Placebo Effect, End the Stigma, Redefine

Again I must mention the placebo effect on MS and chronic illnesses. Big Pharma is sweating over their data. Our own body making us better? Trial after trial, the facts scream out, "LOOK AT ME!" But these facts are data the pharmaceutical companies prefer to shut up.

And what about we, the ill? Are we afraid the real answer to making us better lies within? Are we afraid to take responsibility for something that seems so unknown and dangerous? Is the stigma of "it's all in your head," scaring us away from a realistic definition of that ? We and others think it means we made it up or the suffering is not real. Can't we empower ourselves by redefining that old phrase to mean "it is within the realm of possibility that our brain and body can work together to find quality of life, maybe even cure.

Ok, start the cussing now, but facts remain---the placebo exists and it helps many people feel better. I want to know why and how. I want the drug companies to show us all their data regarding this and not drop out people who get better on a placebo, but instead STUDY THEM.
Together with the right medicines we could have a powerful weapon.

Thoughts?

MS Tips for the Toilet. SPMS-Don't Let it Keep You Down

As Ms continues the chomping away at your nerve coverings, eventually you will buy grab bars for around the house. There will be hundreds to choose from, hundreds of opinions about where to place them. Don't worry about getting it right the first time. You will learn as you go, but the decision needs to be yours. Try different places, "a little to the left." "no, back to the side," "higher," "lower," all part of the process until your Goldilocks says , "JUST RIGHT!"



Always try to get a prescription for any assistance aid you need for your MS. (Would you believe I didn't do that for years? "Oh, a cane is just $15.00," hey, it adds up fast.)



In Seattle, what I thought one would consider a major U.S. city (drip drip) (sound of sarcasm), there were two medical supply stores in town. The big one had a monopoly and deep ties with the major hospitals---never going to get a deal there. It got pretty depressing over the years, then the smaller store closed up and left. I will refrain from using profanity, like "screwed," but you get the idea.



One day I happened upon a small building that had a sign saying it was a medical supply store. Indeed! I felt like a kid in a candy shop! (Didn't they stop making candy shops years ago? Or have they made a comeback?) This store had things I never knew were possible and the floor salesman's wife had MS! YEA! I must have spent over $1,000 that day and went back a week later for more.

My point is that the physical assistance items is a growing industry. They learning to build for the consumer and your choices will be much juicier than mine were. You may never know how lucky you are, and it is still in its infancy.

But, today's tip is for rising up. One day it seemed I couldn't get out of the bath tub or stand up from my toilet very well. In fact sitting DOWN on the loo was becoming more like dropping down. As my quads grew neurologically weaker, my butt bones were feeling the smack down. "What happened? Shoot. Hey! and finally: OW!

With every problem with rising up is the problem of going down. The greatest gift God has bestowed upon a MSer: the raised toilet seat. That soon progressed to an addition of hand railings secured to the toilet. Amazing how such an inexpensive, simply constructed, item can change a life. I wonder what they did to solve this problem in the early 1900s...

Here are a few online sellers:
http://www.toiletseatsource.com/toilet-seats/raised-toilet-seats/7053+7054+4293632552.cfm?source=googleaw&kwid=raised%20toilet%20seat%20with%20arms&tid=exact

http://www.elderdepot.com/

http://www.spinlife.com/ (Great customer service!)

Or just Google "Raised toilet seat"

What Alzheimer's Can't Take from this Daughter

My mother has Alzheimer's. Sometimes she remembers my name, sometimes she doesn't. I don't care, we just laugh about it. Mom and I always laughed a lot. I felt it was my duty to make her laugh, her own life left little to be cheery about. Anyway, her numero-uno request when she visited me in Seattle from her home in Fort Wayne, Indiana, was seagulls---she wanted to see seagulls!

No problemo, off to a local gull hangout, and they showed off for her, catching the stale bread she tossed in the air. I had never seen her so happy. So, now when she forgets me it is no big deal. We spent many years laughing together. No disease can take that away from us.

http://www.alz.org/index.asp Alzheimer's Association

Alive and Well in Nursing Home at 102

Here she is, my great aunt Violet Donna Lucille, 102, check out her painted nails and stylishly crossed legs. That's aunt Vi. She hates the wheelchair, but they make her use it. (She can't really see worth a darn.)

I asked her what the secret was to living healthy so long. She said, "Oh, hell, just do whatever you want." And she always did, as long as her body let her.

Leg Lifter Life with Secondary Progressive MS

Help! I've dropped my leg and I can't get it up!

When I first heard of a leg lifter I thought, "Great! I can lift to walk!" Nope. That won't happen, though I should patent ways I think it could. Anyway, it fits around your foot/shoe and you can pull to lift the lazy (my bad, not lazy legs fault), I mean MS affected leg.

This worked in so few ways for me that I changed its purpose. (Look at link to see a way YOU might be able to use it when you just need a little lift into a car, etc.; that might have been ok when I was RR (relapsing remitting), still driving/bathing, but during those years I just swung my leg around or lifted by hand.

How does the device help me now? It sits in my lift-chair pocket and is high enough to hold the remote for the lift-chair, a perfect fit. Before these years I used it to grab my feet and exercise them by pulling and making the feet move back and forth while I reclined.

The point? Some devices may be used for purposes which they were not designed for. Never give up on a device, think out side the box and use some "off label."

http://www.dynamic-living.com/product/leg-lifter/
These can also be bought at Amazon.com

Not Another Death

I'm really finding it hard to write on my blog. So many people leaving lately...I just want it to stop.

Measure Health Care to Improve It

"Measure twice. Cut once." Tried and true advice that goes for just about any project we attempt. Same goes for quality health care. While our government debates and stalls on health care reform, communities across the United States are joining together to begin discussing and dealing with our current health care meltdown.

