Swing Kitchen Doors and Andy Griffith

While watching the new pitchman for Medicare, Andy Griffith, on his 1960s classic TV show, I noticed something I haven't seen in awhile--a swinging kitchen door. The old house I grew ip in had them, but I have not seen one in a newer house or apartment in decades.

Why? Were doors needed to keep men out or keep women unseen by visitors? Now, as I look around me, the dining room and kitchen are wide open.

Raise your calloused keying fingers high, if you think the switch started in the 1970s along with the women's liberation movement!

MS, Lindsay Lohan, and Misleading Google Alerts

Lindsay Lohan came up in my Google Alerts re: multiple sclerosis. Why? Because of a story about her release that included Paris Hilton saying, after HER release, that she would help the MS cause. (And she did wear a MS tee on the Ellen Show and attended the Nancy Davis MS Foundation fundraiser.) That's it.

Really, some of the Google alerts for MS that I get are ridiculous and misleading. Let's be honest, who has time to read the whole stories--we often just grab a headline.

Lindsay has no connection with MS. Google needs to tighten up its criteria for alerts.

Falling with MS, Old Age, and Disability. It's About Getting Up, Stupid!

When I was three years old, on Christmas Eve, my mother ran out of cigarettes. She started downstairs from Aunt Vi's famous Christmas Eve party, to get a pack from our apartment. I begged her not to go, and would spend my young life begging her to quit smoking. She would spend all my young life trying and failing. (In her 60s after ONE hypnosis session, Mom stopped forever.)

As Mom walked downstairs a visiting Dalmatian ran down and tripped Mom. Mom grabbed the railing, dislocating her shoulder. That was the first person falling I had ever seen.

When I was 4, Aunt Vi bought me a stuffed Dalmatian (Oh, my gosh, same type of dog!) puppy and I skipped (I SKIPPED, I DID NOT RUN) from Aunt Vi's car, cradling it and I slipped on a crack in the sidewalk, falling smack on my forehead. (The Aries' curse.) The elders rubbed a knife across the growing bump.

After visiting a dam in southern Indiana, with her 9 year old, Mom tripped, dislocating her shoulder again.

My partner fell after flying out of our studio apt. in Seattle while our blind landlord worked during a power outage on our leaking kitchen sink pipe. Later she slipped on ice after getting a coffee at Starbuck's for me. Such a hard fall, and she didn't move afterwards. I had a cane and had to ask a video store cashier to run over and check on her. (In Seattle we help each other like that, strangers--it's a beautiful thing.) A few years later she tripped, while carrying laundry, over a fan, breaking her wrist.

For awhile I thought people around me were falling at a statistically high rate. But, now, at 53, the fall I remember best is my first fall as an adult after having MS DX 15 years.

Not an unusual day, just making my breakfast, toast and OJ, when I stepped over to the counter and down I went. I would replay it over in my head a hundred times. The fall was not so bad, I fell as I had been taught in drama class, but I couldn't get up. Falling is easy, getting up is the trick I have not mastered. My partner is too weak to help me up. 911.

And so it went 6 months later, I was cleaning, bent down to pick something up and straight down I went, hitting my face on our beautiful African slate coffee table. A little blood and 911. After that I had to get an alarm necklace, wore it for years, HATED the feeling that I was a collared dog.
But, yes, I had to use it twice. Finally, since moving to an assisted living home I can put it away. It comes out only when I am alone.

Funny, I never minded the cane, walker, scooter, wheelchair, or power chair, but that necklace...seemed so permanent. Falls for the disabled and elderly are horrible events. They know it could be the beginning of the end. It baffles me, really, we are so close to the ground...

Gives more significant to "falling" in love. That can be very, very, hard.

Blog Award Thursday Day, Congratulations!

Yes, the red carpet doth roll out, and the Blog Awards go to:

http://kaleidoscopemuff.blogspot.com/ Kaleidoscope Muff and her jouney through MS;

http://lapazconvos.blogspot.com/ Peace Be With You on the MS Journey--poems to move and inspire you.

http://brassandivory.blogspot.com/ Brass and Ivory whether Lisa is posting about MS, RA, or her cats, always a good read!

http://lovingwithchronicillness.blogspot.com/ loving with chronic illness "Living in NYC, studying social work, and making time to be Maya: a daughter, a sister, a girlfriend, a friend, a writer, an animal lover and a Spondylitis patient. Every day I'm learning to live and love not despite chronic illness, but because of it."

So many great blogs out there, more awards to come. Thank you Jasmine's Cove http://jasminepw.blogspot.com/ for mine. I want to thank my blah blah blah blah and all the blahity blahs who helped me blah! sniff sniff

Lemons, Jasmine, Blog About Illness and Drink Up

The MAKE LEMONAID OUTA LEMONS goes to.....drum roll please: jasmine's cove
http://jasminepw.blogspot.com/
Read as jasmine deals with day to day life while living with chronic illnesses.
You may applaud now.

President Obama in Seattle and on The View

President Obama is coming to Seattle "mid August." I am hoping he stops by the Viewpointe on Queen Anne. What?! If he can stop by The View Thursday...
PS--NY Times, PLEASE stop calling him "Mr. Obama." Good Grief.

Transparency or Not? Which Will We Die For?

Would you believe my Kindle did not deliver my NY Times today? And the Wiki Leaks site is down, likely flooded with hits. WHO KNEW? Really? Americans want to know the TRUTH about a war we are killing innocent women and children in, not to mention our own troops? Some people are really mad at the 22 or 24 year old soldier who leaked the info (He sneaked it on a DVD labeled "Lady Gaga," with ear phones on he mouthed the words to one of her songs--wow, that's some super safe, high-tech security operation we got going on over there, even Barney Fife could have pulled this off.) I just knew when the sh** hit the GE fan, that Lady Gaga would be somehow involved.

