingredient. I showed him the recipe. He has learned I am a kidder of sorts, that I keep things light, so he just looked at me, "That is opium. I'm afraid I can't prescribe that."
"I just want it for removing splinters." (And getting rich.)
"Sorry."
"Well, how did they get it back then? Can't it be made from poppies?" (Lots of poppies in Seattle.)
"I guess so, but you would need a LOT of poppies." We both laughed.

I still have the recipe...

FREE DRUG COUPONS

http://disablednotdead-anne3.blogspot.com/2009/10/drug-coupons.html#links
Thanks to Anne at DISABLED NOT DEAD

That First Call, "I Have MS," to Mom and Spouse

After I sat with my always preoccupied (with his divorce situation, he took her calls right in front of me, "Your test result shows," brrrr, "Hello? " NOT COOL, Doc.) neurologist, and he explained using my MRI picture that seriously belongs in the Louvre, that I had multiple sclerosis, during my drive home I was imagining telling my significant other (my mom) and oh yeah, my partner of 11 years (in 1990), the news.





Naturally, I personally was overjoyed! I thought for sure that I had a brain tumor, back then that was a death penalty. I'd been having obvious neurological symptoms for years and they kept getting worse, I deduced (this was in the olden days before Google) it was a brain tumor and my inattentive neuro had said "It could be many things. Yes, a tumor is one of them, just have to wait and see," so yeah, I didn't know much about MS, except that it wouldn't kill me.





First I practiced pronouncing it, whew, that was a challenge, and I'm a horrible speller so that would be next, but I knew what my mom would want to know. "Is that Jerry's Kids?" For the first time my home in Ft. Wayne, Indiana, seemed very far away from my current home in Seattle, Washington.



Brrrring, Aunt Vi answered, oh no, the worrier extraordinaire in the family, "Hello?"

Diane: "Hi, Aunt Vi, can I talk to Mom?" (This meant there was something serious going on and Aunt Vi knew it. Before this day, I had never mentioned any of my health concerns to them. It just wasn't done. Unhealthy people were thought of as having a "weak constitution," or on death's bed. This was going to be very upsetting for Mom and Aunt Vi, and I knew it.

Aunt Vi: "Sure. RO-SE-LYN! It's Diane!"

Mom: "Hello?"

D: "Hi, Mom. I went to the doctor and I have MS."

M: "Oh...is that Jerry's Kids?" (I KNEW it!)

D: "No, it's a problem with all my nerves and my brain. I won't die, but I won't walk good and stuff like that. I might need a wheelchair one day."

M: "Does it hurt?"

D: "No."

M: "Oh, that's great, Hey! Will you get to get one of those handicapped parking stickersex so you can park close to stores?" (She was exuberant!)

D: "Yes, I guess so."

M: "I always thought that would be so neat!"

D: "Yeah. Well, I just wanted you to know. I better go now. You tell Aunt Vi."

M: "Oh, sure. Talk to you later."

D: " Ok, bye."

M: "Bye." CLICK



Well, that was a surprise. I forgot that she would want to know if it hurt. That is always her big thing and her way of judging how serious anything is, if it hurts. The parking permit was a surprise. Had I known, I would have led with that.



Over the years we would never discuss it much. Aunt Vi would coax her and admonish her for not asking how I was doing, but you see, my mom was afraid to hear bad news on that front---it would make her sad. She could not bear to know her children were suffering in any way. Easy fix, just don't ask. We had the "Don't ask, Don't tell" policy long before Clinton. No matter how I tried to explain MS to them over the years, they never really understood it.



My first call after I got the DX (stands for diagnosis), was to my partner. She and I had discussed what it might be and we ended with, "Whatever it is we'll deal with it." That saying would become our theme song over our 30 years. She was at work and it went like this:

Brrring "Karenlee speaking."

Diane: "Hi. I have MS."

K: "Okay. You okay?'

D: "Absolutely. We'll talk when you get home."

K: "Ok."

D:"Bye."

K "Bye. I love you."