In the Seattle area the Puget Sound Health Alliance is a group of medical professionals, insurance and pharmaceutical company personnel along with patients (consumers) joining together to take action toward making quality health care a reality for all who need it.

They are currently focusing on gathering quantitative statistics from area clinics and hospitals to establish baselines and goals, so that improvements can be implemented and most importantly---measured! We simply can not wait another 4 or 16 years to turn around the dive of our health care in this country. And we certainly can't depend that our elected officials will ignore their political gains on our behalf.

Last night I was able to catch a representative from a local diabetes clinic who spoke of doctors and nurses who were volunteering to help the many uninsured diabetics get the treatment needed. VOLUNTEERED---Shades of JFK, "Ask not..."

If only we stand up across the country and say, LET US BEGIN. We will live together or die alone. That too is tried and true. Read about the alliance in Washington THE STATE and see if your community is getting involved. If not, maybe you can begin measuring.

http://www.pugetsoundhealthalliance.org/index.html

Necessity for SPMS Tip #3 Can You Hear Me Now?

Most phones, even cell phones, come with "speaker" functions now and this is a necessity for this secondary progressive MSer. I can not hold a phone to my ear for more than, oh, maybe 5 minutes, without becoming exhausted. I also need a phone of some sort in every room. My cell phone goes in my power chair whenever I do. When you can't stand or walk, then you must have a way to reach others.

Alexander G. Bell, I thank you.

Life with SPMS Tips: Fall Help

Tip #2 for living the good life with secondary progressive MS: You need a life alert system, use your search engine and choose from many---call them, speak to a live person (never a dead one, but you knew that), and have all the details mailed to you first (or download and print if you have the equipment) and read the small print.

There will be a contract. There will be a set-up fee and monthly fee. You will get a console that the alerted staff will speak to you on (shout, actually), when you press the button on the small pendant you'll wear around your neck or wrist. Mine is waterproof, can be worn during baths and the staff can hear me from any room in the 1200 sq ft I lived in. (Even when I was outside and down the hall!)

Mine is about 5 years old, never had a malfunction. I've fallen 3 times when I needed it and Medics came right away. Even if you are too hurt or weak to call out, they will send medics.
Your insurance may even cover it, mine does.

I don't recommend any company over another but here are a few links to check out. (Great for parents living alone.)

http://www.lifealert.com/

http://www.lifeguardianmedicalalarms.com/?gclid=CN-0v-jSvZwCFSn6agodUEelmA

http://www.medicalguardian.com/

Sub Group MS Testing at UCLA //My Journey with MS

KIM! I can't post a comment on your blog! I can't wait to hear about the sub group MS testing. Check out her blog MSers and let me know if you can click on post comment and actually do so. Great post btw, Kim. http://myjourneywithms-kimberly.blogspot.com/

Tips for Secondary Progressive MS Living

Once your MS progresses to secondary-progressive (one time you don't mind coming in second!), it actually can be a great opportunity to move forward. During relapsing/remitting, you never knew what to expect each day. It was difficult to make plans. Now, I can plan again.

With secondary-progressive you pretty much know what the day will bring, what body function will fail or want to play games with you. You are prepared to react. (You have done it so much before!) MS is becoming boring. The kiddie merry-go-round, no longer the grand roller coaster, you have a ride you won't feel out of control on.

I have discovered many devices and tricks to make my secondary-progressive life easier. As with many ADA (Americans with Disabilities Act) requirements, changes made will help everyone proceed through life in an easier fashion. So, over the coming weeks I will share some of my "tips" for living life to the hilt with MS. Most are common sense "why didn't I think of that" or "I thought of that" tips, but they were miracle finds to dumb me.

Tip #1 The "Handy Switch, Easy to Install. No tools, no wiring, no mess!
Handy Switch uses radio frequency that penetrates through walls!
Each Handy Switch wireless unit has removable adhesive - move from place to place when you need to.
Handy Switch Works up to 60 ft.
Handy Switch only works with lamps and other devices that plug into a wall outlet."

I can turn on/off lights and my much needed fans while I stay seated in my left-chair. I can't imagine life without it. It has given me great independence. These are inexpensive and sold at hardware stores and many dept. stores and of course the shopping mall of SPMSers: INTERNET.

Doll Sex and Birthday Wishes

Happy 53rd Birthday, Sweetie! Here she is with her life-size doll. She became very, er, intimate with her. Once again, I apologize for never being into the whole pink dress thing. I just don't roll that way. Would our parents just die if they knew all the sex games we played with our dolls? Ken and GI Joe both fighting over Barbie? Poor Ken, just not enough man for Barbie, and what they did together when the lights were out...but, back to you, Happy Birthday and you have really had to fight through a lot in your life--you are a survivor. I admire you. You have kept me sane in an insane world and I will have lived knowing at least one totally honest human being. Thank you.

Office Job with City Utilities

Here is what I did working for the city of Seattle for 18 years. Connected to a phone and using a computer, I answered incoming calls from citizens, any question you can imagine about utilities and Seattle, plus I handled billing and anything to do with accounts. I also answered all City Light emails from customers during my last 2 years. Note my postcard collection on cubicle---from the Seattle Art Museum, famous gay people. And of course I read intellectual magazines between calls, hahahahaha. 20, then 80 employees over the years, did the exact same job. I took 100 calls a day. It was great fun!

Making MS Friends at Assisted Living Home

I am told that there is a woman here with MS who is not bedridden. (I loved meeting the bedridden woman, that is horrible---she is the former university professor woman.) Anyway, I spoke to her briefly and I hope we will find a game we can play. She seems to be unaffected as far as walking, hard for her to speak. I am so excited. (She looks about my age too.)

Sex, Gangs,Friends, Life in Retirement Home, Assisted Living, Nursing

Man, it was hard getting off to the Bridge game last night. Living in this retirement home has been a real adventure. I'm still trying to figure it all out. How to explain it to you? Yes, as I have said before, it feels much like going to Jr. High School, with groups formed, hierarchies made, gossip, nefarious and genuinely kind behaviours galore.