OK, so our ideas, we lazy boy chair quarterbacks, about Pakistan helping the Taliban insurgents behind our back and with the billion per year in aid we give them to FIGHT the Afghan insurgents, were right on the money. Now why did we suspect such skullduggery? Can anyone say, Reagan arms sale to Saddam Hussein and Afghan (to fight Russia no less)? Our stupidity with giving money to build forces that are eventually used against us are well documented--why would we be different now?

Since the word has LONG been out in other countries that the U.S. CIA sucks big time and is basically a joke, why would we suddenly believe we have our act together?

To the soldier who could not stand hearing all the lies I say, "I salute you!" Others shout, "He will cause deaths!" Oh, like WE have not been causing the deaths of innocent people, not soldiers, not warriors, just a child holding a cookie (to name one of hundreds and hundreds, how MANY died in that "shock and awe" that killed nary a scary gas toting, black mask wearing super Iraq guard, those whom we were assured would be waiting to destroy us!) for many years now.

This was to be a nation of transparency. Indeed. Russian spies here for decades, Taliban trained men attending our universities--we are VERY transparent to the enemy, perhaps it is time to let the people of the U.S. know all the truths of war so that we can make decisions based on facts, not emotional outbursts of sound and fury. I salute whistle blowers everywhere. True patriots, to the people and for the people.

As soon as I finish The Warren Report, The Pentagon Papers, and the U.S. Constitution, I'll find the newly leaked information (well edited) and get right on that.

Sorry, Copaxone Users

I'll take this opportunity to apologize to all you Copaxone users: even though I have been off C for 6 years and written notices to Teva to stop sending me glossy junk mail, email surveys, and calendars, they still do. I may have even sued them in a class action suit...I forget. And even though I have cussed out the Shared Solutions data gathering callers and made doctors admit they get kick backs from pushing C---still today I get another piece of junk mail. I am sorry your drug co. of choice is WASTING money on me.

New Help for MS? Sirtuin and Notch Pathway Across Blood Brain Barrier

An article in the NY Times today tells of a new discovery made by MIT (Massachusetts Institute of Technology) researchers (NOT BIG PHARMA) that shows that by activating sirtuin (a protein possibly capable of causing longevity) in mice prone to getting Alzheimer's, it suppressed the disease.

Sirtuin seems to neurotransmit the message to protect (mice) brains by activating the notch pathway. (Yes, I said it and yes, I like those altruistic, though caged, mice) The notch pathway is a super highway in our brains and when our brain is stressed, like by malnutrition (Remember my post about parasites causing MS since poor countries rarely have a population with MS? Their malnutrition could be soaking their brains in sirtuin, thereby preventing cell damage in the brain...) it kicks into high gear, passing along cell protection.

Sirtuin and notch pathway research---look for all the MIT results in Friday's issue of Cell.
This might help many neurodegenerative diseases.

Whale Hops on Sailboat. Bear Steals a Car

Awoke to the morning TV news and saw a whale jump on a sailboat and a bear hop in a car, releasing gears and crashing--the jaws of life had to get the bar out. Even the wild beasts can't stand the heat that is scorching most of the country. I would chose another way out, but to each his/her own. Looking for record high in Seattle today. (I won't embarrass Seattle and tell the rest of you what that might be. Don't want to rub in our natural A/C out here.

Zsa Zsa Gabor Falls: This May be Last One

Why do so many older people die after a fall and a broken hip? Hips can be replaced, right? Is it the hard fall? Zsa Zsa Gabor reportedly is now in a coma and barely responsive. I have known too many woman who die after a broken hip. Zsa Zsa is like an old friend from my childhood She had "it." Anyone else have memories of the Gabor sisters?

Off Label Fat Cells Killer

Did I read right? One of the DMD (disease modifying drug) drugs is also used for arthritis and colitis? Ever read/hear something and not know where you read/heard it? Anyway, got me to thinking, now, if you are a regular reader here, then you know I am not a cheerleader for those, "Get 'em on right away. Diagnose earlier. Watch the relapsing/remitting disease remit and mark done a statistic--success!" drugs, and why not sell a Copaxone shot to some disease that diet and exercise can greatly affect?

Like the many diet drugs come and gone, "when included with a healthy diet and exercise..." the stats for an initial success would be quite high. Maybe the FDA won't allow that. But here is my point:

Copaxone injections remove fat from the injection site. I am proof. I will be on the commercial on TV. Now, after almost 20 years, even Teva has announced that Copaxone destroys (not sure how they phrase it) fat cells. Yep, from my stomach, under my arms, so I asked myself, "Diane," I says, "Diane, why wouldn't they sell it for THAT? If the FDA finds it safe for MS use, it will be safe for fat removal use."

BUT, here, I think is the problem: No insurance would pay for such a cosmetic drug. And if they sold it over the counter (and why not if it is so safe we can use it long term?) it would have to be sold at a much reduced cost. And if they made a profit THAT way, then how could they explain needing the extra money from MS patients? They are in a pickle.

Is Teva even investigating making a fat removal drug? (It doesn't seem to come back either! How cool is that?) I'm just askin'.

I am Being Threatened by an ANGEL

Here is email I got today from "Stan" July 22, 2010 at 7:14am
Subject: i have blocked you from my page for this comment that is against the rules of my page:
"I think the DMDs are fake. I'm no angel and neither are any of us. My opinion."IF YOU FIND A WAY TO SNEAK BACK IN I WILL REPORT YOU TO FACEBOOK"

OK, look, you stalker, YOU FRIENDED ME. I BLOCKED YOU before you "blocked" me. Get off my back, you and all your angel-followers. Your Facebook page is full of nasty, angry, people with MS--I would rather eat liver with onions and spoiled salsa than get near you, your angels, or your Facebook page. I hate FB and am only on to play sin-filled poker and look at photos from family and friends. Oh GAWD how I wish you would "report me to FB," maybe saying I hate FB will do it. Try, Stan, you seem to have plenty of devilish time on your hands. While you are at it, you could report me to the DMD companies. Gather your "angels" and start a write-in campaign. Have fun! OH, and I have a few socialists and atheists who are my "friends"-- go after them too, show FB how evil I truly am! PS--"sneak back in?" YOUR followers showed up on MY FB pages! (And THAT is why I blocked YOU)

Smorgasbord of MS Cures, Yum!

