War is Hell

Memorial Day, remembering our dead soldiers. I lived through the Vietnam era and soldiers were frowned upon. I was young, but understood the thinking, "Just don't go. Don't join the killing machine. That is the only way to end the war. It is a bad war, fought for no good reason. Go to Canada."

As I have aged, I see how difficult a position soldiers are in. It is not their choice who or why to kill. They are ruthlessly trained in camps before they fight, trained to kill another human no matter what their heart or logic tells them. To head off, knowing you may die, believing you will die with purpose---that is an honorable thing that men have been doing for ages.

Except for the Civil War, Revolutionary War, and that nut-job Hitler, I am not so clear on our motives to kill. Seems like mostly we are helping other countries, which is fine, but I don't hear too many military people say, "I joined to save the future of____" fill in blank with some country. I wonder if we will ever stop fearing others.

Sports teams, starting at a young age, seem to begin the "get ready for a war" mentality. Special stars and stripes, captains, "God is on our side." drums, marches, flags/colors; and it starts with our boys and girls younger and younger. The Boy Scouts had it down.

I do appreciate people who went to war to make this a better world, even if that reality was only in their own minds. I appreciate the sacrifice. I love heroes. I'm just not sold that every grave in Arlington holds a hero. Some were forced to serve, some killed innocents, some deserted, some raped their own comrades---we just don't know. War is Hell. That is still true. And one day we must stop war.

Here is part of a poem the son of a soldier recently found that his father had written:
"I shot a man yesterday
And much to my surprise
A part of me died with Him
When Death came to close His eyes."

After soldiers come home, our government breaks its promise to treat them well. I have heard too many horror stories about VA hospitals. They are bonded with other military personnel forever, because only they can keep their reality alive. No matter what they did, they are family. Sometimes it seems that is all they have. And for some, maybe that is what they needed at 18. Maybe that is enough when the smoke clears. But for their children, widows, widowers, and all the innocent dead "collareral damage" is that really enough? War is Hell.

MS Just Like a Tatoo. I Love This Video

When National MS Society Had a Good Ad

MS Word of the Day: Neutrophil

A neutrophil is a type of white blood cell that attacks bacterial infections in our bodies. It is so full of killer ingredients that it can make a wide sweep and in MS, these otherwise helpful cells may be attacking our nerve covers (myelin). They live only a few hours or days, and usually do no harm. Maybe in MS they live too long for some reason. Stress can bring on the neutrophils, even cigarette smoking and obesity. Just another possible piece of the MS puzzle.
(And you thought it was a super hero named Phil!)

Why Dogs Have a Short Life Span

A Dog's Purpose? (from a 6-year-old). I don't usually forward emails, but this one is so truthful. -Diane

Being a veterinarian, I had been called to examine a ten-year-old Irish Wolfhound named Belker. The dog's owners, Ron, his wife Lisa, and their little boy Shane, were all very attached to Belker, and they were hoping for a miracle.I examined Belker and found he was dying of cancer. I told the family we couldn't do anything for Belker, and offered to perform the euthanasia procedure for the old dog in their homeAs we made arrangements, Ron and Lisa told me they thought it would be good for six-year-old Shane to observe the procedure. They felt as though Shane might learn something from the experience.The next day, I felt the familiar catch in my throat as Belker’s family surrounded him. Shane seemed so calm, petting the old dog for the last time, that I wondered if he understood what was going on. Within a few minutes, Belker slipped peacefully away.The little boy seemed to accept Belker's transition without any difficulty or confusion. We sat together for a while after Belker's Death, wondering aloud about the sad fact that animal lives are shorter than human lives. Shane, who had been listening quietly, piped up,

''I know why.''

Startled, we all turned to him. What came out of his mouth next stunned me. I'd never heard a more comforting explanation. It has changed the way I try and live. He said, ''People are born so that they can learn how to live a good life -- like loving everybody all the time and being nice, right?'' The Six-year-old continued,''Well, dogs already know how to do that, so they don't have to stay as long.''

Live simply.Love generously.Care deeply.Speak kindly.Remember, if a dog was the teacher you would learn things like: When loved ones come home, always run to greet them. Never pass up the opportunity to go for a joyride. Allow the experience of fresh air and the wind in your face to be pure Ecstasy. Take naps. Stretch before rising. Run, romp, and play daily. Thrive on attention and let people touch you. Avoid biting when a simple growl will do. On warm days, stop to lie on your back on the grass. On hot days, drink lots of water and lie under a shady tree. When you're happy, dance around and wag your entire body. Delight in the simple joy of a long walk. Be loyal. Never pretend to be something you're not. If what you want lies buried, dig until you find it. When someone is having a bad day, be silent, sit close by, and nuzzle them gently. ENJOY EVERY MOMENT OF EVERY DAY!

Gun Shot in the Night at Retirement Apartment

So, it is 2AM, and I am sleeping soundly. Well, actually I am a dog-sleeper, a guard dog sleeper. Any slight noise and I come to full alert status, ready to do battle. (Since getting off Zanaflex anyway) And the sound of a gun shot awakens me. It sounds like it came through our kitchen window, since I hear the shot and then the glass breaking.

I stay still. Listening with my dog ears. (Well, actually, dog-bird ears, as birds hear the high pitched frequency quite nicely, while dogs cringe in pain.) No car speeding away, no human voices, nothing. Then a thud of sorts from above. Hmmm, did the lady upstairs fall? Was she shot? Was it not a gun shot but something else? Was it HER apt. and not ours? I get into my power chair and set off to take inventory of any damage to kitchen. But I must not turn on lights yet, just in case a shooter is waiting, watching.

Slowly I move toward the kitchen area from the back side (our apt is HUGE...I'm guessing at least 2,000 sq ft) (Is that possible? Hmmm, anyway, back to story.), and I feel no cold breeze from a hole in window. Good sign. I turn on small light above sink. (reached by switch on wall a good distance from window/balcony door) No glass on floor or table. Window looks fine. It wasn't our apt. Whew. I turn off the light and proceed slowly to look outside.

