Thursday, May 28, 2015

Person With MS Moving To Condo

This is one of the only photos of my grandma I have, Edith. she died at age 56. Pancreatic cancer. My mother was 15.

Edith was the oldest of  6.

I wonder what advice she would give me today.

My plan is to use all my savings and buy a condo. I will work with a company called Sure Hands to install a ceiling lift system, just in case.

This is scary. Spouse annd I will be alone. Scary, but our options are limited, our friends are few.

I miss my big family.

Such is life.

Friday, April 24, 2015

How We Might Remember A Friend

Last week a fellow resident died. It was unexpected, as much a death is unexpected can be unexpected in a retirement/assisted living home.

Many of us had memories of "just speaking to him."

What gets me is how differently he is spoken of.

A food server was telling a resident: "I am taking his advice, he always said no one should work so hard, it is more important to rest. Take it slow, he said. I am."  Yes, she is and always has.

He and I ate breakfast together many times. He was a supervisor who had to deal with many slacker employees. We discussed the problem of people who just feel entitled to a paycheck regardless of their work. Hmmm

Then there was the resident who told tales of his love for her. ( He rolled eyes at her and avoided sitting with her when he could.

I remembered this: He was a great guy who spoke often of his daughter and father.

Funny how we are remembered after we are gone.

Tuesday, April 14, 2015

MS KEPT FROM DOING TAX RETURN--AARP TO RESCUE

This time of year I always stressed out over filing my taxes. I always did them myself, for 40 years! And I hate math.

My MS has adversely affected my fingers, each year since 1990 it was more difficult to engage the IRS.

This year a group from AARP offered to help me. I'll never go back! I cried. They were so nice and understanding. "Can I just say how impressed I am with you two? All you have had to deal with this year."

It gave us such a sense of validation.

AARP, love them.

Monday, April 13, 2015

Why Bullies Are So Mean

Bullies come in all shapes and places. We hear about school bullies, and we work with co-employee/ boss bullies. Some of us even married a bully.

Evolutionary speaking, maybe bullies are here to stay.

Do they define us or we them? Do we empower them?

It behooves each of us to stand up to bullies. They like to strike when their victims are alone. It is usually enough to show up. A bully was never taught compassion as a child, or the compassion they were born with has been removed.

Most bullies are just lost, unloved humans trying to release the hurt they feel by inflicting it on others.

Sunday, April 12, 2015

Why Doesn't My Dead Pyschic Aunt Contact Me?

OK, I remembered. A year before moving from The Viewpointe On Queen Anne, I started watching a TV show called "Medium." People told me to check it out, I guess because I have written about me psychic abilities.

Now I have Netflix and able to binge watch. Good grief! Seven years of that show! I skipped to the last episode.

The lead character dude dies. Very sad.

My Netflix connection cut out, so I don't know what exactly happens, but left with fact that dead lead dude never appeared to his psychic wife.

I really want to know why, since Aunt Vi has never appeared in any way to me. She and I discussed it often. Many other relatives came back to me...why didn't she?

Hmmm

Life At Assisted Living Home

This morning a resident and her breakfast in the dining room but didn't wait to be escorted back to her apartment.  We have pendants which can be pressed to call for help.

Somehow she made it all to her correct floor, and they're she sat waiting.  The bridge of her nose was scraped and bleeding. How she made it back correct floor is a mystery to us all.

 After eating my breakfast, I sat in the Clubhouse across the hall from my apartment and listen to my playlist: New York by Jay Z, South Pacific/ various show tunes, Stevie Wonder album and Tapestry.
It is a nice quiet room to sit and watch the clouds out the window.

All of yesterday I couldn't wait to write on my blog, now I can't remember a thing I wanted to say.

Such is life.
 

Saturday, April 11, 2015

Typical Morning at Assisted Living Home

And mornings at assisted living homes usually start with breakfast.

This morning I sat at my favorite table, it looks out onto a busy street, a bus stop, a church, the mountains, tallest skyscraper downtown, and beautiful clouds.  I sat there alone and had my usual.: A bowl of Special K cereal with golden raisins, a glass of orange juice, and a mocha.

There were about 10 other people in the dining room.  I arrived at 8am.

After chatting a bit with the waitress, known here as servers, I pondered at the clouds out the window.
The sun is ready to shine through and I guarantee you that somewhere over Seattle there is a rainbow.