When my partner's mother, Mary, had to live in an assisted living home, she had many complaints (she ended up trying about 4 different ones) but the most upsetting one was always some difficult neighbor(s). They spied on her, they stole from her, they ignored her, they hated her on and on---she was having problems making friends. Sound familiar? Ever hear this from your kids? Remember how it was when YOU were a kid in school?

Funny, because, as adult children we think about: is the place safe, clean, is the food good, is the staff trained and so on---do we go around and try to meet the other residents before we sign our parents into nursing homes or retirement/assisted living homes? Let me tell you, even if our loved one is so ill they can't speak their feelings---they will have feelings about their roommates or other neighbors.

Mary (I NEVER called her "Mom" because except for the last few years, and maybe then too, she basically hated the air I breathed---oh, how that woman tried me, but never broke me.) went on and on about how the other women were jealous of her ability to have men's attention. She and I were speaking on the phone then almost daily, her 2 daughters were working, I was telecommuting and I was always on the phone anyway, so...I heard all her woes.

Her daughters (my partner during these awful years was dealing with the peak of her illnesses and barely making it) had a hard time fathoming their mom being a sexual threat to anyone, her husband had not been dead long (their father, folks had been married almost 60 years) and the wild stories did seem a bit much. Mary was known to be a bit of a drama queen.

But, Diane believed her or at least gave her the benefit of the doubt---something going on and I wanted to find out what it was. So, one day I went to her home and had lunch with her.

Mary was, of course, thrilled, even though it was me, visitors are few and far between to anyone in such a place. The days between visits become dog days (well, THAT didn't come out right) as in a day in a dog year. (whew! Got outa that one!) And it didn't take long to witness the problem.

As Mary and I sat at a small table next to 4 women involved in conversation and tea, a man in his 80s walked by. Mary immediately reached for his arm and began introducing us. "Bob, this is my daughter's friend, Diane, Diane this is Bob. He likes trains." (laughter) They had some polite small talk, I gave him my business card because he had questions about water quality (Yes, I STILL carry business cards wherever I go---sue me!) and the 4 women at the other table? WOW Was Mary right. Their glares were like daggers. Had they been Laserwoman, we would have perished. I swear their faces turned green.

Most of Mary's calls up to her death, involved some upsetting behaviour she was receiving from others. Such is life in high school, if you are not in a group. Oh, I forgot, I'm talking about adult homes for those unable to live alone. You get the picture.

Now, I have never had trouble fitting in, even if it meant being alone. I'm good with whatever. And the home I am in now has some wonderful people in it. I am so excited about getting to know them all. But, there is definitely a breaking in or through period. And I can already see that certain groups don't hang with certain others. Well, anyway I made it to Bridge. Why do scenes from West Side Story keep popping up in my mind?

Could be
Who knows?
There's something due any day
I will know right away
Soon as it shows
It may come cannonballin' down through the sky
Gleam in its eye
Bright as a rose!
Who knows?
It's only just out of reach
Down the block, on a beach
Under a treeI got a feeling there's a miracle due
Gonna come true
Coming to me
Could it be?
Yes it could
Something's coming
Something good
If I can wait
Something's coming
I don't know what it is
But it is
Gonna be great!
With a click
With a shock
Phone'll jingle
Door'll knock
Open the latch!
Something's coming, don't know when
But it's soon
Catch the moon
One handed catch
Around the corner
Or whistling down the river
Come on - deliver
To me
Will it be?
Yes it will
Maybe just by holding still
It'll be there!
Come on, something, come on in
Don't be shy
Meet a guy
Pull up a chair
The air is hummin'
And something great is coming
Who knows
It's only just
Out of reach
Down the block, on a beach
Maybe tonight
Maybe tonight...

Slow Death of a Kennedy.

I don't know which pains me more...a quick assassination or a year long battle with brain cancer. The good works of the Kennedys will forever touch my soul. Now we wait. Ted Kennedy, the brother, son, uncle, who always answered the call to duty.

What was the First Movie You Ever Saw?

My first movie was The Miracle Worker starring Patty Duke. I was 5 and wanted to be an actress from then on. Probably the idea that people can overcome any obstacle also affected me deeply.

How 'bout you? And how did it affect you long term?"

Crows in a Rothko Painting

It is 5:40am, I awoke at 5:30 to what sounded like hundreds of crows cawing. They were flying past my window. I started counting and stopped at FIVE HUNDRED. In the background is a giant Rothko painting of the sunrise over the Cascade Mt. range. I see how he could paint one of his classics from this. The crows are sporadic now and fewer; but it was more intense than any scene from Hitchcock. (And they flew so FAST!) I wonder what is up.

Bullmastiff and Fritz the Cat

My partner's great childhood love---Barney the bullmastiff. Fritz the cat was tolerated. (That is my father-out-law in the pic.) We all love big dogs, and we can not lie.

Wearing Shorts at Forty, Fat Kids Live Forever

Today I will share something with you I have never told a living soul. I never wore shorts in public until I was in my forties.

Being a fat kid, I always saw myself as fat and was too ashamed. Even though no one else saw me as fat, I still did. Once I even said, "Excuse me," to my own full-length mirror reflection.

The day I ventured out, I was scared to death that people would stare, laugh, and point at my legs. My partner had been telling me for years that my legs were normal, in fact nice legs (THAT extra always made her lose her credibility.) I still have stretch marks on my knees from being a fat kid, yet looking back at photos---I wasn't all that fat, not fat like 2009-fat. People are fatter now. But, in school I was always the fattest kid, the kid nobody picks for their team, the kid who flunks gym and skips school on gym day to avoid being teased and humiliated.

Still, I wore the shorts and nobody looked at me twice! I will never forget that day as long as I live. Unless I get Alzheimer's or something.