Nothing unusual, quiet as a dead gorilla. Now I am hearing more soft sounds upstairs. I go back to my sanctuary. (My lift-chair) Someone has their TV on now. They must have heard the shot too, the breaking glass; I listen for sirens and fall asleep.

The next morning my 6AM "sharp" caregiver arrives and she is telling me something from the kitchen. The minor language barriers prevents me from getting the gist of what she is saying. I had told her upon her arrival about the strange gun shot, breaking glass, thud above sounds; she told me the person upstairs often falls. When it is clear I am not understanding what she is asking (or telling) me, she steps around holding one of the expensive bottles of water I had purchased for my Indiana cousin's visit a week ago. (Neither he nor his wife took a sip. Hey, you can't win 'em all. My visiting blogger buddies will get to partake.)

In fact, it was half a bottle and half a tower of ice. Someone (and no one accepts blame, though *I* can not even reach the freezer!) had put the bottle of water in the freezer and it exploded. Mystery solved. Quickly, I did what any sensible person would do and I jotted that down for a mystery book. Just like the melted ice cubes in Encyclopedia Brown being the un-found murder weapon, that would make a great murder weapon. It would appear the murderer hit the deceased with a bottle of water, but there would be no prints....OR, it could have been accidental, the glass cutting their wrist or throat as it exploded, the person obviously fell first and glass broke. I, er, the murder could alibi in a million ways...yes, I shall keep this for future reference,

Such is the exciting life of retirement years. (HEY! In my old neighborhood gun shots were a nightly occurrence and no big deal. But NOW I have "moved up to the east side," where apparently only frozen glass water-bottles shoot out in the night.)

MS Word of the Day: Oligodendrocyte

Among the many reasons that MS is such a complicated disease for us to understand there are all the complicated words which go along with it. First of course, there is that the name itself, multiple sclerosis. Then comes neurologist, and now for me, the very important word - - oligodendrocytes.

Oligodendrocytes are the cells that make myelin, which, we all know by now, is the nerve blanket that is destroyed by MS. Research shows us that although the ability to repair the damaged myelin exists within us--for some reason it fails

So many big words, even the scientists get fed up and start abbreviating, thereby giving our already taxed MS brains a bunch of meaningless letters to remember and get familiar with. As my Jewish friends would say, "OY VEY!" OPCs: oligodendrocyte precursor cells, better known to me as my salvation. I am secondary progressive and I need repair. Solumedrol no longer paves the way for normal myelin cell repair.

OPCs are immature oligodendrocytes and when they are captured and put into non-myelin making mice, it resulted in almost complete restoration of their previously lost neurological function. (Yes, if only we were mice. I wonder what happened to that mouse with the human ear...back to MS.)

Dr. Steven A. Goldman, MD, PhD (University of Rochester Medical Center) is one of the leaders of cell transplants to rebuild myelin. But, he is just one, and many more are tackling this problem. Nice to have friends in Lab Places. All we have to do now is figure out how to turn those babies on!

Brittany Murphy's Husband Dead

Dead from heart attack (same as Brittany) at age 39...life is strange that way.

Lost Lessons Learned

The TV show Lost will go down in TV history along side the Dallas dream episode. It was a paint by number inside a 3,600 pieces puzzle box.

1. Dogs don't go to Heaven.

2. JJ Abrams had no exit strategy whatsoever and he and all his writers could not come up with one.

3. Lesbians don't go to Heaven. (The out actress who was fired after getting a DUI was M.I.A., but doing fine in Avatar.)

4. They all died in the first episode plane crash. Period.

5. All they hype was just hype---NOTHING WAS ANSWERED.

6.All of you who never watched or stopped watching, were right!

Letter From Michael Steele, RNC, Arrives at My Apt.

My partner got a letter from Michael Steele the other day:

Dear Karenlee,

Strengthening our party for the 2010 elections is going to take a massive grassroots effort of all across America. That is why have authorized the Census to be conducted up every Congressional District in the country.

Enclosed is your official 2010 congressional district census registered code number_____in your name as a representative of your area.

Your registered Census is is one of a select few being mailed into Washington's 7th Congressional District.

Because of you're high level of political involvement and steadfast commitment to the Republican Party, your personal input on the questions presented in your Census Document is critical to our Party's future. (hahahahahaha What have THEY been smoking?!)

Your completing and returning this Census today is central to our Party's ability to devise a winning Republican strategy in your area - especially as we take on the Democrats in the fight for the future of our nation. It is absolutely critical that we act immediately to build a state-of-the- art grassroots organization in every district around the country.

More blah blah blah and do your best to get it back to me at RNC headquarters by May 28th.
(I paraphrase here: and send money.)

I know things are tough financially right now, but I'm making a special appeal for your financial help because we need to make sure we have the funds to fight back against Barack Obama's, Nancy Pelosi's Harry Reid's liberal agenda for America.

Barack Obama was barely in the White House a month when he dropped all pretense of "hope" and "change" and laid bare his real agenda of massive tax increases, government run Health Care, amnesty for illegal aliens, and bigger, more intrusive government. Today the Democrats' disastrous agenda is becoming a reality for all Americans and we must stop them.

Your responses when tallied with other respondents in the Seattle area will help our Republican candidates explain in detail that we're the party best equipped to guide America's economy to prosperity and to empower the people of this nation - not the government.

The Democrats are advancing an agenda that is against so many of the noble principles this great country was founded upon - unobtrusive government and individual liberty. The only way we can unlock their iron grip on the Federal Government is to do everything within our power to elect Republicans all across the country this November and break their majorities in Congress.

It continues with same blah blah and ends with: please let me hear from you soon.
Sincerely, Michael Steele Chairman, Republican National Committee

P.S. Karenlee, to win in November, the Republican party was be better organized than the Democrats every step of the way. Today, I am counting on your help to ensure we meet that goal. Please don't let us down.

