How to Stay PURE FOR THE MS CURE

Constipation is one of the most common inconveniences of having multiple sclerosis. Since, as Hank Hill can attest, it also can plague anyone for various reasons, the problem has many over-the-counter "cures." Constipation had never been a problem for me. I was VERY regular until I had had MS for about 10 or so years. As I have stated before, after educating myself about my disease soon after diagnosis I tried to play "preventive" care, eating high fiber foods and so on. Still the problem became my problem. First I tried most of the over-the-counter aids. Most of those were disgusting and seemed harsh to my system, thereby knocking heads against my other goal of keeping my body "pure for the cure." (I coined that, FYI.) HEY! The title of a book OF MINE! I must start copy writing this stuff or whatever it is one does--I have been giving too much content away for free--sorry, I digress. Then I read how Katherine Hepburn had psyllium every day and began each day with a refreshing bowel movement. So, discovering that psyllium is the ingredient in Metamucil I began taking orange flavored Metamucil. It was not easy at first, drinking all that extra water one must add to it, but it did the trick. I discussed this new plan of action with my neurologist and primary care doctor, both agreed it was a safe idea. Unfortunately, I didn't like what this new addition to my diet was doing to me--it was working TOO well. My stools were too soft and orange. (Reminded me of the day my neuro wanted me to start Novantrone and cheerfully pushed it by saying, "It will turn your urine blue! Pretty cool, huh!?" "No." See why she hates me?) And they would come too quickly without warning. When transfers need to be made and wheel chairs are involved, that is a disaster waiting (or, not waiting) to happen. I stopped taking Metamucil. But, it got me thinking. Why not just take all that extra water? What would that do? Well, it had same effect that mixing the water with physillim had, without strange color, texture, or speed. How could I have been so dumb? I increased my water intake extensively and have never had a problem again. WATER WATER WATER Another simple way to keep pure for the cure.

Going Vegan at a Seattle Retirement Home

Dinner time at my assisted living home in Seattle. My attempt at going Vegan is plodding along. The chef is working on a vegetarian menu. I can order tofu dinners and veggie burgers. It has been really fun. I did this when I was 24. Dinners were brown rice and soy beans, lentils, lots of fruits and vegetables...that was when I was still running. Good times. Was MS alive in my brain then? Yes, I believe it took hold shortly after my head trauma at age 10. Just took a long, slow progression, so I feel very lucky. I am 53 now, soon to be 54. Looking around this new home of mine, I try to imagine ever thinking I might end up here at 53. Truthfully? I didn't think I would make it to 53. Always thought some health catastrophe would befall me. Thought I would go blind. Believed it so much that I often "played blind," to prepare. Did that help me be nonchalant about it when MS took my eyesight? Aunt Vi, who lived to be 103, used to tell the story of how she thought she would die young. I wonder when she gave that up? I guess I have to give it up. I have crossed over to the downside of the mountain. I didn't die young and am thinking now I have some decades left. Maybe. Regardless, I feel good for a person who is physically very limited. I had some great years. Looking forward with curiosity to this book's final line.

Raise in Social Security Will Go to Medicare.

Once again those of us on Social Security (you know, that socialist entitlement check that so many right winger retirees cash every month as they call Obama a Socialist) are being told there will be no increase. Super duper pooper scooper! My food bill , cell phone bill, cable bill, rent, apt. insurance, medical co-pays, all have gone up, substantially over the past two years and will continue to rise in 2012...where else can I cut? Sam's Club paper products, no Starbuck's, no organic veggies, reuse EVERYTHING, "treats" are off limits, including large oranges from California, greeting cards, postage stamps--thank goodness I still have duct tape to hold together stuff that has broken. I splurged on a couch and now regret it. My great treat of renting movies will be curtailed. Yes, I am whining. I am not homeless or loveless. Money can't buy love or happiness, well, not love, happiness is still debatable. Know what I really hate about my MS? Not being able to buy a lottery ticket every week. $1 bought a day of exciting possibilities. Every time I read about millionaires and Bill, Warren, Donald, the like, I cringe. The Uber-Rich should pay enough in taxes to allow us former middle classites to get a raise in SS, by the way the last raise? I got $40/month more---and it meant the world to me. Where did I go wrong?

Grey's Anatomy Killed My Thrill

Did Grey's Anatomy jump the shark? I am anxiously awaiting this week's musical show, but it better be mind-blowing to calm me down! SERIOUSLY?