Okay, I get the logic, but what on earth will the experts think of next? Careful what I ask for, right? But thank you, no. Few in Japan get MS either. I'm not eating worms (parasites, whatever) to make my body like that of someone in a poor country. Besides, what is their life expectancy? Probably not 40 and who among them sees a Dr. yearly and gets an MRI? sigh.
http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=3465

That's Right, I am no Cult Member or Angel

Stan's Angels can go to Hell. Yep, I said it. Talk about hypocrisy and delusional cults. I am being trashed on MY facebook page because of a comment to a comment from an MSer who basically said she was tired of people telling her negative things about being on Tysabri. My comment was that *I* am tired of people telling me negative things because I am NOT an Tysabri---man did that set the "Angels off." They said I had no righjt to be among them. I said, first of all you are not angels and I have every right to my opinion. (I had actually AGREED with the first person, that "to each his own." THEN they really jumped on me. That *I* was no angel and Stan was an angel (whoever Stan IS--he asked to be MY friend, I never asked to be HIS. And this is another reason I hate FB. People want to be your "friend" and they don't even KNOW you. Obviously Stan has never read my blog! I was lastly told that " NO ONE WHO IS NOT A MEDICAL PROFESSIONAL SHOULD SAY ANYTHING NEGATIVE ABOUT ANY MS DRUGS" (something like that) I dropped this Stan person as fast I could, but still got follow up comments to my parting thought: I believe the MS DMD drugs are fakes. I actually thought this could lead to a discussion, instead it led to dumping on ME. BECAUSE, I was being negative.

'Tis true, if by negative you mean I do not follow blindly without my own observations, my own research, my own experience to guide my conclusions. If by negative I do not believe every stranger to me on this Stan person's FB is an angel, 'tis true. Angels don't treat people like they are demons, evil, dark clouds, just because they disagree with them.

Another cult-like site/group of people with MS--I have encountered two now. The other one had a "secret handshake" Good Grief, talk about children playing games. People call me negative who don't know me and luckily so, because they are people I have no desire to know.
Here are some of the jabs at me: "AMEN CINDI! I really did not want to put a "negative" spin on "nobody being a angel".......but I am really peeved at that comment. PLEASE DO NOT COMMENT OR BE A PART OF THESE ANGELS IF YOU ARE NOT HERE TO SUPPORT OUR ANGELS! THERE IS OTHER PLACES FOR YOU AND YOUR COMMENTS....NOT HERE!" (I see. My comments are asked for only if they agree with your thoughts.)

'Diane, everyone is entitled to an opiinion, BUT the people in this forum ARE ANGELS! Anyone who is willing to take time out of thier lives/day to help support others in need as they have me, IS AN ANGEL! And the biggest Angel of all is Stan for getting us together and taking the time that he does to help us all. Feel free to not consider yourself an angel, but the others here ARE MY ANGELS and have restored my faith in ANGELS!" What forum? You are showing up on my FB page.

"I didn't want to either, Robyn. But, there has been a lot of negativity on this site here of late and it should not be allowed!!! I say if anyone comes here with a negative statement, especially like the one here. They should be blocked immediately!!!! Stan' site is a wonderful place filled with love and hope and support. I can pin point when this all started but, I am not going to point any fingers. If ya don't wanna be an Angel, I say leave your halo at the door and don't let it hit you on your butt on the way out!!!!!! (((((((HUGS)))))))) : )" Uh-ok, gladly. And FYI--I never called myself an angel, so obviously I have no halo to leave and I never said I didn't want to be an angel, but this snippy group is not what *I* consider angels. Angels I hang with accept people as they are and are not selfish. Hugs alone do not an Angel make.

One more: "All that I can say is, WOW!!!! Some people never cease to amaze me!!!! YOU ARE AN ANGEL, STAN. Sent from heaven. Some people are miserable as hell and quite frankly there is no room for that here!!! This is a place of refuge and support. A place to come to break away from the negativity that we see in our lives on an every day basis. if ya can't stand the heat.......get the hell outta the kitchen!!!!! Just sayin'....Love ya, Stan!!!!"
I am not miserable at all. As I have often stated, not that any of you read my blog, that I am a happy person. It sounds like Stan's followers ARE very miserable and seeing negativity "on a daily basis," can't stand the heat--get the Hell out..now THAT is funny. Makes no sense, but it IS funny. Clearly Stan's site/blog/whatever is helping some people feel good and I am all for that. But, they need more because it appears their lives are still very low. Lots of anger, fragile spirits.
I blocked Stan and his angels and wish them good luck. And man do I hate FB. So 7th grade.

Alzheimer's Cure is Coming, but No Cure for MS

Alzheimer's will soon be diagnosed very early in the disease stage. Unlike MS, I believe there will also be a drug that halts the devastating disease, at your local pharmacy, very soon. The Baby Boomers would have it no other way. Remember how men died from AIDS? Now they live with AIDS. I wonder if more men than women got MS...just wondering. Seems some "newer" diseases that scare people who realize even THEY might easily become infected, get a fast track towards a cure. What I am wondering is how can drugs and solid information among researchers across the world happen only for some diseases and not others? How long has Jerry Lewis been fighting for money for MD? Is it just luck? If famous movie stars and presidents got multiple sclerosis, might we have a cure now? I am sorry to sound selfish, so many suffer from chronic, deadly diseases, wait my turn, I know.