Now an example of the questions on this "Census"
"Do you think things in this country are generally going in the wrong direction, or do you feel things are starting to improve?" Here are the choices of three boxes to check:" 1.)Wrong Direction 2.) Starting too Improve 3.) Unsure" What? Is something missing? Like: I think this country is going in the correct direction.

Each question was worded in this biased fashion. So...this is their strategy? Tell people that their survey says the majority of Americans surveyed hate Obama and all he is doing. The Democrats are ruining our country. Won't that make a nice headline. I doubt it will mention how the poll was purposely meant to deceive readers by emphasizing that it was somehow connected with the 2010 census., and make then feel that they HAD to turn in in. Or that the questions were worded in such a way that any answer made Democrats look bad.

My partner swiftly tossed it in the recycle bin and I swiftly got it out and answered the questions (surprisingly my answers did not fit in the boxes.), even though I know they will be swiftly misplaced in the "5% error factor")

RNC, Mike, you need to work on your strategy---mailing surveys with paid for return envelopes to Liberal Democrats is a waste of your money you are soliciting.

Teaching Without Facts: The Texas Ranger Cover-Up

Texas has taken the "we'll do what we damn please" page from Arizona's "Teaching Our Children Right From Wrong in the U.S.A." book.

And I thought Arizona would be the "dumbest decision" award winner this year. TEXAS has far surpassed it. Texas, and by "Texas" I mean the conservative "I didn't come from no monkey" school board members, is rewriting history to sugarcoat the bad things we Americans have done.

For example: That ugly little event where we captured Africans like dogs, chained them, beat them, took them by force from their homes and made them our slaves? Texas children will read that this was "The Atlantic Triangular Trade." By golly, that DOES sound nicer. I don't hear any screams at all. Why not say we gave unemployed Africans jobs picking cotton and wiping our rears? It was the "Lift Up Period" in our history.

Silly me, and here I thought schools were supposed to give FACTS to our children and make them think. I sure hope the biased history books will have their own chapter, so that our children will see how some adults put their own agendas above educating them with facts. Is Mel Gibson on that board? Will the holocaust be eliminated? Darwin who? Texas Rangers killed how many thousands of Mexicans and Native Americans (who were trying to help the slaughtering of Mexican men, women, and children)? I guess none of that happened. What do historians know anyway? (Why do we even give DEGREES in History? Seems a waste, since history seems to be always changing based on what a school board might decide.)

Well, if parents are not standing up against this history text book rewrite---shame on them. Oh, and passing admission exams for our best universities, good luck with that. Repeating the errors of American silence, good luck to US on that.

Catch-22 of Becoming a U.S. Citizen

My state of Washington is boycotting Arizona. Okay...seriously? Well, got me thinking---I have no papers. If the FBI busts in my retirement community home, where will I hide? My partner has a degree from NYU on the wall, a Washington State ID, the NY Times, she is all papered up; but me? My father is dead. My mother would say, "I've never seen her before in my life." WAIT! The FBfreakin'I has my fingerprints and the National Geographic has my DNA! But, that is not "papers."

A person I met asked me not too long ago, how she could get her papers. I got on the USA/gov site and told her. Catch 22, she doesn't speak or understand English too well, and there is THE TEST. I doubt 80% of Americans could answer all those questions, and she doesn't know English yet. Do you think that is why so many people don't become "legal?"

I think anyone who hires an illegal immigrant should have to pay for the education and oversee the passing of THE TEST. I would even make those "employers" take the test and if they fail---BAZINGA!

We treat (let us get real, we are talking about Mexicans) these "illegals" like dirt, pay them small wages, threaten and scare them---telling them we will take their children...what have we become? I did not sign up for this. Did you?

Why all the money and attention devoted to immigrants from Mexico and not the terrorists who continue to attack us? Can't Mexico be our good neighbor like Canada is? What am I missing here?

Flower Photo Courtesy of an Illegal

The Basics of Denial. Don't Go There.

Martin McKee, an epidemiologist at the London School of Hygiene and Tropical Medicine who also studies denial, has identified six tactics that all denialist movements use. "I'm not suggesting there is a manual somewhere, but one can see these elements, to varying degrees, in many settings," he says (The European Journal of Public Health, vol 19, p 2).
1. Allege that there's a conspiracy. Claim that scientific consensus has arisen through collusion rather than the accumulation of evidence.
2. Use fake experts to support your story. "Denial always starts with a cadre of pseudo-experts with some credentials that create a facade of credibility," says Seth Kalichman of the University of Connecticut.
3. Cherry-pick the evidence: trumpet whatever appears to support your case and ignore or rubbish the rest. Carry on trotting out supportive evidence even after it has been discredited.
4. Create impossible standards for your opponents. Claim that the existing evidence is not good enough and demand more. If your opponent comes up with evidence you have demanded, move the goalposts.
5. Use logical fallacies. Hitler opposed smoking, so anti-smoking measures are Nazi. Deliberately misrepresent the scientific consensus and then knock down your straw man.
6. Manufacture doubt. Falsely portray scientists as so divided that basing policy on their advice would be premature. Insist "both sides" must be heard and cry censorship when "dissenting" arguments or experts are rejected.

I find this so true in those who hold up political or religious views as if facts were simply feelings.
Too many people find their greatest comfort in denial and are unable to move onward to a better place.

Aspirin Fights Multiple Sclerosis

My mother always kept a bottle of aspirin around. Whenever anyone had a "don't feel good" moment, she grabbed an aspirin. When I was in my early thirties, I was having problems walking home from the bus stop, a good 10 block stroll; so I took an aspirin. Yes, I began walking just fine. From then, and now, aspirin is my friend. My friend who helps me fight MS.

Now, I debated how technical to get into the make-up of aspirin. It is very complex. Its history in the U.S.A and other countries is also complex. Such a simple drug, but with so much goin' on.
Let me just say, it reduces inflammation and a lot more. The degree to which aspirin can help the human body is an ongoing investigation. If I were a university student today, I would be researching aspirin.