Birds Building Nest with Screen Window and Hair

For the last couple of weeks two red breasted sparrows (I think) have been intently ripping my screen apart. A guy and gal couple, leaving with a beak full of screen strips. It was cute at first, but now the hole is large. I put a bunch of my hair clippings out there on the ledge, to give them something NICE to have in their nest...they took the hair AND came back for more of my screen.
I have EIGHT window screens and they only attack this one.

I LOVE my visiting bird friends, but GIMME A BREAK.

John Smith the Store Owner

I KNEW that John Smith was no farmer--he owned a grocery. That man with the beard is my great-great grandfather.

Tried So Hard to Say Good-Bye

Handsome Devil, Isn't He? John Smith

This is a photo of my great-great grandfather's son, John Smith. He sure doesn't look like the usual farmers in my family...and didn't they take a lot of photographs?! Born March 27th, 1876.
Died March 16, 1951

Gone Tax Deduction Fishin'; See Ya Later

Taxes due and I am still stubborn enough to insist I do mine myself. I may leave some post surprises for my peeps, old pix or something I slap together. (Unless there is another crisis Obama has to deal with. IT NEVER ENDS FOR HIM!!)

Until taxes in mail---wish me luck and take care of each other!

(There will be some eye candy at least one day.)

When the Doctor First Says Multiple Sclerosis

My MS beginning is a long and winding road, too long for a post on a blog. But, I had been having disturbing symptoms for many years. As was my family's custom, I took 2 aspirin and waited it out. In my 30s, life was on a roll for me--good job, right city, good friends, but sick partner. I really thought she would be dead in a few years. My problems were put on back burner, until eventually I decided I probably had a brain tumor and my own time was short. When you can pinpoint the damaged body areas right down the middle of your body, right normal, left not, the brain is the logical culprit.

You must understand, at the time, my partner was being told SHE might have a brain tumor (this was the 1980s and those words meant death), and I was getting calls at work almost weekly from some emergency room or doctor about her conditions. Without insurance for so long, her problems had slid until they were severe...had we known...anyway, after playing basketball one hot Spring day, my knee was "giving out" on me. Not enough to knock me over, just "clicking out," I'd call it. So, I looked in Yellow pages and picked a nearby doctor.

We lived, by purpose, just a few blocks from a major hospital in an area of Seattle called Ballard. Ballard was known for the age of its inhabitants: average 75 years. We loved the slow, relaxing pace. It was like living in a small town.

So I visited the doctor, told him about my knee. He tapped it with his tiny hammer and my leg flew up almost hitting him in the face! This seemed to upset him. He poked and prodded, did such silly tests---the knee, the knee---and then asked me if I had been having any vision problems. Hmmm, how did he know? For about a decade before I started seeing bright stars in my field of vision. That first happened after my truck-collision in 1967, every time I put pressure on my head to do tumbles in gym class. The Dr. back then told my mom I was making it up and just wanted out of gym. Truly, I wanted out of gym and this got me out, but he put it in my mom's head that I was lying. Aunt Vi didn't buy it. She believed me. She would go on to believe family to a fault. Anyway, the eye stars came and went, but they seemed to be coming more frequently in the Spring of 1990.

"You have MS," the doctor said. Just like that, no fanfare, no MRI.

"What?"

"Multiple sclerosis. MS. I want you to go across the street to see a neurologist right now."

See a WHAT? Who? multiple what? Is that Jerry's kids thingy? Come on, Doc. He was calling on his phone and telling someone to fit me in immediately. It all sounded so serious. Sigh...I KNEW it. How could I face my sick partner with this bad news? Damn knee.

"What about my knee?" I asked as he was rushing me out the door.

He had a concerned and solemn look on his face. "That is the least of your worries right now."

So, that was pretty much how MS entered my vocabulary. My knee STILL "clicks out" on me and I feel it needs an X-ray...some day. That primary care doctor had no right to say it to me like that. He could have been very wrong. He wasn't though. I had ALL the typical symptoms.

I still think that knee has a problem, aside from MS---NOW, being on Medicare, any X-rays, specialist, surgery, rehab, will cost me an arm and a knee. GAAWD. I often wonder how the knee issue caused many of my walking problems, it certainly caused at least two falls, but once you wear the MS label---it is all because of your MS.

That is my in a nutshell story. I learned the "old school" way. If it walks like a duck and...