It is troublesome that so many college-bound students are cheating on exams these days. Schools are supposed to teach critical thinking. Unfortunately, many kids are learning to cut and paste instead. (And I don't mean kindergartners.) Where will the U.S.A. get its next great scientists from? The football quarterback gets the girl and a chance at a career, good grades or not. Where is that documentary about researchers and inventors in the U.S.? A dead breed? Just asking.

Tea Party Refutes ADA? MS Cure Headline? TWENTY YEARS?

Can you (I) believe it has been TWENTY YEARS?? Since I held up the NY Times at my office desk after being off for uterine tumor surgery (just 2 weeks after hearing I had MS--the more I say that the wilder it seems!) and there was the article about President George H.W. Bush signing the Americans with Disabilities Act! Just a few days before or after (can't recall) the headline was: CURE FOR MS FOUND. Was I lucky or what? No better time to get MS!

Well...MS cure fell through and the ADA still has not lived up to its full potential. TWENTY YEARS.

I have noticed, just like there are more gay people now than then, THERE ARE MORE PEOPLE WITH DISABILITIES!! Go figure. Yes, we of the wheel chair family are able to get around more now (build it and we will come); and yes, there are drugs just for MS now (though I am not convinced they live up to their hype)--but my God, 2o years is a long time to wait for all theaters, restaurants, and parks to be fully accessible.

The ADA is a solid law of the land. It is people, who could make changes but are too cheap, who have failed us. All of us. We are only as strong as our weakest link. Every apt. I have lived in over the last 20 years had to be modified for me. And nothing was changed when I moved out because such changes make living easier for everyone. (I can't believe the Tea Partiers want to do away with the ADA)

As for that MS cure? We will cure Alzheimer's first. Similar testing issues, but Baby Boomers will DEMAND a cure before they enter that age of no return. If MS had marketing that showed how we suffer slowly, progressively, from a young age until our death (about 40 years if nothing else kills us), we are not elderly, we may never get the chance to dance at our children's weddings or drive to a vacation spot in the sun, maybe more people would understand how much we need a cure too. I'm hoping the research for Alzheimer's will lead to help for all neurological diseases. (How DID Alzheimer's researchers get so much money so fast? Alzheimer's hit the radar screen only in the 1970s..MS was collecting money decades before. I wonder...)

Where is Waldo? When We Stop Blogging

Here I am again. I always wanted to press that delete blog button. Honestly? It felt great, very freeing. I was free to write my WIP (work in progress or "My Book" as I've come to call it) and read new books, savor the NY Times, no deadlines, no reading of many other blogs, no surfing TV news--what did I do? I started a new blog about my assisted living joint. AND (sit down, I know I had to) (ah ha, ah ha) I started a new book. Am I crazy? Yes, I self-concluded that I am.

NOTHING was gonna bring me back here, no siree. Not like the last time I quit and what happened? Hillary freaking Clinton was running neck and neck against the first African American for President! Drat! Back I came. The excitement was overwhelming.

I woke up this morning and wrote 2,000 words of my new WIP and I was thrilled! Then the phone rang. It was my incredible cousin from Ft. Wayne, who has looked after Aunt Violet for the last 5 years. Aunt Vi had taken a turn for the worse. Her vital signs were sinking. The end was at hand. This again is when I hate MS--how can I help? So, again I began contacting relatives to prepare them for Aunt Vi's departure. Several leaped into action. One dissed me. His father would be ashamed. I will hope I am wrong and his computer just malfunctioned.

Then I wrote a farewell to Aunt Vi. Am hoping it will be read at her funeral. I will also prepare an obituary for Seattle. All my co-workers knew about Aunt Vi. Besides this is for me. She always ranted about women putting "younger" pictures of themselves in the obits. Yes, Aunt Vi has been talking about her death since I was a little girl. She wouldn't have been much older than I am now and I don't think about the details of my own passing nearly as much (I didn't say never) as she. But then she had seen many people die young. Her oldest sister at age 57. Her oldest brother in his mid-thirties.

The next phone call was a few hours ago and Aunt Vi has apparently rebounded. (again) I suppose the saddest thing is that her vision that she would die in her sleep has not happened. Maybe she misread that vision--before the peaceful sleep will be some suffering. Yet, isn't THAT kind of how everyone eventually goes?

Here I am. The BP cap is seeping. The Seattle bandit boy has been captured and his upstanding mother has a movie agent. Lindsay is off to jail, so overcrowded that she will be released in swift time. Opie killed a bird and Ron Howard is filming a comedy with Queen Latifah. President Obama took a vacation, thank goodness, and jobs are coming back though not as fast as CEO profits are rising. Alzheimer's is looking to be a disease that will be conquered in the coming decade. (If people could see MS as 40 years of progressive suffering, as opposed to about 10 years of their parents with Alzheimer's, where the caregivers suffer more than the unknowing patient, MAYBE we could get a faster cure too. But, no, we are seen as being able to overcome on our own, thank-you glossy ads that show mountain climbers and runners and big, big, SMILES!)

Well, any cure of a brain problem is a step closer for all neurological diseases. Sooo, here I am, back and ready to roar. If you are reading this, Aunt Vi, remember, I've got your back.

Slam MS Self-Esteem, BIG PHARMA has Jumped the Shark and Good Intentions Straight to Hell

Well, let's begin.



The way in which TYSABRI works has been studied, but the exact way that TYSABRI works is not fully known . It is not known if MRI findings relate to how well your MS is progressing. TYSABRI does not cure MS and has not been studied for longer than two years. From the Tysabri home page.