Not every body can handle aspirin, so talk to your doctor before ever jumping into a bottle. (Not that my mother or I ever spoke to a doctor about it, but do as I say not as I do, yo?) But, for me, it works wonders. Any time I take it I feel better. I feel better even when I didn't know there was better to be had. Any side effect from Copaxone (bumps, rash, pain)--I took aspirin. My optic neuritis kicked in---aspirin. MS migraine---aspirin. Vision gets blind areas---aspirin. (and within 15 minutes max, all A-OK) Hot summer day MS-slow down---aspirin. After Solumedrol wipes me out---aspirin.

In the beginning, before my MS diagnosis, aspirin got me through every MS symptom I had. (If I hadn't gone in to see my doctor about my knee acting up and bothering my basketball game, I don't know WHEN I would have been diagnosed. Strange happenings, but aspirin made me feel ok enough to put the possibility of a brain tumor on the back burner.)

In the future, I believe research will show that there are many different kinds of MS, affecting different body chemistry uniquely and we will learn how unique each of us is. For now, we struggle along with the doctors and scientists trying to piece together that MS puzzle.

Aspirin is a big piece of MY MS puzzle. Excuse me, off to get a glass of water for me and my MS friend.

American Idol Is Mostly a Pain

Last night I called, many times, my vote for that Boxer Socks Blonde on American Idol. I have never voted for anyone on that show before, I blame my MS. Anyway, I thought the dude who sang "Simple Man" had a better showing last night, but Boxerwhatever has been the best singer overall, show after show. (I was determined to actually watch it this year, though clearly the names have not stuck with me, except: Big Mike. WHO, in my opinion, was just singing the wrong songs for his voice.) Anyhoo, I think at this point the tall, long-haired blond guy, will be voted out next and then it doesn't matter who wins because the runners-up often get just as lucrative careers and put out great songs.

I don't think I'll watch AI again, so many horrible renditions of great songs, it pained me to listen.

Sen. Patty Murray and Oil Spills Bills

My Senator from Washington State, Patty Murray, is fighting to end the cap that oil companies are allowed after they cause a huge spill. It is about time. Those oil companies are so unscrupulous and greedy. We all should let our politicians know that we are done cleaning up THEIR mess. We are not maids in their mansions. The environment damage from the recent Gulf Spill of 2010 may last a lifetime. If we don't crack down with a Democratic president in office, then we never will.

Style in the Genes! Hat From 1910 ish

Remember my cousin in the earlier post who looked like a movie star? Well, this is her mother at a very young age, holding my Aunt Bea. (Bea was my mom's only sister. Aunt Vi is my GREAT-aunt and Hazel's younger sister.) Look at that hat!

First Time I Heard "Multiple Sclerosis"

The first time I heard the words multiple sclerosis was in the early 1960s. The TV was running an ad over and over: "...the crippling disease of young adults." A picture of a person in a wheelchair accompanied it. There were collection cans at stores. I got it mixed up with the Jerry Lewis telethon. I was not the only one, to this day I am asked, "Is that Jerry's Kids?"

"Cancer" is so much easier to say than muscular dystrophy or multiple sclerosis. (Though in the '60s there were no ads for cancer, in fact, it was a whispered word.)

The next time I would heard the words multiple sclerosis was the day I was diagnosed in 1990. It took me some time to pronounce my disease correctly. Thank goodness, we can say, "MS."

But those ads from 1960s never left my mind. Funny how life can circle around on you.

Doctors Make the Most Money

Medical professions, including oral surgeons and orthodontists, dominated the government's latest list of the top-paying jobs in America. The Bureau of Labor Statistics recently released its summary of American jobs and salaries in 2009.

So, please, Doctors, stop your belly-achin' and whining. You make the rest of us sick.

Is Your Dog at Risk for a Heart Attack?

DNA Kit Kept from Walgreen's but NOT From Me

I have decided to get my DNA health test. The FDA stopped Walgreen's from selling the kit for $20 (God forbid a patient have info about themselves that a doctor doesn't! The AMA must be furious!) so I ordered mine yesterday from the company that was going to sell them to Walgreen's. My mom, Aunt Vi, I want to get all the DNA I can before they are gone. I'm so excited.

MS Neurologist, Physiatrist, and Dwindle Time?

I get it. I do. You were diagnosed with MS and you are scared. You don't want to "end up in a wheelchair." (There are worse things.) You were just diagnosed in the last couple of years, maybe it was over 10 and you were doing just fine, thank you, but now your MS is acting up and you are searching for comfort, answers, help. Really, I feel for you. I've been there. Before the Internet, before cell phones and email, I've been there. My blog is meant to help you, comfort you, maybe answer a few questions. I also hope to show anyone who stops by that having MS doesn't define who you are. Life goes on.

That said, if you have been following my blog (and of course you have, AND of course you remember every story I've told...hahaha) then you know I have, after 20 years post-DX, claimed the title of secondary progressive MS. My neurologist, a few years ago, told me if I didn't go on Novantrone, that I would, "dwindle." (such a cute word, I still say I'm going to name my next dog that, "Here, Dwindle!")

My plan is to live my life with the support of a team of doctors. The draft seems never ending. I DO have my team captain, which is huge and I thank my lucky self-luminous gaseous spheroidal celestial bodies of great mass which produce energy by means of nuclear fusion reactions (stars) every day! But doctors retire, move away, my MS doctor jumped ship in 2004 and I my search has been ongoing for a replacement.

Now, I don't have to tell you that your MS Doc will be one of the most valuable relationships you can have., whether you were recently DX or were DX 30 years ago. Depending on your age, you will probably die with MS. (Not FROM it, but WITH it.) Yes, I said it and I'm sorry if no one else has told you that. But please, this is not necessarily a bad thing. IF you get on with life. Your MS Dr. should be the one to help you do that. Don't settle for anything less.