What to do with Old Photos. Cat Meets Aunt Violet

Callie takes on Aunt Vi, good luck Callie. Aunt Vi was a sucker for pets. She had a dog, Zippy, that she swore "spoke." She had a parakeet, that became very lonely during the day while she was at work, so she gave "Peppy" (something like that) to a retired friend. Aunt Vi worked as a sales clerk into her 80s. Her obituary, that she composed herself, mostly tells of her jobs.

For all her adventures and travels, her obit was short and humble--jobs. I knew they meant a lot to her, but when I read her obit after her death, I felt the weight of their importance for the first time. She loved her job selling draperies. She even bought all the equipment to start her own business making draperies, after she retired. But, as we all know, life happens and some dreams must fall to the side.

Aunt Vi never let failures stop her. When she fell, she hopped right back up, until the final fall. Until her last 3 years, she seemed invincible. Even at death, there was really nothing wrong with her like cancer or a broken hip. I think life at the nursing home took her down.

How long might she have lived, had things gone differently? One thing is certain, she was ready to go. I am scanning old photos. That seems to be the way to go, but I'm not sure. I think after I am dead a box of old photos will be thrown down some garbage chute. Well, like Callie, they were loved while I had them, to the best of my ability.

Where do you think old photos go when they die?

Why I Don't Get a Cat

People often ask why I don't get a cat. See that darling and beautiful Calico I am kissing? That is why. She is why---Callie.

During my brief stay in Ft. Wayne, Indiana with my partner, we lived in a large apartment complex. Each building was 3-stories high. There must have been 30-60 buildings, with 18 apartments each. That seems large, but that is my estimate. It was located within walking distance to my college and our jobs.

The units were nice, each had a balcony adjoining their neighbors. Unfortunately, our neighbors were three mostly drunk laborers. They took delight in playing their rock music loud and trying to verbally torment us. They were much less disturbing than the many children who resided in the buildings.

One day a stay-at-home mom was laying in the sun, totally oblivious to her children and their playmates. We noticed her there often and the kids would act like crazed mini-monsters. They hit each other with plastic bats, hard balls, rocks, sticks, etc. And her darling son was the beast. He took great pleasure in throwing rocks at birds and squirrels, often killing them. That would bring screams of delight from all the kids. The mother never glanced up.

We planned our move out soon after moving in, but the 6 month lease held us there. I looked out our window one beautiful June day, and there were the monsters, tossing stuff off the balconies of the highest apartments. The "stuff" included what looked to be kittens and small dogs! Looking around for an adult, I saw the beast's mother, eyes wide open, putting lotion on her legs. The animals would scream when they hit the ground and the beast would order his minions to catch them so he could throw them back. "Ha ha ha!" I heard the laughter of our rocker man-boys next door.

It was time for me to leave for work. I started out and called to the mother, "Excuse me!" She ignored me, I moved closer. "Excuse me, Mame?" She slowly looked towards me.

"Your son is hurting some animals over there." (Hold it...hold it...)

"Mind your own business," she said calmly as she laid her head down and placed sunglasses over her eyes. I went to work. What a coward I was at 22.

That night Fort Wayne had a strong rainstorm. We don't get those kinds of strong rain in my current home, Seattle. It is hard to hear yourself think when those raindrops pound against your doors and windows. "Did you hear that?" I asked my partner. We both held our breath to listen. It sounded like a cry...at our door. I looked out the peep hole---nothing. So I jerked the door open fast.

Nothing there, but a small cry, and looking down, there was a small calico kitten, soaking wet. I was sure I recognized it as the one those brats were throwing around. It looked at me, not moving from its sitting position, and mewed with rain still pouring on it.

My partner and I had big plans. We were NOT staying much longer in Indiana. A long trip was in the works. We couldn't take in another kitten. (Our first kitten was thrown from a moving car, had a hernia, slipped from my hands while I was giving it a bath and died. We thought our tears would never stop after Klaus died and we swore "no more cats.") Why did that kitten come to OUR door? Out of all the doors, all the people, why us? And why was she just sitting there? (To wit--why did that moving car throw a kitten out right in front of MY house?)

Well, we took her in and the rest is history. I think getting thrown on her head over and over did irreparable brain damage. She made our life with her a living hell. It wasn't her fault and we tried so hard, but after the 2,500 mile ride in a packed car across country, she really lost it.