COPAXONE® is believed to change the way the immune system reacts to your multiple sclerosis by preventing harmful cells from developing and by stimulating beneficial cells in your
body. After the 2-year pivotal trial was completed, 208 of the original 251 participants continued on... extension study demonstrate how COPAXONE® helped the 108 people with RRMS who stayed in the study over a 10-year period...who remained in the study and took COPAXONE® MS therapy continuously for an average of 10 years had approximately 80% fewer relapses than they had before going into the study. That means they went from experiencing an average of approximately 1½ relapses a year to approximately 1 relapse every 5 years. From the Copaxone home page.

AVONEX is the only once-a-week multiple sclerosis treatment proven to slow physical disability progression, reduce flare-ups, and work after the first attack. That’s why, since its approval more patients have chosen AVONEX than any other MS treatment in the world. (The Avonex home site won't allow you to copy its information in total so I will have to type a smidge: ) ...slow the occurrence of some of the physical disability that is common in people with MS. FDA-approved labeling includes up to 3 years of clinical data.

I could go on and rat out all the other MS drugs, and I think I will in other posts, but I just want you to get the idea, because they all are pretty much the same. Now let's look at the REAL expert, The National Multiple Sclerosis Society, from their web site:
The Four Courses of MS
People with MS can typically experience one of four disease courses, each of which might be mild, moderate, or severe.
Relapsing-Remitting MSPeople with this type of MS experience clearly defined attacks of worsening neurologic function. These attacks—which are called relapses, flare-ups, or exacerbations —are followed by partial or complete recovery periods (remissions), during which no disease progression occurs. Approximately 85% of people are initially diagnosed with relapsing-remitting MS.
Primary-Progressive MS This disease course is characterized by slowly worsening neurologic function from the beginning—with no distinct relapses or remissions. The rate of progression may vary over time, with occasional plateaus and temporary minor improvements. Approximately 10% of people are diagnosed with primary-progressive MS.
Secondary-Progressive MS Following an initial period of relapsing-remitting MS, many people develop a secondary-progressive disease course in which the disease worsens more steadily, with or without occasional flare-ups, minor recoveries (remissions), or plateaus. Before the disease-modifying medications became available, approximately 50% of people with relapsing-remitting MS developed this form of the disease within 10 years. Long-term data are not yet available to determine if treatment significantly delays this transition.

Let me repeat that: Long term data is NOT yet available to determine if ANY treatment has done ANYTHING to change the normal "transition" ie PROGRESSION of MS from RRMS to SPMS.

Do you get that? Do you see the 50% here and the years there, the mixing of "may" "could" and so on? I also am finding fewer places willing to say, "There is no cure."

My super expert neurologist back in 1990 was deep into research for Copaxone. I read all his data, in his waiting room, long after my appt. was over. It DID look very promising and there had been nothing before, no drug to give us, just "diagnose and adios." I was as excited as he was. Then human trials began and interferons came onto the scene, drug companies were in a race for the almighty dollar instead of the almighty cure. Why do I say that? Because I could read between the lines of my doctors answers to questions. I heard his words, people needed to test these drugs now, people with MS, LOTS of people and years would need to pass because as I asked him, "My MRI was fine after being horrible. Why?" He didn't know. "If 50% never progress anyway, how can you tell the drugs had anything to do with a slowing?" Good question. His fall back was always that there would be new and better drugs coming. "How much slowing will they offer now? A year? Two? A day?" Same answer as every doctor I have seen in twenty years, "We just don't know for sure yet."

So, as my MS continued to get better, some of the best years of my life after some of the worse, my Dr. still at each yearly check-in, would want me to go on Copaxone. (By now he had many Teva speaking engagements and the more the merrier.) So I asked him, "What would you do if you were me? Would you go on it?" He said, and I quote, "No." His honesty was a gem...in those days. And I do not doubt his desire to cure MS. I don't doubt ANYONE'S desire to cure MS. Are you kidding? Can you imagine the accolades? The awards? The MONEY drug companies will make? My Dr. told me once that he had, "...a cure, on paper." That was 8 years ago...I still wonder if it accidentally slipped in a shredder or his dog ate it?

I will look (if I decide to keep this blog) at all the new drugs in future posts. I will sift through the ad deceptions (I believe it was Avonex that got in trouble some years ago for their content. The FDA is really busy right now and make hay while the sun shines, right?) and slam any site that sugar coats the truth. Yes, I kind of have had to do this before, but with the current flood of new MS drugs, well, sometimes I can't take what they are doing to people. Why do they treat us like children? We want all the facts so we can make an educated decision. At least I do, perhaps there are still many who just want their doctor to "take the wheel" like Jesus. If you are one of those people, then have no fear, your Dr. will be more than happy to do just that. And you might not want to read my MS posts, no Jesus here. I will be dealing in science. (I have found that some people think Jesus and God were anti-science, seems odd to me, but to each his own.)

My FIRST neurologist, who diagnosed me, then split to Calif. (hmmm, just like the next one) told me that I shouldn't worry, 50% of people with MS will never need a wheel chair (I hadn't thought that far ahead on that day, but...OK) and he saw one of his patients who is in her 80s using just a cane and getting on a Metro bus "just yesterday."

After my first 9 years of severe symptoms, starting in 1982, I felt confident I would be in that 50%. I took all the credit for my well-being---my good diet, my exercise, I was happier than ever and life was great. WRONG. Arrogance. My MS was simply following a natural course for the disease when you are relapsing/remitting. My copious notes in many journals over the years, back that up. I have been vegan, I have been off dairy, I have used every combination of vitamins, I have tried it all. (No Atkins though, nope, not healthy long term.)

I have MS. It has left me with a disability. I am 53 and I have no idea what MS will have ahead for me. I feel great. I am happy. I sleep great. I work out every day and plan to walk again. I see a bright future and I try not to spend my days thinking about MS. It is just a part of me like my crooked fingers. Everybody has something, none of us is perfect.