CLICK



We had previously spoken a lot about what the MRI might reveal and how we would handle the different scenarios. We had researched different brain conditions. We had thought through financial plans and the 2 story condo with stairs that we had recently put a down payment on, our first freedom from renting. We had it all covered and MS was our favorite outcome. Yes, it was good news for us that day.



Both phone calls, in total, lasted no more than 4 minutes. I hung up the phone, sat by the window overlooking large evergreens and our condo in the distance, and took a deep breath. As is true, from what I read and hear from others with MS, I was very relieved that I didn't have a brain tumor or some cancer. After 30 minutes of feeling happy, I set off to the library to find books about MS. Let the adventure begin!

Top Five Celebrities with Disabilities Who Touched My Life

My list of Top Five Outstanding Celebrities with Disabilities :



1. Helen Keller I first learned about Helen Keller when I was 5 years old. After seeing a movie based on her life, I had to read books about her. My admiration for her public speeches about politics and carrying on with life as it comes will never end. She was the first person who was deaf and blind to earn a Bachelor of Arts degree. She died in 1968 at the age of 88. "Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved. " Helen Keller
Ckick here to see clip of how Helen Keller learned to speak.



2. John F. Kennedy He was my hero when I was in kindergarten. When I learned along with millions of others that he had Addison's Disease, his heroic feats during the war and his political tenacity made him larger than life. Before the 1930's almost 90% of those with this debilitating disease died within 5 years of diagnosis, with this and constant back pain, Kennedy remains one of our most beloved presidents.



3. Geri Jewell was a regular on The Facts of Life TV show when I was a teenager. I had never seen a real life person with a disability portrayed with such grace. She didn't have to act much! She has cerebral palsy. She continues her acting career, stand-up comedy, and check out her blog!

http://gerijewell.blogspot.com/



4. Barbara Jordan Long before I had multiple sclerosis in my life, I knew about this political power house who was considered as a possible running mate for Jimmy Carter. A woman? An African American? About time! I couldn't find out much about MS, but I knew it must put people in wheelchairs. That didn't stop her though and now I think of her often. Oh, and she lived her life with a woman.



5. Christopher Reeves I had a magazine photo of him above my work desk during my working MS years and he inspired me every day. If HE can do it, without complaining, how dare I not?



Honorable Mention for acting parts: 1. Patty Duke as Hellen Keller in "The Miracle Worker" 2, Marlee Matlin a deaf actress starring in "Children of a Lesser God", playing a deaf woman who falls in love with a speech teacher. 3. Michael J Fox playing a war vet in the TV show, "Rescue Me." An actor with Parkinson's portraying a paralyzed war veteran---wow! 4.Tom Hanks playing a man dying from AIDS in the movie, "Philadelphia". 5. James Woods as a patient with ALS on "ER."

There are many more I could add. Who is on your list?

My Parents Treat My Kids Better Than They Treated Me

Sometimes we see anger in people whose parents treat their grandchildren "better than they treated me." GRANDPARENTS! Listen up! I get it, you feel you screwed up with your own kids and now have a second chance. Great! You learned a lesson. But, you are fixing your mess the wrong way. People learn by example. If you didn't spend enough time with your own children, don't smother their children with your attention. You must give your attention to two generations now, both at once. Speak it aloud to all involved, "I didn't ___ and now I am going to." Then, include both sets of "kids." Look! Right there! You taught two important lessons. (And that is what life is about---teaching and learning, growing. You don't get a pass either, even if you HAVE no kids, teaching and learning is what gives life purpose, without purpose you will die an empty soul.) "I RAISED my kids, now I can just sit back." WRONG (Well, you can, but again--empty soul.)

The, "You can't teach an old dog new tricks," may be true for dogs, but in humans we know now, thanks to scans of the brain, that is not true. I hate hearing, "It's just the way I am" and "It's too late to change now." Baloney. Every day holds a chance to change the world, to change your life, to be happy and make someone else happy. Life is short, make your mark, leave this world a better place than you found it. Well? What are you waiting for?

Day the Pumpkins Rule!

Happy Halloween, Everyone! From me and my friends at my new home!