Callie: Leaped from a 4-story building and ran away, then wandered around the block attacking strangers. Attacked me. Knocked over a can of paint and made paw prints across the wood floor of our studio apartment. Tore up everything in our apartment. Attacked bare walls after stalking something only she could see and basically lived in a state of constant panic. She sexually assaulted my father-in-law. (I enjoyed watching that one.) She pulled away from her leash after our car died on the highway in Montana, then attached herself to the front wheel of a nearby truck. Took my partner and a police officer to pry her off.

She reminded me of an Alzheimer's patient. She begged to get away, yet when she was allowed to go she ran like a crazed cheetah, then stopped frozen a few yards away and stared, scared and shaking. I was covered in scratch marks and teeth bites. Finally I couldn't take it anymore.

At 2AM I took her to a place advertised to take in unwanted pets. I placed her in a box with holes in it and she went her usual crazy. The lady who took her saw how upset I was to not be up to caring for Callie. She took the moving box and said softly, "It's okay. I understand."

What ever happened to Callie? I hope she found a home with someone who could be with her 24/7---her fear/trust/abandonment issues had to be huge. Today we probably could have given her drugs...Oh, Callie, I am so sorry. We did the best we could. Why did you choose OUR door?

Mom with Chicken in Big City

When my mother visited me in Seattle, soon after she happily took an early retirement. I looked forward to showing off my big city life to her. She had spent 95% of her life in Fort Wayne, Indiana. Mom loved Ft. Wayne. She wanted to marry a farmer and live on a farm. Absurd, considering how little housework she ever wanted to do. Her DREAM was to marry a prince and live in a castle. I digress.

Where did Mom want to go? "Do they have chickens here?" I found a few at the zoo.
"Can I see a bum?" I showed her a homeless man on 2nd Ave in downtown Seattle. She would have been content to watch them all day.

As far back as I can remember, I wanted to live in a big city. Go figure.

Did YOUR mother have any effect on where you wanted to live? How did you end up where you are?

Pony Named! Bicycle Deliveries Circa 1800's

Pony Express, remember reading about them in school? I compare them to those crazy-fast bicycle delivery guys. (I've never seen a female do that job, hmmmm) But, the Pony Express made deliveries that covered 1,966 miles from Missouri to California in just 10 days!

Eighteen year old, Richard Erastus, "Ras," carried the first mail west from Salt Lake City in his leather mochilla. His horse was "Lightning," and she galloped to the first relay station (22 miles) in just one hour and five minutes!

That was the horse my new stuffed friend was based on. Soo...after my partner located the tag which told Lightning's name and story (I was just hugging, I wasn't looking for a tag---no judging!), my pony has a name already!

Lightning G. D. Standiford it is! Thanks for all your input.

My New Pony Can Soothe the Soul

I know it is hard to feel happy right now with all the world disasters, protests, deaths, but a man came over to my home yesterday and gave me that stuffed pony! It really made me smile. The kindness of strangers never ceases to delight and amaze me. I will name the pony George or Daisy. Weigh in. Sooo soft.

When life seems too horrible to bear, we must find the little things that make us happy and focus on that to allow our brains time to process the rest.

Let it All Disappear

In Wheelchair Annette Funicello Survives Fire

One of our MS celebrities (and we don't have many), 68 year-old Annette Funicello was taken to a hospital with smoke inhalation from a fire at her home in California. According to her ex-husband, she was at home in her wheelchair with her husband and an aide when the fire broke out.

What to Do in an Earthquake in a WheelChair

Seattle sits on the San Adreas fault, yes, I live in earthquake territory and we are quite overdue for "The Big One," her on the West coast.

For people in wheelchairs, little has changed in my 29 years of life in Seattle---we are on our own. Oh sure, some of those people have people and that is a game changer, but many of us have no people. No matter how I have tried to educate those in charge of emergency preparedness for Seattle, they simple don't get it or find the problem of helping us too overwhelming, help the majority and all. MS will always place me in a minority and the truth is the minority often sacrifices for the majority, otherwise humankind would not have come this far.

So what do we DO in an earthquake? We sit and wait. We try to stay calm, even if we end up on the floor for hours. I have been in rolling quakes here and no way my power chair would be going anywhere, except maybe on its side. My lift chair might throw me out.

The last and largest earthquake I was in was the 6.8 Nisqually back in 2001. Back then I was working from home and used a cane and scooter. I was at my desk. My partner was home that day because our buildings elevator was broke. She just sat on the floor, though I told her to get out of the building (unsafe for her weak legs, but the outside stairs might be a sit and push option for her), she refused to leave me.