How did I let my childhood image control me for so long? It is great to be 50, you can wear purple striped socks to church and hang at a hemp festival in bunny slippers---no, I haven't tried that yet, but it gives me hope.

Cloris Leachman, Linda Gray, Christmas at the Trailer Park

We all have our favorite actors, you know--the ones you will watch a movie for, just because they are in it. One of my longtime faves is Cloris Leachman. She is an award winning, comedic genius, and I think I have seen her in most of her TV shows, guest appearances, and of course Prancer is on my profile as a favorite movie.

Ms. Leachman is working on a new movie, "The Christmas Movie," and it has a host of seasoned cast members, with a starring role by Linda Gray from "Dallas" fame. It is an indie film which means word will be spread, hench my mouth. Read all about it, including exclusive on set rehearsals, at http://rickrockhill.blogspot.com/2009/08/hollywood-inside-scoop-christmas-movie.html the wonderfully fun blog by The Palm Springs Savant.

MS Doesn't Become You

Learning Bridge, watching finches, trying Twitter/Facebook, all seem to have little to do with multiple sclerosis---and that is my point. I can't make it enough. The more you make of MS, the more MS makes of you, don't let it.

Yes, your life has taken you never saw coming, but never forget who is behind the wheel. Your life belongs to YOU, not MS. I never dreamed I would be published in a book, writing a story about MS. Never imagined I'd be in an assisted living retirement home by age 52, so I'll play Bridge. I'll eat bacon and learn to like it. My cholesterol didn't suffer from the meals here and they have grown on me. Looking back, it is all about portion control.

In the past 7 months I have tried and done so many new things. Me eat and LIKE asparagus?! One of my favorites now. I'm thinking bridge is going to also become a favorite. My life goes on and it is richer with the adventures I've taken on. I'll say it again: Look at MS as an adventure. You really never know what each day will bring, but if you focus on new things you can do, instead of reaching for that which is now so far out of reach, the days will belong to you and not to MS.

People here see me as a dumb bridge player, not a person with MS. I like that.

Dummy Bridge Sharks Out to Get Me

Yes, I am still working on my walking plan every day, every day. But, as you know, this is a blog about my "...living with MS..." so it will post many other equally significant aspects of my life. This is one of them.

The card game of choice here is Bridge, and we have players who have been playing for 60+ years. These are my competitors. MY games of choice are Euchre and Poker, neither of which is played here. Soooo...I shall suffer for my new sport of the elite.

There was a "workshop" I attended, but it was not to teach Bridge, it was to help improve sage players. I was a misfit, a dunce, a big L.

So, I sought a learning resource, the book shown, and ordered it to arrive via our assisted living/retirement home's book mobile visit.

First off I, mistakenly ordered "Chess for Dummies" instead of Bridge. "DUMMIES" self-explanatory, then I find out my 2 books (I also ordered Obama's bio) went to the library across from my previous apt. bldg., even though I spent much time explaining to librarian where I now resided, book mobile schedule, etc. NOW, the book mobile will be off duty until OCTOBER! Next stop: the Amazon.

I ordered my book from Amazon.com, got it in 2 days and am now studying Bridge. This is not a game for sissies and I am already feeling more superior to my fellow Euchre players, dare I say "elite"? Drat! Hooked already and can't wait to bust a move at the next Bridge game on the calender here. Wish me luck; the other 70yr+ ers are ruthless and cunning. They smell young blood. Gulp.

Mystery Goat Found in Bed Rooms

I usually watch TV news w/mute on after 6pm. Must share this headline (and NO, I did not unmute, my life is not THAT boring): " Mystery Goat Found in Man's Bedroom. Happening in northern Washington." Yep, life in the big city of Seattle.

Canadian Speaks out on U.S. Health Non-Caring Debate

"Diane Sorry I really am having difficulty watching or listening to any more of the Health Care debate in your country . What the heck is with people? Your system is a mess and all people can do is scream at each other and throw propaganda around. All these politicians who pretend to care, get huge bucks from lobbyists in the health industry ( I say industry because I see very little caring)Now I have to listen to commercials on my local radio station for "faster health care in the U.S." Yeah those greedy insurance companies would love to have another 32 million suckers in Canada to bleed money from .Sorry again, but this is an issue that I care about and I hate to see so many people getting screwedbecause of greed, pure and simple."

This comment is too good to be missed. Ads in Canada??? OMG

Troubled Times, Think of it Always. Tyrants, Murderers, Terrorists

When I despair, I remember that all through history the ways of truth and love have always won. There have been tyrants, and murderers, and for a time they can seem invincible, but in the end they always fall. Think of it--always. -Mahatma Gandhi-

Can't Do Nothing without Each Other

The stock market is up (from what point in time?), but sales are down, a newly found planet is orbiting BACKWARDS around the sun...foreclosures are continuing at record rates, we are getting sicker with the stresses our horrible economy has placed on us and with job losses we have less insurance coverage than ever before,(47 million uninsured), an angry man took a gun into a TOWN HALL MEETING, lies about our president are running rampant, more soldiers are being sent to Afghanistan, AIG is happily back in business, groceries and rents are as high as ever (shouldn't my rent go down??), rick people still fly in private jets along with politicians and company employees, so many contrary actions, so much ignorant rhetoric and consuming frustration.

We all need to take a deep breath, step back, and find some place in this mess to put our individual kind thoughts, thoughts for our neighbors, our elected officials who struggle with all the mess, and roll up our sleeves to fix SOMETHING. Help each other through these hard times, instead of fighting, yelling, and carry concealed guns. Join with neighbors to form a walking group or a discussion group---we just can't sit around waiting for the universe to sort it out.

If you are already involved with spreading peace and understanding (and maybe some food for your local food bank) then thank you, if you are not---then you really should find a way to stop the bleeding. Toss labels out the window, GOP, Dems, Libs, Socialists, Indies, black white green male female gay straight young old middle---we must all work to be one people in one nation (the world will come later) or we will all sink together. A truism. (The backwards planet? I'm lost about that one.)