Now I am home, ready to write and start my day.

Friday, April 10, 2015

New New Home and Laws Broken

Well, here  I am again.

Living in a neighborhood of Seattle that I have never been in before.

I have so much to write, but due to lawsuits (YES PLURAL) very little I can say... for now.

Will update this blog as often as I can.

Monday, December 8, 2014

STARTING OVER AGAIN WITH MS

Seriously? I am writing on something so tiny I really need a microscope to see what I'm writing. New technology. I guess we all have to learn how to use it for fall behind or become old and useless antiquated. Anyway this post I wrote several weeks ago on a new app on my iPhone called Word.

Seems easy enough right. I mean all I have to do is talk. I talk all the time so that should Be easy right ?

Well the only thing is riding in talking or do different things. They convey feelings and emotions and thoughts in totally different ways. So we will see how this goes.

For one thing I'm writing blind I can't even see the page!

How can this be progress? Anyway what I wanted to tell you was about starting again. Living with multiple sclerosis is all about starting over. I've started over year after year after year since I was diagnosed in 1990.

Now I am lifting weights with a small piece of rebar about 3 inches tall and weighs about 5 pounds 3 inches tall around maybe 2 inches width.

I will build up my strength until I can left my regular weights again but that may be a very long time. I'm not getting any younger. Surprise surprise.

The new assisted living home I am living at is very nice, very fancy, but very very expensive.

But this is life with MS, it is A life constantly started again and again.

I know what many of you were thinking, hey Diane you are one of the lucky ones you get a chance to have a life you can start again and again. Many of us have one life starts and stops and that's it. Well, let me rephrase this. It is like building your dream house, only to have it burnt to the ground.

Over and over again, is in the definition of insanity in there somewhere?

Well this is all I know now. It gets no easier. Sometimes u am just so tired and BORED with this life of mine.

Sigh, hand me the rebar.



Saturday, November 8, 2014

HERE I AM IN NEW ASSISTED LIVING HOME

Here I am in a new assisted living home.

Here I am wondering if I should run for president of the resident council again.

Here I am waiting on a new wheel chair.

Here I am planning how to walk again.

Isn't there a pithy quote about doing the same things over and over? Insert it here.

Already made new friends here, that is always the fun part, but will I find out in a week or three that they have dementia? That truth is they don't know me from Minnie Mouse?

I am told there is a younger woman here, about sixty. Well, I usually get along better with the older crowd.

Missing place that wrongfully evicted me, still stings.

Here I am.

Sunday, October 19, 2014

Royal Bird: Paralympic Meets Cauda Equinq Syndrome in Wheel Chair Racer

http://www.kptv.com/video?clipId=10680275&autostart=true

Yen Hoang is a wheel chair racer and student at Evergreen High School. Her name means "Royal bird" in Vietnamese, and very fitting as she flies around the track in preparation for a Gold Medal at the next Paralympics.

She is paralyzed from the rare disease called Cauda Equine Syndrome, a rare neurological disorder. 

While she has been in a wheel chair since age four, this fact has never stopped her from wanting to compete and be the best in both basketball and track.

I first heard about Yen from her sister, who is one of my caregivers at my assisted living home.
"How can I not be inspired by her?" she says matter of factly.

Indeed we all should have the desire to do our best no matter the odds.

GO YEN!

Saturday, October 18, 2014

WRITING WITH MULTIPLE SCLEROSIS


I am going to start using my voice recognition technology on this new computer.

Well, 10 backspace facts face the rate OK we were working really well over sentence.

Ed own, OK that was a clearing of my throat.

The A’s and it’s fun to share his newest variance with me.  Oh boy, that says rarely got screwed up.  Again last try, that paragraph rarely got screwed rarely got screwed up rarely got screwed up.  Sigh.  OK

 

And OK, this is going to take forever.  And now you understand, why voice recognition is not easy for people with ms.  Capital ms.  Ms capital.  Her were her all listed writing me crazy.  This in driving me crazy and what a waste of time.

Oh   well, I tried.

Stay tuned…I will try and type normally, but, of course now I am tired. And so goes living with MS.             

