Tuesday, April 1, 2014

Assisted Living Home Move with MS

Well, my "New Life" posts come to an end. I will move by end of May to new home and have new stories to tell.

I am so stressed out right now, not knowing what awaits me at new home, arranging the move, doing my taxes---ugh.

I'll get back to my blog when life slows down.

Take care, all my visitors!

Monday, March 31, 2014


My birthday is today. I am 57 years old.

On my birthday I like to reminisce about past birthdays, but I could only remember 3 of them until this morning. My 33rd birthday was wonderful. I was settling into a great job in a city I loved. My apartment was large with a great view. It was located two blocks from the Ballard Locks in Seattle, Washington. My partner hadn't been rushed to a hospital in many months. We loved walking to breakfast at a neighborhood restaurant, then over to the Locks, which connected boats from fresh water lakes to the salty waves of Puget Sound.

There was a marina there, full of sail boats ready to hit the water, and inside a government owned botanical garden park full of tress and flowers from around the world was a salmon "fish ladder" which allowed the salmon to make the return home to mate. It was just a magical, wonderfully relaxing place to sit and breathe fresh air, delicious scents of the most gorgeous flowers, and to people watch.

Life was good, so good, almost perfect for me.

My loving partner of 11 years gifted me with something I'd wanted for a long time: a yellow Schwinn 10-speed bicycle! So many terrific areas to ride in my neighborhood, heck, I could ride to work! It was an exciting time. I was 33 and feeling great.

The first place I rode the bike to was the Locks. It was a clear day, sunny, just perfect, but something was not right with me. Had I forgotten how to ride a bike?! They say you never forget. Maybe the bike was not calibrated correctly...it seemed to move...off kilter.

Just to be safe, I rode home on the large sidewalk. This was a popular area for bikers, but few would be on the sidewalk. There was another 10-speed coming my way though, but we had PLENTY of room---I rode directly into him.

"Hey!" He shouted, as he struggled to stay on the bike. He did, and glared at me as he passed by.

I stopped, almost falling myself, and was dumbfounded. I actually turned into him!

One month and 15 days later I would be diagnosed with multiple sclerosis (MS.) I never rode the bike again, or any bike again. My balance was off and I couldn't even sense it.

Yes, MS made my 33rd birthday very memorable, once I remembered it. I can see why my brain chose to forget that day.

Sunday, March 30, 2014


My SPMS (secondary progressive MS) was going along pretty fine until the last 12 months.

First I was DX with Bell's Palsy on my 'good side'--my right side. It really stopped my walking accomplishments pronto. I had been on a roll, making it across my living room floor. My standing time was increasing by the week! Then BOOM.

After the Bell's Palsy, I caught a bad cold, then (and who didn't see this coming, what with my T-cells working overtime!?) I had a MS relapse attack---my first in a decade, or longer, I honestly lost track.

My right side started going all numb, my right hand was not interested in functioning at all. It was hard to eat or drink since the nerve connections were so confused by now. Good Golly Miss Molly!

Things have settled down, a 3-day dose of Solumedrol calmed the inflammation down, but all those months I had to have caregivers help me move, stand, until now my muscles are DYING to start back and go all atrophy on me! DRAT!

Each day I am starting over again, back to working what I can. My plan still is a solid one and I see now that it needs to be constantly practiced, I guess for the rest of my life. And why not? It is not a bad way to live---keep using what works and build around weak or compromised body functions.

It all goes back to babies, crawl until you can hold onto something and stand, then start walking, fall, get back up, rinse, repeat. Life.

After 5 years post MS diagnosis (DX), I was diagnosed with ovarian cancer---two surgeries later, started over again after laying in bed for weeks. It is always nice knowing you can work to improve SOMETHING. Whether it is eating healthier, visiting with friends, petting your dog, SOMETHING can be done to improve your body and mind.

But, mixing other illnesses with MS is a real Putin buster. Sometimes starting from scratch is not the worst thing. I have added peanuts to my diet and met new friends on Face Book.


Saturday, March 29, 2014


It is all so ridiculous, really. I was diagnosed with MS in 1990 and I find no better "awareness" of this chronic disease than there was almost 25 years ago.

Oh, there are more books about it, more blogs, more people on social media sites who tell their stories, but enter the average person's life and "Is that Jerry's Kids disease?"

My assisted living home has ONE other person with MS. And what I am about to write is based on what I have read from 1,000 Face Book 'friends,' Twitter MSers, doctors, nurses, physical therapists, cab drivers, grocery clerks, authors with many letters (PHD, BS, etc)  behind their names, and family members---still so many laughable ideas about what MS is.

It makes me so sad for those who do indeed suffer from MS. Yes, suffer, many of us suffer. While I once fought to get "disabled" instead of "handicapped" into our lexicon, so many people with disabilities decided they didn't want the label of being disabled, well, I give up and so has America.
"Handicapped" is the most used word and I don't have a problem with it. Nobody labels me anyway. Only YOU can allow yourself to be boxed or labeled. But, I swear some people don't want to say they have MS.

Worse than that is the many who diagnose themselves with HAVING MS! Why a person would want to do that is beyond me. They have a pain or numb foot, Google it and VOILA--MS! I guess, or some doctor Googles it. 

AWARENESS? What a joke! We are not even aware if we HAVE multiple sclerosis!

I hear this so often it makes me want to throw up: "I have progressive MS." Then they go about telling of their latest walk or trip by plane to Disneyland, oh, and if I DARE inquire when they were diagnosed (DX) they refuse to answer or say 10 years ago. NO NO NO

There are stages of initial DX of MS, the rarest is primary progressive MS. And if you get that DX you will not be on a plane for a fun trip any time soon. In fact, you will likely be dead in a few years. There will be no blog from someone with PPMS. (The exception is if you were misdiagnosed to start.)