Life Without MS, What Would You DO?

WEDNESDAY, Aug. 12 (HealthDay News) -- An experimental treatment that suppresses the immune system to put multiple sclerosis into remission completely reversed the disease in mice, Canadian scientists say.
In MS, the immune system attacks the central nervous system. The new treatment, called GIFT15, is composed of two proteins, GSM-CSF and interleukin-15, that are fused in the lab. Normally, the individual proteins act to stimulate the immune system, but when they're stuck together, the proteins suppress immune response, the researchers explained.
They do this by converting B-cells -- a type of white blood cell normally involved in immune response -- into immune suppressive cells.
"GIFT15 can take your normal, run-of-the-mill B-cells and convert them ... into these super-powerful B-regulatory cells," study team leader Dr. Jacques Galipeau, of the Jewish General Hospital Lady Davis Institute for Medical Research and McGill University in Montreal, said in a university news release.
He and his colleagues took normal B-cells from mice and sprinkled GIFT15 on the B-cells. "And when we gave them back intravenously to mice ill with multiple sclerosis, the disease went away," Galipeau said.
The treatment was fully effective with a single dose, and no significant side effects were seen in the mice, the researchers reported.
Their findings were published online Aug. 9 in Nature Medicine. Ah Canada!

Pump Iron and Be Strong with MS, Cancer, Backs...

Breast cancer survivors---stop ironing and pump some iron! Arm swelling from treatments can improve by lifting weights, contrary to previous advice. Fifty years ago patients with heart disease, bad backs, and multiple sclerosis were told to "take it easy," now there is evidence that weight lifting improves quality of life. I know it changed mine. Start slow, small weights, few reps, and watch your muscles grow---it is addicting!

Results are in Thursday's New England Journal of Medicine. Check with your doctor before starting a weight training program. (Do as I say, not as I do. hahahahahaha)

Falling Out of Love, What Might have Been? 1950s

My mother and father when they were still in love. 1940s, married at age 19, divorced at age 29, my mother never stopped loving him, never said a bad word about him. He lived down a dirt, country road from her. She wrote about him in her diary, their first kiss---the diary she gave to me. I don't understand how loving bonds are broken. It was odd and difficult to be a divorced woman with three children, ages 8, 7, and newly born, in 1957. She is a very courageous woman, though she would scoff at that description; she would say that she had no choice. She never remarried, never fell in love again. How very sad.

Forgiving in an Unforgiving World

Almost once a week I think about the story of Jesus on the cross saying, “Lord, why have you forsaken me?” I can’t understand why Jesus says this, since Jesus knew that God had it all planned out. How he could suddenly, after all his preachings, think that he had been forsaken?

Sometimes I feel like my entire life has revolved around my quest to prove that I can forgive that which is unforgivable. It seems I have been forgiving people since I was born. I quickly forgave my father for deserting my mother, brothers, and me, oh, I will never like him and my opinion of him will always be low; but, I don’t know the man or what his shoes were like, meaning I can’t walk a mile in them. Knowing things that happened after he left us, I would say he was not the happiest of men.

My mother I forgave as time passed, for not sticking up for me during the moments my brothers verbally abused me. I understood why she held back. The job of raising two sons alone was daunting for her. She felt bad that they had no father in their lives. “Boys will be boys,” was the motto in those days. She did the best she could and redeemed herself with the occasional brief lecture to each brother; those moments meant the world to me.

My aunt Vi, I forgave with each event of favoring one brother over the rest of us, I saw her deep need to do so, seemingly organic and out of her control, plus she sincerely had no sense that she was favoring him. I would search deeper for the “why” she treated him that way and am satisfied with all I discovered. My mother and aunt loved us all and did the best they could.

My brothers were harder to forgive. The younger one I forgave after much (years) contemplation of his life, walking in his shoes---he was not the favored child either, nor the cute baby girl, all he knew was his beloved daddy was around, baby came--Daddy left. I was an outlet for his anger. I get it. I forgave him.

The most difficult to forgive remained my oldest brother and two close friends. I am going to forgive them for forsaking me. That’s what they did---wrote me off and out of their lives. My brother I remove from my life now, from my thoughts (this was done many years ago) because I think that is the best relationship we can have. He would have to do what his first born will never do, ask to be forgiven for all the selfish acts they laid on others to clean up. I do not see that ever happening. They (oldest brother and his son) both have had too many chances to “make it right” and just blown them off like so much dirt on their sleeves.

My close friends, so hard for me to understand, yet when I walk in their shoes it becomes crystal clear. So I forgive the one who pretended to not even know me after slamming the proverbial door in my face and breaking my heart. She did what she needed to do. I may never understand the cruelty she did it with, the way she treated my feelings at each family gathering, gazing with love at the brother who treated me with such disdain, but I don’t really want to get inside the mind of a mass murderer either. I’ll leave it at forgiving.

My other dear friend, now she I have forgiven and had to do a do-over several times. Also she slammed the proverbial door one day and was gone. Forgetting me easier than a squirrel forgets where his nuts are buried. (tee hee) I struggled for years to forgive her. She gave me no thought and I was consumed with thoughts of her. We had been friends from a very young age, I shared my deepest thoughts, fears, concerns; I felt so safe around her, then suddenly and again without warning she dumped me for my older brother. More soul-searching was done over that broken relationship than any will ever be done again. Then (and yes, I hate saying this) I heard Dr. Phil say something that gave me clarity.