Wednesday, October 15, 2014

The Alzheimer's Beginning For My Mom

"I think I'm getting that Alzheimer's," my mother told me over the phone call from my home in Seattle to Fort Wayne, Indiana. She was 59 years old. It was 1987 and senility's name of Alzheimer's was on every TV news report. My 80 year. old Great-aunt Violet could be heard in background saying that she had it too.

"Mom, why do you think that?"

"I keep forgetting  things."

"Like what?"

"Like where I put my shoes."

Laughing, I replied, "Mom, when you forget what shoes are for or how to tie them, THEN you have Alzheimer's! It's just in the news right now. Tell Aunt Vi not to worry."

We both laughed, no phone call ever ended without us both laughing.


I suppose, looking back, Mom had more symptoms than she let on. And I Knew much less about Alzheimer's than I do now.

Tuesday, October 14, 2014

Tilt Power Wheelchair Plus More! Pimp My Ride!

This is my soon-to-be power chair. I tested it out yesterday.

$26,000.00, no worries, I only have to pay $5000!!

The chair will let me stretch out and when delivered, it will be made to fit all 5'6" of me.\

Wow, I remember the days of my DX MS when there was one choice of chair. FDR days are long gone.

Monday, October 13, 2014

Life Expectancy with MS?

My new Microsoft Surface is great, I'm sure---so much to see and do! But, Diane is 57, old for someone with secondary progressive MS...or is it?

One of the first things most of the "MS community searches online is "How long will I live?"
Of course,  no  one knows when an airplane might land on them, but if you mean (and you do) "How will MS affect my life expectancy?" I will tell you what I have learned.

When I was DX (diagnosed) in 1990, I was told my life expectancy was 78 years.

People with MS can live into their 90s like everyone else. Something besides MS will kill you. (even if your obit says "donations to MS Society.")

Yesterday I met a resident and his wife at my assisted living/retirement home. When they learned I had MS, she told me her husband's sister was diagnosed with MS at about age 38 and is now in late 80s, "In wheel chair like yours."

Me thinks, after seeing many MSers at the big "MS Center" in Seattle, that I am lucky to have my mental capacities seemingly un-attacked. (MRIs confirm this.)

If I can continue my exercise routine , eat healthy, laugh, write, love and be loved, my years should be many. Keep living life as you would, just stay flexible/adapt. Everybody has some physical obstacle, be thankful you are not battling cancer, AIDS, EBOLA---really, 50% of MSers won't miss a beat and they can do BIG PHARMA commercials!

Carry on.

Sunday, October 12, 2014

NEW COMPUTER, NO MORE HORSES

I bought a new computer. Do you remember your first?  I can't.

What was it like when cars were first made? I remember my first.

Yes, also remember our first TV set...but can't recall my first computer.

Bill Gates said there would be one in every home--I laughed at that, now many kids get them at school, as we might get a pencil...nope, we had to buy our own pencils.

Technology really shows our age. I still can't cut and paste on this thing and what is MOBI?
Oh, right, I'll Google it.

Gone are the days when we had to search our brains. Engines for that now.

Gone are horse and buggies. Was it so long ago?

My great-aunt Violet in her teens, 1907-2006

Saturday, October 11, 2014

TETRAPLEGIA: MY NEW LABEL IN MULTIPLE SCLEROSIS LAND

Of all the things that living in an assisted living home could do to me, I never thought a few caregiver girls could do this; but, they did.

If you have followed my blog over the years, I have diligently kept to an exercise program of my own making and it always included weight lifting, plus standing and daily attempts at walking with a walker. Since I was diagnosed in 1990, dedication to healthy eating and exercise has kept me living not just surviving with MS. A few horrible months of my regimen in disarray has ended 24 years of success.

Once there was a buff Batista near my home. I stopped for java and conversation daily. He was gone a few weeks and I barely recognized him. He educated me on how long it takes to get back 'in shape' and how quickly the body loses its advances in tone, muscle-building. I was shocked, certainly I understand now. By not correctly transferring me 4-8 times a day, over 4 months, my body became much weaker.

Add to that, the daily stress of never knowing if I might be dropped or spoken to in a demeaning manner, MS was not happy. I am a tetraplegia, apparently I can now enter the Paraplegic Olympic Games! Oh right, must get in shape first. Darn if there isn't always a catch.



Friday, October 10, 2014

MOVING ON WITH MS

Well Howdy Do and I am back again!