Sooo, taking my own advice, and I must since I live by "I never expect more of anyone than I do of myself," I have gone through some, er, how can I say this in a nice way, dumb ass neurologists. The most recent one was on my short list until she deserted me in an ICU, HER hospital's ICU, for days, while I was dealing with some virus or infection (one of the complications that CAN kill you courtesy of MS ) and the first time I saw her after my adventure to Hell and back, she had NO idea that I had been in HER ICU. (Had she returned my calls, messages or emails....) That Dr. fell off the list. Seattle is a big city, but how many neurologists can I dump before they see Diane coming and run the other way? (And FYI, doctors are notorious gossips!)

Sooo, my yearly appt. was approaching, I basically endure them, shove plastic brains under my shirt or act like a fool to try and get some laughs out of a boring and unnecessary meeting. I mean, I'm SPMS, there are no BIG PHARMA drugs for me, no surgeries or magic exercises. I have my chair, my walkers and canes, all the material needs are met. Only myelin repair can help me now---by way of a doctor appointment. You dig?

Now I was called out on this, I mean it was a breaking! (Yes, I'm showing my age, but at least I'm in the 90s now!) A woman, my age, DX 20 years like me, went ballistic when, after she told me I should go to her gay/MS support group, I said (and I SWEAR this was all I said!), "Why?"
Amazing how many times that small word has gotten me in such big trouble! (And, no, I am NEVER going to stop asking.)

This woman told me she wanted every new MS drug that came out (I couldn't believe she actually said it.) and "I am not going to quit fighting!" Game on. To which I replied with indignity, "You think I don't fight?" (My voice was only slightly raised.) After that she backed off, but became cold and obviously steaming, which led to a total melt-down against the passing by maintenance man and me. It was ugly. He and I were stunned, she stormed off, returned after about 15 minutes and apologized, he and I were like, "No problem. Difficult times right after you move in here, blah blah," and she split again in her scooter. He and I never spoke of it again.
But I hear YOU, some of my readers, yelling the same thing at me, thinking the same thing when I rant about the snake-oil drug dealers of MS Land. But, hear this: I do NOT discount you.
I don't have answers, mostly my own piecing together of MS information, I am fascinated by the whole journey we are on together. There are so many unknowns, so many possibilities, and this is why I consider MS an adventure. While I feel confident in my decisions, I could be completely wrong---I simply require proof that I am wrong.

Still reading? Bless you. Back to the point of this War and Peace with MS: My neurologist had been trying to (and this is all my perception) dump me off to another in a long line of worthless and border-insane physiatrists (a physiatrist: they are MDs who specialize in rehab and figuring out what your MS body could use help with. Some people with MS only have these as their MS Doc and they THINK they are neurologists---Nope, just MDs...if I had a dime for every person with MS I had to explain that to, well, I would be HALF as rich as the dimes from all those who never believed me!) , so I had no intention of seeing another one.

Two days, then again one day before my MS yearly chit-chat, I called to confirm the time. (A must do since my van ride there depends on accuracy.) Both calls confirmed A-OK. I had set the appt. TWO MONTHS ago. 4pm the day before appt. I get a call changing my time by TWO HOURS and MY DOCTOR! "Dr. XXX is unavailable." (sure) I argued the time and we debated the time until I got my same time back but with new Dr.; I later called back to confirm it was a neurologist and how to spell the name. Was this fate? Maybe this would be my NEW team member and I could dump Dr. XXX!! Drat! I wanted to dump her first. She never liked me after I called her out about taking money from a drug company to speak about their drug. (Silly, girl. I assured her not to feel bad, "You all do it."

Morning of appt., oh, remember how DR. XXX wasn't available? I called right back that day and after saying I was a new patient, yep, she was available. They also had NO record of me ever having an appt. with Dr. XXX---hahahaha, this was planned far in advance. ANYHOO, I start thinking about the name of the new neurologist and yep, it was that physiatrist who Dr. XXX had been pushing. You know what I hate? Lies. Attempts to manipulate me because I am deemed too dumb, or unable to fight back. BECAUSE---if they do it to me, then they will do it to my 103 year old aunt in a heartbeat. You know?

Okay, I choose to make this a good day, a good experience---I am in Fate's hands.

After a mix-up of my records (they had no idea what MEDICINES I was on! Good grief. "I am just a Temp." Fair enough. I finally got to meet Dr. ZZ "Everyone loves Dr. ZZ" That is another way of saying, "If YOU don't like her then something is wrong with you." Hold onto your Fez, I WUV HER! I have a new team member! Hooray! Now let me tell you why.

She was honest. She did not hesitate, to find the legally correct answers. She had (sit down) READ MY REPORTS! She even brought up my radial nerve palsy from 2005! She could finish my sentences, CORRECTLY. She agreed with me about all the hottest new and improved MS blugs. er, drugs. She looked me in the eye. Oh, man, my dream come true! She GETS it. And after I told her how I knew what Dr. XXX was doing and why (Because neurologists diagnose MS, they get the MRIs and try drugs on you; you MUST start there, but where I am now---all that is done. Unless a cure or myelin repair comes along, a neurologist has better things to do. That is the reality.) and Dr ZZ agreed with me and apologized that it wasn't handled better.
Also, she is so damn CUTE! She is disarming, and I am not easily disarmed. ("I will be bullet proof..." a song on the charts.)

Sigh. I was so relieved. Then! The best yet! I described my exercise program, my walking program, my goals, and she said and I quote, "You are doing all the right things." She was "impressed" with how well I was doing after 20yrs DX (and actually 40yrs my first symptoms began) and YEA! I am so empowered now and full speed ahead! No more quilt, no more doubts. I'm living with MS and moving forward.

CCSVI Rally in Canada and Why Have Surgeries Stoppped?

Check out Carole's MS Blog http://carolemsblog.blogspot.com/ for an interesting on the spot report of the CCSVI protests in Canada. Why would the MS Society there buy the web domain www.ccsvi.ca and why has the North American medical community stopped doing the surgery?

McDreamy and the Variety of Sexual Healing

"What would you like with your fries?" OK, what is it about this guy? Yeah, yeah, the hair is dreamy. But what is it?