Dr. Phil said to an audience member once, “You don’t want her to ask for your forgiveness, you want her to acknowledge the pain she has made you feel. You want to know that she knows that she has hurt you deeply, right?”
I switched channels, but his words kept replaying in my mind. Did I feel that way? Had either, ANY of the people I needed to forgive ever let me know that they understood what I felt when they left me? I assumed, tears and letters asking, “Why?” would pretty much cover it; but, no, they never gave me that moment. I think I got one, “I didn’t know YOU felt so bad about it all.” (Implying: 1. Why WOULD/SHOULD I? 2. It was all on me. Only I can allow my own feelings to be hurt. MY problem.)

Yes, that need for acknowledgement has held me back. Well, I’m not going to be held back by that anymore. If they don’t get it by now, if they can’t say it by now, then they likely never will and waiting over 30 years for it is long enough.

I forgive them, unconditionally, and am moving on. I do this for Diane.

My lingering question had been, “What did I do wrong?” And so we go back to the question of Jesus asking God why he had forsaken him. Jesus, in the story, has done all God asked. Jesus dies, but later is rewarded. Scholars can debate the whole God/Jesus relationship with Dr. Phil, but I simply relate to that feeling of wanting to scream out, “WHY?”

I must accept that the why is left for dust, to be swept away, a thing of no importance anymore.

“More helpful than all wisdom is one draught of simple human pity that will not forsake us.” George Eliot

Unsung HERO of the Kennedy Family Dead at 88

Eunice Kennedy Shriver, the sister of President Kennedy and a champion of the disabled, died today, according to the Special Olympics. She was 88. Shriver was the fifth of nine children to Joseph and Rose Kennedy. She started the Special Olympics in her backyard in 1962. CNN-

Experts Weigh in on Obama Health Care, Grab the Scales!

Apparently the American Medical Association has weighed in on the president's new health care package....
The Allergists voted to scratch it, but the Dermatologists advised not to make any rash moves.
The Gastroenterologists had sort of a gut feeling about it, but the Neurologists thought the Administration had a lot of nerve.
The Obstetricians felt they were all laboring under a misconception. Ophthalmologists considered the idea shortsighted.
Pathologists yelled, "Over my dead body!" while the Pediatricians said, 'Oh, Grow up!'

The Psychiatrists thought the whole idea was madness, while the Radiologists could see right through it. Surgeons decided to wash their hands of the whole thing. The Internists thought it was a bitter pill to swallow, and the Plastic Surgeons said, "This puts a whole new face on the matter." The Podiatrists thought it was a step forward, but the Urologists were pissed off at the whole idea. The Anesthesiologists thought the whole idea was a gas, and the Cardiologists didn't have the heart to say no. In the end, the Proctologists won out, leaving the entire decision up to the assholes in Washington.

Health Care If You Are Under 75 Only

I haven't read the entire health care reform papers, but I do think it is placing too much of a price on the sickest of us. A local health alliance here in my city is drafting papers that sneak in the costing-out of care for the elderly. If you are over a certain age, for example, just live with your small cancer/tumor/gallstones/bad eyesight/etc., not worth the money. HOW dare we place a price on a human life? We don't hesitate to spend, spend, spend on sending a human to war and death. This nation better get its priorities straight. These documents should be spread far and wide to all Americans and we deserve time to read and understand every sentence, too much is taken out of context, mixed with what local associations are doing (as I did), and we know how fast rumors fly even without the Internet.

Here ya go, 615 pages, draft form:http://help.senate.gov/BAI09A84_xml.pdf

A New Life at 22

In a studio apt., across the street from the University of Michigan where we planned to finish our degrees. Our plans have never gotten off the ground.

Walk Like a Baby with MS at 52

When I waited outside while my girlfriend went to a free clinic for pregnant woman, her little boy stayed with me. There at the cement wall the little guy walked for the first time. I saw his first steps! It was bitter sweet because a parent should be the one to see and I couldn't yell for her to run out.

Thoughts of that moment 30+ years ago have been coming back to me lately, as I continue my own attempts to walk upright, on my own. I remember how he reached his small arms out and how he struggled to keep his balance. His brain had not had enough paths forged yet. That is where I see myself.

When I make any tiny advance, people around cheer, cry, clap. "Grab the camera!" For me it is, "Shut up! I'm concentrating. It is not a big deal yet." I remember how happy that little boy was when he walked, stood alone. I am that happy too, but still reserved. I WISH I could feel like he did, like being 16 and getting that key to independence---a driver's license. But like learning a new language at 4 VS 54, it is much harder, the brain is fuller and an MS brain is loaded with sink holes and road blocks.

One day. One day.

Wonder why CNN loses viewers to BLOGS?

From 11am Pacific Time to 4pm, CNN ran the same story about the plane/copter crash and under it ran over and over about Billy Mays' cocaine use (did THAT surprise anyone? seriously?) and a Kenyan wanting to make a super presidential baby gene by buying Chelsea Clinton for some cows. Over and over and over...good grief.

The Secret Life of Crows in Seattle

The University of Washington in Seattle is so proud of their research that shows crows can tell people apart from one another. They still tout it on their homepage. NPR adds a test, "Can you tell crows apart?" Well, as a bird lover, heck yes I can. Good grief. What, they are all black so you can't tell them apart---hello?? Now where have I heard that before? Maybe if you look past the color...oh, duh, that's what they are doing now. Ugh.

Anyway, I wanted to tell you about a band of crows I'm following. The birds in this upper-class part of Seattle are so...professional and civil, as opposed to the nasty crows from the drug-infested neighborhood I came from. (Drug users/dealers)

Every Tuesday a group of about 50 or more fly into a large evergreen tree, sit about 10-15 minutes to exchange information and then they fly off together in the same direction. There is a hierarchy and only one crow may sit on the highest branch. I will try and capture a pic of them taking off---it is awesome. This repeats about 3 times, then they are gone for a week.

When you are stuck in a chair, you have a lot of time to notice such things. I like that about my life. Many days were spent observing and relating to crows at our old apt., there were many trees outside our large windows.