I held onto the sides of the den door way, and noticed my file cabinet draws were opening but no wall pictures were falling--we would make it. It seemed to last so long, but was only 45 seconds. I couldn't keep standing and finally threw my body into my nearby desk chair, where I held on another 10 seconds. (Had I known it was about to end, I would have held on.)

The wonderful thing about the earthquakes so far, is that they didn't last long and there were no noticeable aftershocks. My 62 story office building was somewhat new and built to sway, as was the apt/retail complex I had lived in. Where I am now is wood and 20 years old, but it IS on a hill, no tsunami to worry about up here. Up here the worry is sliding down into Lake Union.

Many "hills" in Seattle were man-made and built on sand and dirt of who knows what kind.

Even in fancy, earthquake-proof buildings, there is nothing for a wheelchair user to do but sit tight. I can't "jump under a table," and I only have one table in my apt. anyway, with chairs around it. People without disabilities will say, "You could fall under that table there." Well, I suppose, if the fall didn't knock me out, if I could crawl, IF I could MOVE THE CHAIRS---it is the details they don't consider.

I did pick up a hard hat from my job with the city electric company, but out of anger with them I threw it away one day. (Or gave it back...)

My best and most real advice I can give to a person with a mobility disability is to stay calm. Read what you can to secure your home, keep reachable water around and a tool to open them, pretend it is happening and see what measures you might take to improve your chances of a safe ride. Mostly, stay calm.

Lupus Death by Boss and New Drug More Study

At my city job there was a woman who had Lupus. When I first met her, she was introducing her friend around to my co-workers, a homeless man she invited in our office building for some warmth and donuts. She probably got in trouble for that, but she wouldn't have cared.



She filled her cubicle wall with the precious gold star type stickers we got whenever we took 100 calls a day. (Yes, I worked in a kindergarten class, or so it often seemed. I would have preferred a compliment from management or, gulp, MONEY.) That 'self promoting' was seen as 'showing off' by many, probably many who never took 100 calls a day their entire career. Sometimes I plastered my cubicle wall too, even trash bin dived for many cheap stickers thrown away by seasoned, older workers who got the joke and were not laughing at the silly gold stickers. But, Marguerite was sincere and that made me a little sad. She needed that confirmation.



One day we had a stupid "off campus" meeting, several blocks away, all down hill. (The city had lots of buildings, but not much room in any one building since they were pretty aged.) I was using my cane at that stage of MS. She asked if I would like a ride, her car was in the building's garage. I jumped at that.



When I made it to her car, she talked about (OK, let me say right here, for all my MS peeps, this is what writing is like when you must use a power chair---you write a memory and suddenly you must drop everything and transfer quickly to the loo, now you are back and have to remember the story all over again. I can always tell when a writer actually WROTE their biography/memoirs, or just had someone else do it, when I see them go on talk shows to promote it. That is why I reviewed Portia de Rossi's book, you live it all over again and that comes through in the pages. So...now I have to "re-live" that moment in the car...ugh. NOW you understand why my one-finger, MS sculpted book about my job has taken so long to complete.)

her son and how wonderful he was. His pictures were placed on her dashboard. He bought the car for her. She was a beloved mother and that was no surprise since her heart was bigger than Mt. Rainier. I think one of her sons had a health problem, maybe learning disability...anyway, when we made it to the meeting place building she got out and opened the trunk to lift a wheel chair up. It was a manual and just then a co-worker who had walked to the meeting, raced over and pushed her the rest of the way. I didn't understand. A minute before she was walking just fine. See, disability is new to people with diseases that disable; so, I never can't relate to those who question why *I* look so good, but have a disability parking placard. I was YOU once, strong and clueless.



During our ride back she told me how she was able to take 100 calls a day. Just about everyone but the supervisors knew she wasn't REALLY taking that many calls. We can always tell---they are talking to friends on the phone too much (did I say I worked in a call center for the city of Seattle?), wandering around too much, in the restroom too much, long lunches, in late out early and their names were rarely seen on orders, plus they always asked other co-workers too many simple questions. This knowledge made her "awards" display all the more ridiculous and pathetic. Unlike others, she took true care of the customers whom she DID talk to, and that means a lot to me.