Do you buy the "love at first sight?" If so, what sight does it for ya? Personally, if men were my thing, I have a bias. I don't feel any sexuality in short men. That's right, I said it. 5"11 is as low as my it-factor can go, and 6'3 is about just right. Over 6'6 is too tall. Now WHERE do I get this bias from?

Women, blondes, blue eyes or green, over 5'4 is best. Oh sure, it is all the person, the soul, nothing else would matter if I fell in love---but we are discussing the it factor here. You know, sexual healing, chemistry, electricity 10,000 Volts!

So, what gets YOU? Me? It is all in the speech. "Big words" melt me into a puddle of mush. Then, the eyes, that window to the brain, er, soul---if I can see depth there, a little mystery and I'm smitten like a kitten with catnip.

Facing FaceBook and A Broken Winged Bird

Everybody (I'm guessing) has that one teacher who changed their life. For me it was Mr. Brodie, a High School Drama class teacher and speech team coach. He was the first adult to seemed to respect me, and who thought I had talent in something my dreams were made of.

I placed him on a pedestal though, and that was my youthful mistake. His faults were invisible to me. I was so thankful for his attention that nothing else mattered. He invited me to his home. He made the glass bird for me. He made sure I graduated even though I was short a gym credit. He sat next to me in the night during long, dark sky bus rides from speech meets across Indiana, whispering and singing in my ear with his arm around me.

Looking back with adult eyes, his behaviour was inappropriate, even just by the fact that he was favoring me. When one student stood up to him and took sides against another girl who was a good friend of hers, he dumped the girl who had been his favorite. And when I called him on it, he threw a tantrum like a child. We never spoke again for years. We met once after I had moved away from Indiana, and we wrote t each other briefly until he simply stopped. Not coincidentally, in my opinion, because I had mentioned the student he had shunned was living in Seattle now and I hoped to meet with her.

Now he is on Facebook and I am struck by his complete avoidance of our break-up or break-off. Another reason I am going to end my association with Facebook. Nobody had changed. I did get to connect again with a nice cousin, but, the rest is too fake for me. It feels less fake with my blog friends I only have known via blogs.

People don't change, do they? I haven't found that to be true---that they change. If they didn't get me then, they don't get me now. Salt on the wound. Time to throw the glass bird away.

**Brodie was not his real name***

Lena Horne Dead at 92. American Jazz Hero

Lena Horne in the 1940s could entertain white America, but was not invited to the after-parties. In her own words she has spoken over the years of her light skin color being the only reason white America accepted the African American with a talent for acting and a gift of song.

Her 1981 one-woman Broadway show, "Lena Horne: The Lady and Her Music," won a special Tony Award. The 64 year old Lena sang two renditions — one straight and the other gut-wrenching — of "Stormy Weather" to give audiences a glimpse of the spiritual odyssey of her five-decade career.

Nursing Home Boredom and Touwen

Mom didn't really get the whole poem reading. She asked 3 different times, "Is this Mother's Day?" I ended the call with, "I love you, Mom." She replied, "okay"

What I will remember most is how rude the staff was at her nursing home. I was on phone 30 minutes, less than 5 with my mother. They at first lied to me, saying she was involved in the day's special activities, when I requested she be removed to speak to her only daughter for a moment, suddenly she was found in her room. I had words to say to the girl ("staff") on the phone, but she was fast to drop me onto the recorded, "This is the best place for your senior parents..." and I listened to that so much I think I have it memorized.

"What will you do with the rest of the day, Mom?"
"Oh, sit, eat, go to bed. That is what I do here." Said matter-of-factly, with just a hint of sadness.

And so it goes in nursing homes across America. We better wake up to the problems like low staff, before we are the ones sitting alone...just waiting. I believe there is a better way and we must find it now. Death and dying with dignity, even a sense of joy and peace is within our grasp. There is much work to be done.

Gift for Mother with Alzheimer's from Beyond the Grave

While sorting through the many photos and letters that my great aunt and mother had mailed to me over the years, I came across one Mom sent me long ago, but I read it for the first time today. Mom had a yellow post it note on the torn, yellowed from age, pages: "This is in my mother's handwriting. Very old. She was born in 1887 and died in 1943."

There are three pages. One is a charming Christmas poem. One is about getting married and cleaning. One made me cry and is most fitting for Mother's Day. Words from one generation mother to her daughter and then on to the next generation daughter. I will call my mother today and read it to her, maybe she will understand, maybe not. Maybe I will have to tell her that her mother is dead. Today her mother will speak to her with love, through me. It is our gift to her, while she lives with Alzheimer's---I hope it makes her feel joy.

When I was just 3, my mother said this prayer with me every night before we went to bed: "Now I lay me down to sleep. I pray the lord my soul to keep. If I should die before I wake, I pray the lord my soul to take."

By Edith Kinerk

"Now I Lay Me"

"Now I lay me" Repeat it darling,

"Lay me," lisped the tiny lips,

Oh my daughter, kneeling, bending,
O'er the folded fingertips.
Down to sleep. "To sleep," she murmured.
And that curly head bent low,
"I pray the Lord" the sound came faintly,
Faintly still, "My soul to keep,"
Then the tired head fairly nodded,
And my child was fast asleep.
But the dewey eyes half opened,
As I pressed her to my breast,
And the dear voice softly whispered,
"Momma, God knows all the rest,"

Mother and Daughter All Her Life

Mom always said, "A son is a son 'till he takes him a wife. But your daughter is your daughter all of her life." Here we are having coffee in Seattle around 1989.

Licking Icing from Mixer in 1949

This is Ivah, my great-aunt's longtime companion, with my oldest brother. Ivah bought a house with Aunt Vi and Ivah's mom. Three women who all loved to cook and bake! The house was never without cookies (We ate the dough raw and lived to tell about it, of course...it was all fresh and homemade.), pies, and cakes.