In my previous neighborhood, the crows were real bullies, but here they are much kinder to smaller birds. More updates to come.

Woman You are Too FAT, Go STARVE to Beauty

Kelly Clarkson, American Idol winner, was airbrushed for this cover about self-confidence and body image esteem. The magazine admits it. GIMME A BREAK

Losing Touch While MS Moves On

My MS course is secondary progressive now. That is the most common course of the disease---start at relapsing/remitting and move to secondary progressive. I do not know benign MS or progressive MS, not personally, I can only speak directly about my life and how it went was like this: A pinkie finger on my left hand starts feeling no feeling, maybe just a nano-section of it, the smallest of the small.

Over time the finger will continue to become less feeling, then stop moving with the other fingers, then it will cease to feel at all. In the beginning the feeling would return, not anymore.
The petal-softness of my spouse's face is forever gone from me. I will never feel the sandman's dust in the corners of my eyes. After many years even the memory of these sensations will be erased. I will adapt.

Right now I am in a course of MS which is filled with great sadness over such losses and great shock over WHAT WAS THAT?! I look, I peer, I turn my head side to side, up and down...it is my own arm. My unfeeling finger had a moment of feeling and it scared me to death! Then I feel it again and again, cherishing it as if it were a new born baby I was touching. That is MY skin?

Then within the hour it is gone, not even long enough to form a memory, except that of the experience. And so it goes with secondary progressive. I deal with it as if it were a normal aging process, like diminishing taste or smell. We still eat, life goes on, we adapt. And always, always I think what aliens will experience when they find our planet. Soft rose petals may feel like sandpaper to them. (If they have that sense at all.) They may have no fingers and be unable to walk. They may have much in common with me, less with President Obama.

I'm just saying.

Latino Judge Woman Supreme

Judge Sotomayor Enhorabuena!!

Want to be 102? Can You Hear Me Now? Now?

Aunt Vi before she moved into a nursing home. Her pet bird is perched on her knee. I always remember her sitting crossed legged or in some way shifting her legs. She loved Hush Puppies, had a closet full of clothes, always looked like a million bucks. (She would laugh hysterically at that observation.) She is 102 now and is convinced that her mother is still alive. I think her mother's spirit is with her. Would YOU want to live to 102? Aunt Vi didn't, and she can't hear or see much...she never hears me at all. How does she spend her days? She was always a thinker, never stopped...I wonder where her mind goes...I hope she hears me call to her at night, telling her I love her.

Live to 102, Ten Easy Things To Do

1. Get a pet.

2. Make a friend.

3. Laugh.

4. Avoid packaged foods with more than 5 ingredients.

5. Learn about healthy eating.

6. Follow your passion.

7. Marry.

8. See your doctor each year.

9. Let out your feelings.

10. Keep moving.

Guinea Pig Explosion!

When I was in the 4th grade our class took turns taking home the class guinea pig for a week. We were so excited. Diane, however, skipped so much school that she missed her turn and never got to take the sit-on-your-shoulder and whisper-G Pig. I was heartbroken, so I did what any child would do: I begged Mom to let me have my own.

Off Mom and I trekked to the local K-Mart and bought a guinea pig, cage and all. Got home and learned it was a hamster. Hamster kept whole family awake all night running on its never-ending round treadmill. It had no interest in being held, petted or whispering sweet nothings in my ear. I think my brother let it loose and over the years there were mousters in our basement.

Guinea pigs, those selfish, lying creatures, neither from Guinea nor pigs. They have become stars lately, popping up in movies and TV, and probably homes across America, like Tribbles.

Want to know how to tell a male from a female? Sorry, this is not an X rated blog. And they may be rodents but they mate like rabbits, often and with any relative. I suggest you get just one for your child. They are darn cute when animated for movies though...if only life were a movie.

Anyone else have a guinea pig story?


Kingdom:
Animalia
Phylum:
Chordata
Class:
Mammalia
Order:
Rodentia
Suborder:
Hystricomorpha
Family:
Caviidae
Subfamily:
Caviinae
Genus:
Cavia
Species:
C. porcellus

Outstanding Blogs Receive Awards

I accept this award from Lisa at Brass and Ivory, the most outstanding MS blogger I know. You can read her blog at http://brassandivory.blogspot.com/ and she is also on Facebook and Twitter. I don't accept it because I feel I deserve another award, but because I am dying to enlarge it and see what is going on with Rocky.

I hope the following blogs will accept this award as well. You are truly deserving.

Palm Springs Savant http://www.rickrockhill.blogspot.com/ I know you don't take awards but I just could NOT resist thinking of you when I saw this one. hahahahaha Folks, PSS is a fantastic blog when you need a smile or a change of scenery!

Dam Diabetes http://damdiabetes.blogspot.com/ probably won't take the award either, but dang I love your dog!

http://epilepsy-paula.blogspot.com/ E. is for Epilepsy by Paula Apodaca, such a professional looking blog. Covers all you need to know about epilepsy from a genuine perspective.

A special thank you to Jen for her freak award.

Here is the Award

I guess it would help to add the award. Sorry, it's late...zzzzzz

Little Old Lady Takes on Presidents--Happy Birthday

Happy Birthday to a hero of mine, Helen Thomas, an honest to God REPORTER, member of the White House Press Corps., only one brave enough to keep doubting and asking former Pres. GW Bush, "Why? When? How? Where?" when so many others backed down. The little old lady in the front row who never stops asking the tough questions and won't settle for BS. I have admired her for so many years. They don't make 'em like Helen Thomas anymore.

Bill Clinton and Jesse Jackson Git Er Done!

Journalists Ling and Lee are free! Diplomacy DOES work.

Fearful Caregiver

I am not a cranky caregiver. I have been a caregiver on and off for my partner for 30 years. We joke that our first date was in an ER. She was a preemie and had horrible eczema as a baby and child (she also had a congenital esophageal condition, but we wouldn't learn about that for many years), the kind that requires drugs and hospitalizations, not fun for a child. Her schoolmates teased and beat her, calling her a leper. It was downhill from there.