So what made me so furious? I was reading a blog post one day and up pops a LOUD colored sign (I tried sooo hard to ignore it---may have been a yield type sign.) and unfortunately I have great peripheral vision, it was saying something like, take our drug so you don't end up here---then it flashed a dark wheel chair. I was in shock. Seriously?! How dare they? I got off the site (the post I was reading linked me there to finish a story) and left a swift comment that I had never been so insulted in my life. (And I really don't think I have!) Talk about using fear and threatening with (God FORBID) a wheel chair! The horror! To have to need a wheel chair! I'm surprised that drug company (which I later learned was Biogen and was told the ad was for Tysabri) didn't put Frankenstein in the chair. (I will let Mel Gibson take it from here and tell Biogen what I think of them.)

Then to put a cherry on my MS sundae, I got in the mail, oh, about 50 pages printed from a computer about how if I just let God's will heal me IT WILL! I will be CURED! A well meaning relative sent me a package about curing MS with the Hallelujah Diet. They even have (surprise!) a Hallelujah CENTER! in North Carolina. (You can buy supplements and juices and recipes on their site too! To quote Gomer, "Surprise surprise surprise." Seems to me the Godly thing to do is not charge for any of this cure...but what do I Jim-Baker-Know?) I'll tell you---it's the gluten free one, eat raw, juice-up. Works great for those with Celiac disease. MS? hahahahahaha Know when these diets help you feel better with MS? When you have a certain food allergy or Celiac. Eating healthy helps ANYONE feel better. But a vegan diet didn't keep Linda McCartney alive. And I could go on with that!

Here is the maddening part, my relative's written comments: "First let me say that if you sent me info on "how to grow hair on my head," I would probably dismiss it and say that I'm doing just fine without the hair. So, if you discount the info I'm sending, I have no problem with that."

Seriously? Was this piss Diane off day? He goes on to note what he is including: "God's Way to Ultimate Health" and pages from Yahoo about causes of MS and "A review on myelin." He asks if I ever considered one of the B vitamins. (Clearly not a long time reader of my blog, on sooo many levels.) "When you see your neurologist next, you might ask if he/she has found B-12 to be helpful to repair myelin." sigh

The guy went through so much time, thinking about my health problem, trying to help...says he reads my blog...he HAS found out not to send me emails about how bad Obama is. I just feel insulted, again, on so many levels, and this guy is over 65, not a dummy.

Again, it is the blaming of ME for my MS, for my need to use a wheel chair. I could make it go away if I just read the Bible, followed God's word (Genesis and Leviticus are quoted, you know, God gave seed to eat not meat or dairy or fire (?).)

Yes, I was told in one day that I caused my MS state. That I could get rid of my MS problems if I just did ____. It is MY FAULT. I AM NOT TRYING HARD ENOUGH. I CHOSE TO DISCOUNT THE SIMPLE CURES. And MS is like being bald. sigh. Oh, and I guess I don't follow God's commands in the eating Dept., Heaven will be full of Vegans. That's pretty cool.

Listen BIG PHARMA and well-intentioned people, people with MS have a hard enough time embracing their disease, a hard enough time looking in the mirror each morning and feeling good about themselves, a hard enough time searching for something, ANYTHING, that might make them feel better for a day. Being lied to, cheated, belittled, and told all YOU imagine we are doing wrong or that God has THE answer that WE obviously reject---guess what. IT IS NOT HELPFUL. And wheel chairs are not scary monsters. If you believe that, the terrorists have won.

So Angry that You Can't Let It Out

I am so furious that I can not write about it yet. I need to take a breath.

RED HOPE MS BRACELETS RETURN

Joy Joy Joy, Happy Happy! We found my red MS HOPE rubber (are they rubber?) bracelets! We searched for YEARS! (They were in a closet.) When the MS Society first came out with them, I quickly bought a boxful and began handing them out all over Seattle. I think I hit most of Starbuck's baristas---at least downtown and in my neighborhood. People were happy to wear them and talk about MS. I hope many conversations about MS were begun. Still, the biggest hit on my blog is the post about the missing RED MS HOPE bracelets. Our RED stolen (as I see it) by the Heart Association. I'm embracing (what choice do I have?) the orange color, but gee-whiz. I wonder what I can get for the RED HOPE (unopened) ones on Ebay? :)

Can you imagine if someone arbitrarily decided to change stop signs to orange? Or the Red Cross to the Orange Cross? Good grief. I still would love to hear the back story on how we lost our red color for MS.

103 Year Olds Can't Wait for Doctors Too Long

My great aunt Violet went to the Dr. to have her ears irrigated. "She kept the waiting room in stitches," my cousin said. She did however call the doctor a son of a b____, and while waiting shouted out (as only someone with stuffed ears can), "Why is the doctor taking so long?! Doesn't he know I am 103 and could go anytime?!"

Jeopardy Loser. Post Traumatic Stress? Agent Orange? You Get Your Break

There should be a refresher class for us older people (over 30) to go over history and math again. I have been getting my heiny kicked by kids on Jeopardy, and so I bought some history books on my new kindle (don't buy one unless you can't hold the NY Times and are allergic to ink, the book selections are awful) and got a big one (I can barely hold it) from the book mobile; we the people didn't conquer and claim America for freedom. We did it for MONEY. I am so disgusted.

To wit: Any Tea Party members who are God-fearing, war veterans, might want to consider that your "party" wants to do away with the Americans with Disabilities Act, while thanks to it, under Obama, we will now allow disability status to ANY soldier from ANY war for Post Traumatic Stress Disorder. Have Gulf War symptoms? Just say so and you should be approved. You could have been a cook! No more having to prove you shot a man or any red tape! Also consider all the Democrats who pushed for improvements in rehab and VA hospitals across the U.S. in the last 8 years. (While the Republicans tried to hide how awful we were treating out Vets!)