Licking the new fangeld electric mixer do-hickeys (I was never a cook.) was a special treat. In this photo I was 8 years away from being born. My brothers and I really were raised by a village. One special dessert was cherry graham cracker something. While going through Aunt Vi's boxes, so many memories flood back---and I hold claim to her recipe book! Her address book. And soooo many receipts! Sewer, mortgage, rental, ha ha, I placed a sewer bill on my supervisor's desk at work one day with a post it note: "Can't figure out what this is for. Please advise." It looked brand new, but was dated 1915...which I had to later point out to my supervisor. We had a good laugh over that.

Everyone at work knew about Aunt Vi. I posted photos of her from the good old days on my cubicle walls. People often want to hear the "ghost stories," but I prefer the crazy family stories---the psychological drama stuff/ the favored son, the good Christian child beater, the bareback rider. I found a letter today where Aunt Vi talks about her brother Harvey, the one who joined the circus. She says in this version that he died of pneumonia. AND I found his discharge paper from the Marine Corp. for "illness," and he would not be accepted back. Still the mysteries live on.

I cleared out 3 boxes today with the help of my caregiver, and at least 3 left...every envelope I open is an adventure. Only thing missing is the children who I thought would share this adventure with me one day. Their loss. (And THEIR photos I am throwing in the trash.)

Third cousin twice removed by marriage and...HUH?

This is a photo of Marge. She is Aunt Vi's sister's daughter. My grandmother's sister's daughter. Can you figure out how she and I are related? And what a number! What style! She always dressed and carried herself like a movie star.

Guitars in Indiana, MS Fingers Play On

Here I am about 13 years old, playing guitar with two cousins. You could always tell when Aunt Vi took photos---she cut off someone's head. (usually the girlfriends of my brothers, uh-hem)
Here is a link to the band I almost got to play with: http://idealgreenreggae.com/
Check them out if you live near Seattle and on a local activities TV channel May 20th. (My pianist didn't know which channel...) I bought a real expensive guitar when I got a job at the local post office. It was f i n e. Later I bought one for a friend who said she had always wanted to play. When I moved to NYC from Ft. Wayne, IN, I asked a gay couple to hold my guitar for me and I would come back to get it---they were gone with my guitar when I returned, nothing ever mentioned. After about 20 years of no communication whatsoever (I sent letters--no replies), the friend's 20-something son moved to Seattle, I visited him and he had the guitar I had given his mom. Recognizing it right away, I asked if I could hold it. (My MS had messed up my hands and no way could I play it.)
I picked it up and my hands took over. The fingers moved and my brain joined in with the memory of a Johnny Cash song and off I went! I couldn't believe it. And so goes life with MS: full of surprises, good and bad. That's why you can never fold. Play the hand, just in case MS is bluffing.

On Line Brokers Crashing

Online stock brokers have their slips showing. Schwab crashes, are we our worst enemy? Who caused this debacle? People may have become billionaires in a minute. People may have lost millions. Friday will be scrambling and question dodging by every Wall Street entity. What average Joe will every invest in the market again? What average Jane will use an on line brokerage? Watch the spin begin next week. Fingers will point toward anywhere but the USA.

Stock Market Worst Loss Since 1987

Wall Street CRASH. What happened? All Greek to me...

Proctor and Gamble Down $46 a Share in One MINUTE

Whoops, a computer glitch hits Wall Street. Almost a 1,000 point drop, then back up--CRAZY!!!!!!!!!!!!!!!!!!! Looks like somebody fell asleep at the keyboard.

1920 Bikinis

Aunt Violet and Ivah, written on back: "15 and 19 Bikinis from 1920s"

Torturing People with Disabilities in U.S.A

"Mental Disability Rights International (MDRI) has filed a report and urgent appeal with the United Nations Special Rapporteur on Torture alleging that the Judge Rotenberg Center for the disabled, located in Massachusetts, violates the UN Convention against Torture.
The rights group submitted their report this week, titled "Torture not Treatment: Electric Shock and Long-Term Restraint in the United States on Children and Adults with Disabilities at the Judge Rotenberg Center," after an in-depth investigation revealed use of restraint boards, isolation, food deprivation and electric shocks in efforts to control the behaviors of its disabled and emotionally troubled students. Findings in the MDRI report include the center's practice of subjecting children to electric shocks on the legs, arms, soles of feet and torso -- in many cases for years -- as well as some for more than a decade. Electronic shocks are administered by remote-controlled packs attached to a child's back called a Graduated Electronic Decelerators (GEI)."
Read more here:http://www.tsplusblog.com/2010/05/mdri-stop-the-torture-at-judge-rotenberg-center/

Thanks to Rainlillie at Great Minds Think Like Me! http://greatmindsthinklikemerainlillie.blogspot.com/ for bring this to my attention.
We are becoming more and more, "Every state for themselves," mentality in this country. I don't like it. One America. One people. One Constitution.

Baby Doll in Green Wicker Chair on the Farm

My mother with a baby doll and, uh, a dead dog? Nah, I'm sure the dog just decided on a nap. That chair was in our (I shared a bedroom with my mom until I was 12) room all my childhood. It was green wicker. My mom's siblings were much older than her, so she was almost like an only child. She told stories of playing by herself, having pretend friends, just like me. She often said how alike we were. Yes, we looked alike, same coloring, but my oldest brother also looks like her. I, she would tell me over and over, was shy "just like me."

Funny, I spent most of my life trying to be NOT like her. But, I did admire and aspire to have her big heart, her nonjudgmental attitude about others, her childlike way of looking at life. She never expressed any problem with the fact that I would never marry a man. (I was spouting that before kindergarten.) She was easily embarrassed and my being gay embarrassed her greatly. BUT, speaking out for gay rights was fine. Go figure.

She was thrilled when I actually liked one doll she bought me: Chatty Cathy. And, yes, my middle brother broke Cathy's cord. I took a lot of heat from "the boys" for talking too much. Now, I realize they were not verbal types, we just were not a good fit.