We keep thinking "next year," but next year never comes, only more new conditions/illnesses, and my body joined in around 1982. How very romantic. Anyway, I came from a healthy family, a hardy stock; I never knew much about sick people, doctors or hospitals. Now I do.

And I knew NOTHING about care giving. Now I do. I am okay with it, all of it. I do not get cranky. That would be very hard since she has been through so much and she is never cranky. I just get so sad for her. Today a new health problem. The Dr, was seen yesterday and at 8am we start a powerful medicine. I am scared and I know she is too, but she forges ahead. She is the strongest, sweetest person I have ever met. It is hard to watch such good people suffer.

7:30, I better get ready. I hope she has no allergic reactions (she went into shock once after starting a new med., her body is super sensitive to meds and all her other organs can be affected so easily...) and this medicine gives her relief from the pain she has been having from a bowel obstruction. We must get her heart, ulcer, and thyroid medicines in now and her regular pain medicine. I am spent with worry and fear. Nobody in my childhood prepared me for this. I was taught fear of such events. I was taught to stay away from sick people. Ironic, eh?

When Bats and Moths Enter Your Home

"A BAT, " I shouted at my partner of 30 years. She sighed and headed for the broom.

"Where is it?" she sighed. (I seemed much more excited about our visitor than she! AND I am not the Anne Rice follower---I'm just sayin'.) Just then it flew across the room and landed on a tall window.

"That's a MOTH," says partner of thirty-long years, "not a bat," and she puts the broom away.

"KILL it I scream!" (Yes, I am the butch in the family. Ok, fine, I hear you, ok, I'm not perfect, I can't fix cars either or drink beers in a pick-up, so sue me!)

"Oh, stop it," she says as she heads back to whatever it is she does in the other end of the way too big apt. we live in. (HEY, people with disabilities need room for stuff, big ol' power chairs and such.) I kept my eye on that huge moth until the TV took my glance and the moth was gone.

Around 8pm I'm asking, "Where do you think it went?" "Probably died," she tells me. "But what if it flies up my bose during the night?!" "Turn the light off and go to sleep," she says.

The next morning while my walk-helper, Angie, is here, I spot the moth high on our window shades. I shout there's that bat! Get it, Angie!" Angie freaks momentarily as partner tells her it is just a moth. Then they go about capturing the moth. It is too high for my partner to reach. She is trying to catch it gently in her hands. Strange bird, this partner of mine, she catches and releases spiders too. So, Angie, saying she is afraid to touch it, tries grabbing it with a paper towel. Now I am feeling sorry for the little guy. I misjudged him and accused him falsely. I am full of shame. "Don't hurt him!" I scream to Angie.

Angie and partner release the moth to the freedom of our balcony. We fear it is hurt as the paper towel is covered in color or dust from his body, but he (or she?) flies off towards the lake, joining the other bugs, birds, and seaplanes that fill the clear Seattle sky.

Now, people, I can catch birds and even bats (to catch a bat just turn the lights on and when it sits somewhere brush it into a shoe box, using the box lid---birds, just cover them with a towel and scoop them up) but moths and butterflies have such delicate wings, or so it seems.

Such excitement is nature when it enters your home!

Do You See YOUR Story in the Media? LGBT Responsibility Index

The Latest at GLAAD
Media Release
Multimedia
GLAAD Releases Third Annual Network Responsibility Index - July 27, 2009GLAAD Statement on Guilty Verdict in Killing of Lateisha Green - July 17, 2009Best & Worst: National News
Best and Worst of National News: June 2009

Regain Your Balance

".. .beauty remains, even in misfortune. If you just look for it,you discover more and more happiness and regain your balance."~ Anne Frank

Knot Means Marriage Argument--What Makes a Happy Marriage?

So our latest fight, er, argument, was over the meaning of "knot." As we watched the nearby sail boats (my partner's father loved his sail boat, as did she), she noted that they were going very fast.



"How fast?" I politely asked.



"Oh, looks like 6 knots," says she, very lofty.



"How many miles per hour is a knot?" asks I, so inquisitively.



"Hmm, I'm not sure. I know dad used to drop something over the side and as it filled with water, each line was a knot. I think a knot is a...mile."



"Now, wait a minute, Darling , if that were the case the boat you have been watching would be a mile away and that lake expanse we can see is not a mile long." "What!?" "60 minutes in an hour, 360 in 6, you have been watching it for..." (I am dismissed as she leaves the balcony area---thank goodness becaus I don't know WHERE I was headed)



She becomes aggravated and struts down the hall in a huff, her leopard print slippers slamming the floor (very un-catlike), returning with our dictionary. "I'll look it up."



I smile calmly and ponder aloud the irony that we have two laptops and are looking something up in a book that cost us $2.50. She retorts, "This book didn't cost us ANYTHING. Your mother gave it to us." True, true, mother-dear did inscribe that book to us.



I soothingly acknowledge that she is missing the point of irony.



The dictionary says a nautical knot is 1.15 miles. "There!" declares my crazed partner of 30 long years.



"How stupid," I observe, " why make it so complicated? Why not call it a mile? Or two? Where did the word come from? Origin?"



Now, she sighs and continues reading that it also means the measurement unit of 47 inches of a log. (STOP THE PRESSES)

"47 inches?! Why not say 4 ft.? This is insane," I say ever so tenderly.

Anyhoo, it turned into questions about kilometers and English arrogance and looking it all up online only to find different figures. 30 DOG YEARS, now how many cat years is one dog year or parakeet year? Yes, readers, this is what happily married people argue about.

American Civil War Marriage Photo

My great great grandpa wearing his Union uniform, taking time off from the civil war to pose with his new wife. (Yep, my great great grandma! tee hee)