Spy VS Spy Just Find Bin Laden

Am I the only one who sees MAD Magazine's Spy VS Spy around here? A "swap?" Can't we find a spy to find Bin Laden? Just askin'.

The L Word and Betty White

Guess what!? I have hundreds of channels on my TV! I did not know this. Years ago I checked out The L Word on Showtime; I mean, I had to, right? And I gagged. Seriously? Yeah, like gorgeous lesbians are abundant in REAL LIFE. Okay, maybe in San Fran or NYC, but the rest of USA? GIMME A BREAK For a butch, such lesbians are 1:9, lipstick lesbians. I was disgusted. Then my gay friends, well, actually gay friend, that's right I said it, I only have one, kept bringing it up. Fast forward to last night.

I get LOGO, a gay TV channel! Who knew? I watched The L Word and...hold it...hold it...I liked it! Then I had to ponder what has changed in me. Was it seeing Ellen with beautiful Portia? Was it knowing NOW (since they have come out and thank you, Ellen) that many of those actresses actually ARE gay? No, well, yes, that certainly is part of it, but my desire to see "real" lesbians in a TV series was just stupid! Do we watch Grey's Anatomy to see "real" men? Uh, no. McDreamy is a McActor---and I of all people should have considered this truth! (I'm referring to my limited acting career and that of my partner's, less limited). This is entertainment.

Let's face it, even Betty White would stick out like a sore thumb in any retirement home east of Hollywood. Without make-up, hold it...hold it...even Sophia Loren looks more regular. (I'm pretty sure. Maybe.) Only gay men are beautiful all the time.

What I found fascinating was: What kind of commercials would there be? What are lesbians buying these days? Here they are--a psychic reader 800 number, pet hair removal comb. beer, a seminar to stop anxiety (?), the Hover Round (!?), an Energy drink and Vegas. Oh, and what ever lesbian must have--make-up. (!!??) Some are just a head-scratcher.

The L Word is like a romantic soap opera thingy. I think. I'll watch some more and see what I think. I'll tell you what, there was NO TV like this when *I* was 18 or 25.

Heat and MS Don't Mix

My computer is acting up, and I don't know why. Well, BlogSpot is acting up. So, don't be surprised at anything you see.

Heat and MS--DO NOT MIX. Ha ha, impossible, so we must do our best to stay cool. You know, like they, mankind, has being doing for millions of years. (except now we have electricity, thank you, Tom) At night, blow cool air in, during day blow it out. Keep a fan or as many rooms as require, fans, blowing. The electric company will love you and so will your MS. DRINK WATER. Use ice cubes, be creative, wrap wet/cold anythings around your body. Keeping a cool head is good advice to all.

You will hear/read why heat affects MS, but I believe the "experts" are still not 100% sure. So many mysteries about MS. We ARE sure about THIS---heat will worsen MS symptoms. Years ago it was how they diagnosed MS. Stick you in a hot bath and watch. (still works, by the way, or BTW as one must say now)

It will be 93 in Seattle today and the natives are freaking out. Seniors need special attention too, because they dehydrate faster, don't drink to prevent accidents, fall asleep and overheat. Our place here will go on high alert, watching the residents and passing out lemonade or iced tea. I may open the hall door and take in some free AC, but a nice breeze from Lake Union, should do the trick. I also find an aspirin helps too.

Stay cool, folks. Grab a seat in the shade. Chillax. I'll be back when the temp lowers.

Lindsay Lohan So Full of Anger

Lindsay Lohan has been sentenced to 90 days in jail for not following court orders. Her painted finger mails in court yesterday says it all: "f--- U" (Obviously a woman out of touch with reality as that finger says it all without the need for additional writing.) After following her career, I see a natural actress, she has got "it." Unfortunately, she never had parents who had "it" (The knowledge of how to raise a happy child.); and I find that so disturbing.

Yes, at some point a child grows up, becomes their own person, remove themselves from their damaged parents and move on, but Lohan's parents insinuated themselves into her life every step of the way---in other words: Lohan had no way out. You would be angry too, and scared.

Now, dealing with addictions and intense anger, Lohan needs help from the outside world. She has become our problem, just like millions of other people do. I must say, I do not mind helping this one. Adults who take advantage of children get no sympathy from me. The children do, and Lohan has the natural talent to become someone I would pay money to watch. She and Jodie Foster are 2 degrees of separation apart. Both extremely talented artists, but one had great family support, the other had none.

Finding a partner in life to help her would be an answer. But damaged people are not easy to live with, love, or heal. It seems Robert Downey Jr. has finally done just that, I hope Lindsay can too.

BP ADMITS TRUE FEELINGS ABOUT SPILLS

Robots to Love Our Elderly Parents. Enter Paro!

Once, long long ago, in a world far far away, grandparents and elderly aunts and uncles, lived with their families through their final years. Really. They did. And it was expected, even ordinary, not a thought given to it. Now? Elders are dumped, (is that too harsh for you to hear?) in "homes" along with other older people and caregivers earning minimum wage.

Why has this happened? Is it selfishness? How can one care for a parent with dementia when one is working full-time? Fair enough. But if a caregiver can be paid 8-5, what then is the reason? Are we too tired after work to care for our parents? Yet, we find the energy to party with friends, play a video game, tend to our pets, etc. Oh, so much drama, left-over issues from how our parents raised us. I suppose the reasons are vast. Yet, those reasons never stopped generations of olden days.

Okay, it is the desire of the elderly relative not to "be a bother." Of course we COULD say, "No, bother at all." We COULD insist they stay with us. Yet, they don't seem to want to! Are the issues THEIRS? Hmmm, maybe we could talk to them about those issues. Maybe we could resolve them. Too much trouble and there is a fine "home" right down the way. Close, they will be visited often. Right.