I have (finally) a new computer, so here we go!

As 'tis said: Where to begin?! So much has happened since last I was able to write.

We were evicted, the reason, TRUE reason why, still eludes me. At this point, all legal eagles busy, there little I can say. But, be assured, the story will come out.

For now we shall focus on the point of this little blog (reread its heading if need be;) and I must move full speed ahead on my books. I hope to be able to make time each day for my blog. It and all my readers have sustained me through rough times in the past---I owe you what I can give.

My new home is, well, like a palace. How long will I be able to afford it here? Your guess is as good as mine. For now I will enjoy each day.

Nice to be back!

Saturday, August 9, 2014

EVICTED FROM ASSISTED LIVING HOME

Well, this is certainly nt the blog post I expected to ever be writing.

After all the photos I took, after all the adventures I had. after all the deep love I felt for my new home in Ballard---The Ballard Landmark gave me a 30 day eviction notice. I must be out by Sept.6th.

Diane. how could this happen? My fingers are weak, my computer is hot on my lap (bladder) so I will give you the Cliff Notes answer and ask you to wait for my book, article, or TV reports: The Assisted Living Supervisor (an RN I am told) says I need a 2-person transfer and they don't offer that. For my safety and that of the community (?) I must go.

Now. ever since being given that notice,the carers here (young, one just turned 21) have been continuing to transfer me using one person as usual. Make sense? Not to me either.

Before we moved here I met with the AL (assisted living) supr. three times, each time asking if they do pivot transfers, as that is my most crucial need, to get to toilet.

Resoundingly from all aides around and the boss lady, "Absolutely!" and "We do them all the time."

After I moved in, paid my non-refundable $5,000 "community fee" not one person seemed to know what a pivot transfer WAS, even last week the Manager of place couldn't pronounce the word "pivot," jokingly stumbling past it while I corrected her.

The first person to answer my call for a trip to loo back on day we moved in, May 3rd, 2014. dropped me to my knees (and she was one of three LPNs they keep on duty here), only my spouse's race to shove up my knees kept us from a call to Medics to pick me up off the floor. That led to the young LPN shouting such things as I should have been assesed, I didn't belong there and so on. Her tone and continued berating of me ( as I sat, still needing to use the loo. "I don't feel comfortable transferring you." I became furious, "You ar going to leave me here to  poop in my wheel chair!?") was sp unprofessional and frankly atrocious. If I were her boss I'd have fired her. But another carer finished moving me to loo (also not able to do any pivot transfer, just swinging me like a bag of dirt, and the 8story was that it was all my fault. I was trouble.!

Saturday, August 2, 2014

Parrots, MS Healing, Healthy Eating and Making Friends Off Face Book

Here we are in August already! It is a much busier lifestyle  for me at the new joint.
 Photos in no particular order: the first is a, I don't know, poster(?) a Face Book friend made from something I wrote. I really think blogs are a dying breed. They are over-produced or just a diary. Times change fast.
 This is my spouse playing a classical piece on piano at our new place. At the OLD place their piano was warped, out of tune, and parts missing. What a difference. I didn't even know spouse of 35 years could PLAY! She hadn't played in 40 years! Just sat down and off she went--amazing, even though I had done the same thing a few years ago. I guess those piano lessons stick with ya.
 Here is my healed knee. I bought some roller derby chick knee pads, soon to be tried. This has been another set back, but forward is direction we must always set sail.
 Look at this wonderful lunch! Fresh soup, stone ground wheat crackers, cottage cheese and watermelon! When I think of the horrible meals at the former place...just wow.
The most (well, it is hard to choose) wonderful aspect of our new home is the incredible neighborhood--Ballard. We are just a block from, well, EVERYTHING. Out our backdoor is a Farmer's Market each Sunday. I took pic of a parrot there.

Residents have approached me to say that they too have MS. So many interesting new people to meet here. So much better than Face Book, or, I'm sorry, a blog.

My computer is old now and a hassel to use. I'll buy a new one if I can.

Thursday, July 3, 2014

BALLARD BELL TOWER AND WALL ART


Look what I found on side of local grocery store--ART! I just love this neighborgood.
 
Below is bell tower that was here when we lived a few blocks away back in 1992. Since then it has been restored and get ready--it chimes on the hour! What a lovely sound, and now it is just half a block away.

 
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