She told me the "mute" button secret. (What? We had a MUTE button?) Reps would mute their phone and let a call come through, customer hears nothing, hangs on for awhile, then hangs up. This is then counted as a call. A rep can even be away from their desk for an hour as their "stats" count upwards. A lot made sense after learning this, callers saying they got dead air and so on.

I could suddenly pin point a dozen who were doing this, it all made sense now. While it made me angry, I couldn't feel angry at Marguerite. She was really struggling with her Lupus and something I had never heard of called Fibromyalgia.



When my dept. (electricity) merged with the water dept., all hell broke loose. The rumor was that the water dept. boss was real strict and not afraid to take on the union and fire people who screwed around. The rumor also was that we would be getting a big fat raise, since we would handle ALL the utility calls now. I was thrilled at both aspects. Even as a union shop steward, I told people straight out, "I am not here to support anyone who refuses to do their job." But I did support any union member when management wanted to "talk to" them.

Tensions ran high and many former City Light employees were called into the office of our boss. Rumors flew like gnats over rotting bananas: the boss wanted to keep former water dept. employees and get rid of as many light employees as possible. Marguerite was called into the bosses office.

Marguerite was scared to death, she just couldn't lose her job, her family depended on her! She looked for a shop steward to accompany her. I was angry about the entire handling of the merge and the heavy-handing antics of the new water bosses. I wanted that steward gig. Marguerite wanted me. My reputation of standing up to the new bosses was firm and well known. There was just one problem.

On that fateful day, I was at home recovering from cancer surgery. In fact, there were no other shop stewards on the floor that day and Marguerite went into the office alone, coming back out in tears. What was actually said, few know. (All the water-merge bosses left after merge was completed--duh--it was a disaster.) But, it was told that the boss threatened to fire Marguerite.

That night Marguerite had a major heart attack and died. A "complication from Lupus?" Right.
At her funeral, feelings of hatred and anger filled the grief. We took up a collection for her family, but many would say, "The Water Dept. Director killed her."

When I think of Lupus, I think of my friend Marguerite, and I will wish I had been there for her as she had "been there" for so many others. She rarely mentioned her Lupus and didn't want it to upset her children or co-workers.

The first drug in 50 years for Lupus was approved yesterday. Marguerite was African American and the new drug has not shown that it helps that race. Swell. But, studies will continue and African Americans should not be kept from trying it, as the study was not 100% conclusive in this area. I am hoping Benlysta will soon help all Lupus patients and Big Pharma can begin to polish their tarnished reputation.

When I am 90 I Shall Wear Pigtails

Louise Bourgeous

Normal and Worry as Fitting In is so Vexacious

Now, of course, "normal" is open to interpretation, but to me it was always people in the suburbs. They seemed so perfect. Cute little houses, well-manicured yards, everybody looked the same, had friends over who looked like them, it was quiet at night, the streets and sidewalks were clean, it smelled pure, men had jobs and women took care of house and kids. So normal.

Once in awhile my great aunt Violet would drive out to visit Wilber and Betty, two relatives of her longtime companion. I always felt a bit out of place at their home.

Once in awhile my mom would drive out to visit her brother on his farm. Everybody so normal there too, and 4 normal kids. a normal farm. Yes, it all seemed a bit too perfect.

At these normal places, everyone always seemed very happy. From all accounts they all were. So, what makes me feel worried?

Perhaps it was the unchanging sameness of the life I saw there. Perhaps it was the apprehension that *I* would be found out as not normal. In the city, there was more crazy. I like crazy---feel at home there. Now, if pain, emotional or otherwise, is involved--that is a whole other crazy that needs a doctor. But, your average big city, political, religious, sexual, comical, livin' free crazy is okay by me, and way better than any normal I know.

Maybe the fact that I lived through the 60s and 70s makes me feel this way. Back then all hell broke loose in the 'burbs and society's idea of the American Dream got a swift kick in the caboose. People started reexamining their lives. Baby Boomers were growing up and wanted a different life with peace, love, sex, drugs, rock n roll, and---hold it---individuality. All of which they had...for awhile.

When they hit "never trust anyone over 30" 30, the catcher in the rye started dropping children like hot coal. Those fallen children don't worry me. The people who worry me never even walked into the rye. ~~~~~~~~~~SCARY.

Laughing with MS Can Kill You

One of my dearest friends at my city job used to make me laugh so hard. I usually "laugh on the inside" (and I laugh A LOT--I think life is HYSTERICAL), but she could really uncap me. I finally had to explain that laughing can kill a person with MS.

