I was DX with MS in 1990. I work for the City of Seattle for 48 years with MS.
Starting as.most do, I was relapsing/remitting for abut 10 years. Now I am secondary progressive.
I am 58 years old, was married in 2014 after a 35 year courtship, I guess she can say, well when the law caught up with the times we had our same sex marriage at an assisted living home that evicted us.
When I first met my wife, she was the unwell one. We tend to go back and forth. We struggled to help each other and do the best we can.
Unable to continue helping each other, we moved into an assisted living home in 2008. Thus began our adventures in hell on earth. We got a real education in a new aspect of life in America.
Now you're up to date. I began this blog in 2007. So much has happened in the last 12 months, I will post as often as I can to share these adventures with you.
Assisted-living homes, lawyers, lawsuits, liars, attacks against my body, and many adaptive devices for people with disabilities, and figuring out a way to live on our own again.
In two days we will be moving out of the assisted living home where we currently reside and into a condo of our own. I will attempt to document this move, route battling with my new computer.
Tomorrow we will have our friend over to box up everything. We had to leave behind so much when we moved from the place that evicted us, or should I say illegally evicted us.
The stress of all this has been great and has affected our diseases in a very bad way. One has a choice either to quit or start again.
Quitting is so boring.
Thursday, July 23, 2015
Posted by Diane J Standiford at 10:40 AM
Tuesday, July 21, 2015
My biggest obstacles right now is walking, moving from power chair to loo and back.
Since I live in a high class assisted living home, they are very concerned that I not fall. Because of that mentality, I mean any fall will look bad in their state reports, so I am unable to. attempt my own transfers. If I were to fall, they would make a huge deal out of it, including sending me to rehab or evicting me.
Therefore I have been stymied in any attempt to use my arms or lower body in this fashion. This is a huge detriment to my MS.
They SHOULD be encouraging my movement. That will never happen. There is less money for them if I can transfer myself.
It is obvious I must leave or, and I don't mean to be overly dramatic, die. People with MS must move.
When I realized that most of the caregivers here (they call them "Care Managers" uh-hem) do not know what MS is, and have no experience with a standing pivot transfer is, I had to figure out a way for my body to bear weight.
That was resolved with my $6,000 purchase of a Rifton Tram a lift device made by Mennonites in Pennsylvania. A wonderful product ( no, insurance doesn't pay for it) and it gave me a chance to not only bear weight but measure my improvement!!
It involved my spouse moving it up to me. Then she hurt her leg--a nightmare I will post about sooon
Her leg has healed and we. are into our own condo soon. My body is starting at square one.
Here we go.
Posted by Diane J Standiford at 10:59 AM
Saturday, July 18, 2015
Hi all! I am moving again.
My attempt is to document this move and show you that someone with secondary progressive MS can live independently.
Living in assisted living homes these past twelve months has been quite a journey; one that I would not wish on anyone.
I hope you will stay tuned
Posted by Diane J Standiford at 10:39 AM
Thursday, May 28, 2015
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.
Posted by Diane J Standiford at 10:59 AM
Friday, April 24, 2015
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
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
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.
Posted by Diane J Standiford at 9:55 AM
Sunday, April 12, 2015
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?
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.
Posted by Diane J Standiford at 10:40 AM
Saturday, April 11, 2015
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.
Posted by Diane J Standiford at 9:39 AM
Friday, April 10, 2015
Monday, December 8, 2014
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.
Posted by Diane J Standiford at 6:39 PM
Saturday, November 8, 2014
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
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.
Saturday, October 18, 2014
Wednesday, October 15, 2014
"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 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
$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
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!
Sunday, October 12, 2014
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?
Saturday, October 11, 2014
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
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!