I asked Mom if she still reads, "Oh, yes," she replied; but, I doubt this. Maybe I will read to her next time I call..hey! For Mother's Day.
****Written on photo back: "Red Velvet Dress"****

Reading a Book on the Farm 1930s

My mother reading a book at age 3. She was very adamant about the importance of reading. I don't remember her reading to me, though she must have...I do remember when she bought my first hard covered book: Danny and the Dinosaur. (Yes, of course I still have it.) I remember riding home on the bus from downtown, holding the book and feeling the smoothness of its heavy cover.

Though we didn't have much money, she bought the Encyclopedia Britannica for my older brothers and me. Wow. We played games looking up new words. My mother read a paperback book every night before she went to sleep, every night I ever knew her. There were hundreds in our basement, until I tossed them away. (Throwing away books should be a crime.) She never would read the same story twice and she hated to watch the same movie or TV show twice. Her books? All romance novels. ROMANCE NOVELS

Maybe I read one romance novel once...once. But the love of reading was something my mother gave me---a wonderful gift.

Losing to Alzheimer's, Daughter from Mother

The last time I called Mom in Indiana, I asked her how my brother Mark was doing. She didn't know who I was talking about.



Diane: You know, the one with red hair! (I laugh.)

Mom: Red hair!? I don't have a son with red hair. (And so it begins. A new loss. For some pathetic reason I am happy she forgot my brother. I always felt down on her list children's list. After I hung up, feeling full of myself, I realized that it was the first phone call where I forgot to ask if she knew who I was. Drat.)



Call today to Mom: Brrrring

M: "Hello?" (sounds sleepy)

D: "MOTHER!" (we laugh)

M: "Hello. How are you?"

D: "I'm ok. What were you doing?"

M: "I was just laying here."

D: "Taking a nap?"

M: (she laughs, her voice is softer than usual) "Yes. I was outside earlier...well, last night, before it got dark. The sun was out and it was very warm. Very nice."

D: "Oh, that's great. It's cold here." (we laugh, as we have for 28 years when discussing the weather, Seattle VS Ft. Wayne, I'm not sure what we find so funny...)

M: "It's nice here. What have you been doing?"

D: "Oh, going through boxes Aunt Vi sent of old photos and such."

M: "She's still alive I think."

D: "Yes, she is 103!"

M: (laughs) "Oh my!"

D: "She remembers the Titantic sinking!"

M: "Wow."

D: "Mom, do you ever get scared?" (I do. Does she? I have never asked her this before, ever.)

M: "Scared? Of what?"

D: "You know, the future?"

M: "No, I'm here for the long haul. It is a nice place. I don't mind. Do YOU get scared?"

D: "Yes...I do...sometimes," (I have never said those words to my mother, ever.) "why don't you? Do you just not think about the future?"

M: "No, not really. They treat me real nice here."

D: "Mother's Day is coming, so keep your eye on the mail."

M: "Oh! Okay!" She is or feins excitement and laughs softly. "I'll thank you now."

D: "Do you know who I am?"

M: "Ummm. No. Who are you?" (Damn.)

D: "Diiiii....."

M: "What?"

D: "Starts with a D."

M: "A what? Tell me!"

D: D! As in David. Your only daughter. Watching the water fountain lights change color at night. Walking to get ice cream cones..."

M: "Yes, yes, I remember..."

D: "Never shuts up. Talks all the time. D, starts with a D."

M: " A D... TELL ME!" (we laugh)

D: "DIANE!"

M: "Diane. Of course." (My heart is breaking.)

D: "Do you remember my middle name?"

M: "Let me see...Roselyn."

D: "Close...you're close."

M: "What's my middle name?" (she is asking herself, softly, trying to remember)

D: "Joyce!"

M: "Joyce! Roselyn Joyce."

D: "That's right! You named me after yourself, Pretty gutsy, Mom." (we both laugh loudly)

M: "Well, gee, thanks for calling." (That is my cue to hang up.)

My mother is still here to me, but I am gone to her. In hindsight, this has been a long time coming. She has outlived her mother, sister, and grandmother, in years. Also outlived her husband and one brother. I really never thought she would live this long. Her diet was so bad, and she mostly ate out then slept. Her mother and sister (both look just like her, as do I---genes) died of cancer. But so far at 82, Mom has escaped that. Amazing, really, her only malady has been type II diabetes.

Mom and I have said our good byes. I will keep making her laugh as long as I can. That has always been my role. I wasn't the daughter she dreamed of, but I was the best daughter I could be. And she was the best mom she could be. That was good enough for us.

WW I Army Boy Brought French Hankdkerchief

Uncle Arther, only 15, determined to sneak into the Army WWI, and he did, stopping, with many other soldiers, the German march on Paris. He gave his sister, my Aunt Vi, a silk handkerchief from France. (That she gave to me.)

Plane Crash in Indiana Lake, Art to the Rescue!

Okay, I'm finally getting around to opening up one of the many boxes of old photos that Aunt Violet sent me. I will read you what she has written on the back of this photo.

"Scene of plane crash in front of Art's cottage. He was first one out and kept telling the guy screaming to hang on, he was coming, but he was so excited he did not get the motor started and our cousin next door got to him first. Was Art mad!? Oh yes!"

"Art" is her brother Arthur, and I would guess this to be around 1940. Uncle Arthur had a beautiful little cottage at an Indiana lake. He joined the Army in WWI at age 15 (lying about his age to get in) and by all accounts a guy who was atheletic, fearless, and wanted to be a hero. He loved his "Dogs Playing Poker" picture that hung in the kitchen or den (I think my memory is slipping...though I was only 4...) and always made the women in the family laugh.

I do wish Aunt Vi had written more about the crash.

Ellen, Paris Hilton MS Shirt. Orange MS Clothes

Finally MS got a celebrity shout out on The Ellen Show yesterday, with Paris Hilton and her mom showing off some orange MS gear. YEA! (Not that they discussed MS at all...baby steps.)(But, WHY?) Get it here.

Screen Bugs Move Slow Have Wings

These bugs have been on our screens for a year now. They don't seem to move, but will be in different locations on the screen over many hours. Two made it inside and, um, met an untimely, but humane death. Anyone know what they are? Our bug book has yet to be found since our last move into an assisted living home.