Did you know that? It's true! Our brain area that controls emotions starts igniting like crazy sometimes when we have a good, hard laugh. "Emotional Lability" starts the nerves rolling and our sometimes compromised breathing adds to an inability to "catch our breath."

It only needed to happen once to scare the heck out of me and I know when to stop now, or at least when to tell others to stop making me laugh. (I say that to my partner quite often, and she, as my mom always used to, says, "You're making your own self laugh." I suppose that's true--but they both can be so darn funny!!)

I read about this when I was diagnosed in 1990, but don't recall hearing much about it since. My cousin used to laugh and start kind of, I don't know, gasping inward, her body said she was laughing, but no sound came out. Once Aunt Vi had us all in stitches and Virginia (my cousin) laughed to hard she fell off her chair. She was a rather large woman and in between our tears of laughter, we realized she was in trouble! Things turned serious as the adults tried to sit Virginia up and get her to breathe.

So...I try to control my laughter, JEN. Because I don't want to die from that MS complication. (Though it seems it might be a fun way to go...but not so much for your loved ones.)

Book Review: Untied by Meredith Baxter--Dealing with Addiction, Low Self Esteem, and Hollywood Backstage

First, I really enjoyed this book. Second, I really loved the TV Show Bridget Loves Bernie. It was the big break for Baxter and was a romance about a rich Irish Catholic girl and her poor Jewish guy. Their family doesn't want them together. Romeo and Juliet on the small screen for laughs. Neither Catholic or Jewish folks were laughing much. It didn't last long, but the stars, Meredith Baxter and David Birney fell in love and got married. I loved that, being an incurable romantic.

This book tells the true story of less love and more disaster in Baxter's life. After several children and marriages, she found that she really was her true self with lesbians. At 63 she now lives with her gay partner of 6 years.

Third, I love reading about Hollywood, and the real lives of actors. I wanted to be in the acting profession since I was five. This book is mostly a revealing story of an actresses life after "cut!"
Lots of stories about other famous actors, her roles on Family and Family Ties.

Fourth, the whole relationship ordeals, the psychologist in me wanted to know.

Fifth, the gay thing---women who finally decide they are attracted to women after they are in their 50s is fascinating to me. Now, Jodie Foster has never "come out," but no one will be surprised when she does. Meredith Baxter really surprised me. I had to find out how that happened. Her children were like, "About time," mostly they knew, but how?

So the gay stuff is a very small part of the book. It was all so interesting to me though---relationships that go suddenly bad, dysfunctional families, being punked during a live TV show taping, agent shenanigans, Hollywood shrinks---I enjoyed it.

Also, I am always curious how much help these actors get in the writing of their books. (A LOT)

Untied by Meredith Baxter available at book sellers everywhere. If you are a woman struggling with an unhappy marriage, or alcoholism, I suggest you get it

A Cheap Date

My friend tells me I can get a cooler (and by that I mean it gives off less heat) laptop now. I have been saving $15/month for past two years. My friend is one of those people who can always find a bargain--opposite of me, I hate shopping, in and out is my style. But my friend can find a $200 outfit for $25--no kidding! She buys my paper products at Sam's Club and is helping me lower my phone bill. (I had 5,000 roll over minutes...had NO IDEA what they were--DOH)

So soon I will spend more time on my book and less on blog and Face Book.

FACE BOOK! Who knew?! Great place for a disabled wrote like me to meet new characters. And the DRAMA! I have been "blocked" at least twice already, just for giving my opinion! LOVE IT. People, so unique, so interesting---I may be hooked.

Sorry if I am not getting to all the blogs I want. Still hoping to get my new glasses soon, then LOOK OUT!

Oh, my friend found Rice Dream and dates for 50% off what I was paying!! She amazes me. I did not get that gene.

I Can't Keep Up with Myself

When I had my two college age nephews here, some years ago, I was fascinated by how youth molded them. Age has always been of great interest to me and I never knew my place within it.

What I noticed was how easily they accepted change and how fast they were to try new directions. Then I looked at people in their 40s and 80s; with each decade there seems to be a lessening of this brazen "leap into the freezing water" WHY NOT, attitude toward life.

So I have made it my goal to keep that younger spirit with me as I age. Your inner spirit can greatly effect your outer actions, including how you look at your chronological age.