Enter Paro. Paro is a robotic baby seal. When Paro was given to a mother in the early stages of dementia, in Pittsburgh, the mother's uncontrollable agitated state and general unhappiness was resolved. Paro blinked, made sweet baby noises, responded with wiggles at the mother's touch, and happiness returned. This new artificial loved one is from Japan and nursing homes there and in the U.S. are seeing how great they work to elicit love and give comfort to elderly residents.

Is this so strange? Do we not believe our pets, be they snakes or dogs, love us and need us? Do we not cherish our special cars, even cry when we must sell them? My mother had a great dane mix that had terrible night terrors. It cried, tossed and turned; until she gave it a Teddy bear. Slept like a baby ever after and carried, gently, the bear wherever it went.

The need to love and be loved is strong in spirits. As long as the spirit lives, so lives the need. When we can not fulfill that need in our family members as they age, maybe we can at least let Paro do our job. A robot. How pathetic have we become?

Fireworks to Celebrate War Mixed with Motown

This year the fireworks in Seattle almost didn't happen. At the last minute a donor came through with some money to put on a show. I hope everyone loved it, but frankly it was not nearly as spectacular as last year. They did play some Motown songs. Not sure what that had to do with anything, but I like My Girl. Here are a few photos...woo hoo. The best part is they ARE right in front of my apt. window, except this year the barge was anchored right behind a curve in my living room wall---my line of view. Partner set camera on tripod and she did get to see them. Oh, and although the rain stopped just in time, it was cold out there. I just have never gotten a big thrill from these events or what they mean to me--war, bombs, shock and awe that I cried through and will never forget. When I hear the loud "booms!" (followed by car alarms), it makes me think of the WTO fiasco here and the police chasing screaming people down my street, while tossing gas bombs, makes me think of the fear huddled Iraqi children must have felt during the Bush shock and awe. Sorry, that is what this all makes me think of.

Ready to Shoot Fireworks From My Balcony

Wish me luck. I am going to try and photograph some fireworks tonight. They are right out side my window on a barge on a lake. How difficult can it be?

(Thanks Lisa from Brass and Ivory for taking a photo of me. I got nothing of you with my fancy camcorder.)

You Have MS. What Do You DO with Your Time?

People often ask me, "Diane, what do you do in your apartment?" One person here even asked my partner if I laid in a bed all day. Okay, that was it. Enough already. I went straight to that person and said, "What is the morbid curiosity with what I do in my apt.?" Yes, I "let him have it and I believe he felt quite embarrassed. But, my tone shocked him so, that I doubt he could tell you today what I do in my apt., when I am not out and about in the facility here---joining in the many activities that are always going on.

Would someone ask Stephen King what he does all day? I AM A WRITER. I WRITE. If you are not a writer, perhaps you do not realize all that is involved. Research takes up much of my "writing time" as does READING. No decent writer is not also a reader of other's writings.

Then there is this blog. I AM A BLOGGER. Again, one must research, especially on a health blog, and again one must read other blogs. sites, health journals---some days I am so exhausted from reading that I am too worn out to post anything of value. Serious crap and I know it, but there you go, my book(s) come first and when my blog stops being "fun," I will end it.

Anyway, since I have soooo much time on my hands, I agreed to help someone set up a blog and to do so I had to set up a new one, so I could remember how to DO IT! Now, I kind of like the new one I set up and it is a good place to jot down some thoughts for my WIP (work in progress).
It is called Plato or Play Dough http://platomind.blogspot.com/

People with disabilities are still a bit of a wonder to the world---"How do they____?" and so on.
I have MS and must use a power chair. I reside in an assisted living facility. Many of the activities I was involved in before MS took its course, I have had to give up. New activities have taken their place. My name is Diane. I am an author with a blog and several WIPs. Enjoy your day!

Learning to Give My First Copaxone Injection, FRUITY!

When I decided to take Copaxone for my MS, Teva (the company that manufactures and sells Copaxone) sent a nurse to our home. She would show my partner and I how to give the daily injection of the drug. We both knew nothing about needles, giving shots, and this was uncharted territory for us.
At the time we were having our groceries delivered by a new Seattle service, that tried and failed to go national. (Though there are many delivery services available now.) We were so thrilled. It started up in Seattle just when we needed it. They always gave us free gifts too, like a loaf of fresh bread, fruits, vegetables--always a welcome surprise! The day the nurse was due was the day our grocery delivery was due. She came in, sat with us at our teak table, laid out her supplies and asked for an orange.

I can only assume that every home keeps oranges around, since she asked for one as if she were asking for a glass of water. Well, my partner can't eat acidic oranges, and I never had bought one in my life, preferring OJ. WE must have had an "Uh-oh," look on our faces, because the nurse rose and headed for our refrigerator, saying, "We will find something that will do."

If only she could have seen our look then, because we both knew our fridge was bare to the bone and we grinned thinking how strange it will look to her. "Here we go," she said.

Sure enough, sitting alone in the fridge (no, we don't drink milk either) were two oranges. It had apparently been delivered from the Home Grocer. The MS Gods were upon us. And that is what we first used to stick a needle in, that had the proper consistency to skin. Reading nurse's comments (and fears) online about how they learned to do their first injection, many used oranges. Fast forward to 2010 and isn't orange the "color of MS" (whatever that means)? Funny. Small world. So forth and so on. Or as Andy and Goober would say, "Well, I'll be dogged."

One shot to the orange was enough for me. I wanted to move on and injected myself soon after.
My partner and I will always remember with laughter that first lesson and the gifted fruit we would never have had without that gift-giving Home Grocer. Those poor oranges.