It is a bit difficult to keep up with myself at times. Since moving to an assisted living home 2 years ago I have: Had a short story published in a book, kept a blog, continued writing two other books, had a poem published online, learned Bridge, taken my first steps in years, doubled my arm weights, become president of the resident council at my home, become chair of the building and grounds committee at my home, made many good friends, played the piano, sang before people, entertained fellow bloggers, discovered lost relatives, eaten new foods, increased my D levels to normal, upped my good cholesterol, pedaled an exercise bike every morning, started writing a musical, begun a Face Book page, learned to Tweet, and more I can't think of just now.

How do I feel? Fantastic! I feel young of spirit and look forward to each new day. My MS is an inconvenience. I am determined to keep seeing it as that and nothing more. But, some days I look at all I want to do and scream inside, "I CAN'T KEEP UP WITH MYSELF!"

Almost like watching someone else in a movie. Fascinating.

MS in Gay Marriage that Changed Obama's Mind

Telling Your Children About Your Multiple Sclerosis

What is the first thing I do when I meet a new person? I try to get to know them. Same goes for children. After you have fed them, cared for them, loved them, laughed with them, played with them, read to them, introduced them to your world (If you play piano, you play for them; if you are a basketball player you buy them a basketball), listened to their thoughts and wants, discussed life, and explained how school works---it is time for their 5th birthday---they are now young people. They will make decisions, explore on their own, attempt to dream and pursue those dreams.

You turn 30 and are diagnosed with MS. How do you tell your kids? Only you can answer that and that answer should be based on all you have learned about your children. The following are my suggestions: Age appropriate explanations, but do explain. 'Mommy doesn't feel good" will not cut it. Depending on the ages of your kids, you may have to have one on one talks.

Put yourself in their shoes. What are they seeing/hearing, and what would YOU want to know?
A cane appears--that shouldn't happen. In my opinion, MS should be a family affair from the start. Make it fun and okay, not sad and scary. Picking out a cane together can be fun. Involve them now, the sooner the better. I am hoping that by age 5, you have introduce them to the fact that some people have disabilities. It will all be much easier than you think..

One day at my job with the city of Seattle, I entered the elevator of my 62 story building in my scooter. A mother and little girl were inside. Within a minute, "Why are you in that?" (She looked to be 6 or 7. I LOVE these "awareness" opportunities!)

Surprisingly, her mother was nonplussed by her daughter's direct question--YAY!

"I have MS. It makes my legs sick, this helps me move around."

Again, without missing a beat, "What is MS?" Her mother bent down towards her saying, "You know Tamika, it is what you are collecting money for at school." Then she looked up at me and smiled--"They are having a bake sale."

Tamika looked at me, "We made cookies."

"Well, thank you very much."

"Will it make your legs not be sick?"

"It will help a lot. Meeting a nice girl like you is helping me feel better right now."

The elevator opened and we went our separate ways with Tamika waving bye to me.

As your children get older, they will understand more. "Disease" is a complicated word. "Sick" they will know.

Some people hide their MS as long as they can. Maybe as a parent you will choose to do that. But like the sex talk, ask yourself: Who do you want to tell them about it first?

Your family, friends, you have a right to feel their love, to accept their help. I told my co-workers the first day I was back after the diagnosis. MS is not a singles match, it is a team sport. Children have a huge capacity for accepting others just as they are. If you have done your job as a parent, you kids will know empathy and enjoy helping others.

How did you tell your kids about MS?

What Death is Like in My Retirement Community

This is a frog holding a magical ball on the patio of the retirement community I live at. It has been very cold, down into the 20s at night, but the birds are swearing that Spring is nearby. The large patio will need to be planted and the many flowers cared for--fun!

One thing that is not fun is saying good-bye to neighbors who have become like family to me. Another woman died this week. Usually when it happens, there is no warning, no chance to say good-bye. I don't know how long I will live here, but I am the youngest and will probably experience many more losses.

At my city job there was the occasional death. One woman was struck by a car, one young man committed suicide (shooting his beloved cat first), one died due to AIDS, several cancers, a heart attack...now that I think about it, I guess I did have to deal with those sudden losses too.

Except AIDS, it is a slow killer, or it was back in the '80s. Gosh, those were terrible years.
Now, at an advanced age, it should be easier, right? It isn't. Family leaves you alone, doctors want to help younger patients more---shouldn't the oldest among us be revered, respected and loved? Right.

Spring is coming. Flowers will bloom again. baby birds will visit me on my balcony. And the band plays on.