What people MEAN to say is they have progressive MS, well, DUH, THAT is the most COMMON form of the disease. Most of us will progress towards disability, some faster than others, but that is the disease you have. AWARENESS? So many people with MS don't even understand the different stages of the disease.

The "Walk for MS" always cracks me up. Yeah, I did one in the first years when I could still walk that far. I walked for AIDS. I LOVED to run and walk. Now I need a power chair. But all these walks sure make people think that walking with MS is totally doable and let's combine the two to raise money! "BOWL FOR MS"

How about some real awareness of how this disease destroys lives? Do you think maybe people might want to give money to help end suffering? The photos from the "Awareness" Walks show happy, smiling, laughing people--PARTY TIME!

The biggest advancement in MS is diagnosing earlier, ergo, healthier people who will experience longer remissions, still walk and run for miles and they will attribute their good health with some diet or exercise or their POSITIVE ATTITUDE!   sigh

Sigh, because that was me in the 1990s. Today I would have been diagnosed at age 10 or 25. At 25 I had all the text book symptoms, but I hated doctors and forged ahead until I got over whatever was bothering me. (I thought I had a brain tumor, but my partner was ill at the time and, well, priorities.) It wasn't until age 33 that I was DX MS.

Anyhoo, good luck finding a healthy person who can tell you what MS is. Good luck finding someone with MS who is aware of the history of their disease from 1975--2014.

Saturday, March 22, 2014

Thursday, March 20, 2014

No Americans with Disabilities Act Adherence or COMMON SENSE

All this stuff loose in front of me during $50 ride to doctor. Only oxygen even had strap. When I mentioned it to driver, he snapped. Big fight ensued with me getting boss of cabulance company on 3-way. Driver didn't shoulder strap me either.

Must my life be daily fights?

Sunday, March 16, 2014

No Booze for Residents with MS?

One of the new assisted living homes I am looking at requires a form for their care employees. It asks basically if I have any dementia, food requirements, and so on. It is the kind of form I have been given where I currently reside (over 5 years now!) but I just toss them away. (You would too if you were me and lived HERE, but that is another story.)

Instead, I took the form to my MS doctor and she looked up at me while completing it, "You should not drink alcohol."

"What?" I noticed a question about whether or not I could drink. Now, I never have had more than one glass of white wine at "Salty's on Alki" during an anniversary dinner over-looking Elliot Bay. This fact turns normal faces into shrines of unbelievability.

"People with MS shouldn't drink." (My brain shouted, THANKS FOR TELLING ME AFTER 24 YEARS)

Laughing, I said, "It's funny because I don't drink and have never smoked pot," she interrupted--
"ME EITHER!" We laughed as I continued, "But Happy Hour is a big deal at these retirement home places." (Can you HEAR me, Doc? I will be ostracized if I am unable to imbibe AND now the carers will see your form answer as, "Watch out, she drinks.")

Now that I have been told I shouldn't drink---I want to drink. Since childhood, that is how I roll.

Must Google a good beverage. Happy Hour is at four.

Saturday, March 8, 2014

My MS Skull Scar: Head Trauma and Multiple Sclerosis

Yes, head trauma can cause, or at least trigger multiple sclerosis. I was surprised that some of my blog readers did not know that.  Here is a link to many scholarly articles regarding the MS connection with head trauma, and you can Google the issue for hundreds more.

While just about everything "MS" remains a mystery, and we all probably 'got' it our own unique way, I have NO DOUBT that when a pick-up truck hit me, MS joined my life forever.

I was 10 years old, riding my bright red bike to a park near my home, pulled out of a gas station driveway, looked both ways down my small town Indiana street, flat and clear of cars, next thing I knew three teenage boys who had been sitting on a Goodwill dumpster yelled out, "STOP, you hit her!" I also saw a pick-up truck with ladders on side come to a halt, its back lights red. But I NEVER saw it before, nor did the boys see the actual collision, NOR did the gas station man right there see anything but the aftermath. Strange, right?

My head was stitched up. I was sent home. I never cried, actually enjoyed the cop car ride to hospital a block away. I vividly recall the painter (he looked sooo sad), the gas station man who approached me as I picked my bike up and started walking it home, "Where are you going?" (He had already called cops.) " Home." "I think you better come sit down for a minute."

So, yeah, I was in shock and out of it from impact until cops arrived---about 5-10 minutes?

Anyway, that spot on my head, dead center, was always a tender spot for me. I couldn't stand to have it touched until I was in my twenties.

When I was sent to have a MRI (my family doc noticed neurological symptoms, sent across street to a neuro and a 'traveling MRI' just happened to be in town, Seattle 1990--yep, back then MRI machines were few and far between. This one was in a mobile trailer ready to roll on its way.) the largest lesion was the size of my palm and located EXACTLY where I had been stitched up in 1967.

About a 15 years later I had a home health care lady over and she said, "Oh, yes, I see the scar."
WHAT?!! A part of me thought I might have made it up. Thank you dear older brothers for your continuing torments accusing me of lying, exaggerating, yep, to this day I hear my oldest brother's voice accusing me.

I had to see it. I had to believe. I grabbed a mirror. There it was and there it will always be. My MS scar.

After the pick-up accident, I started having symptoms on and off, but as a kid, I had no words for what was happening.

My reading and math abilities slowed down. I still aced all my tests so what could I say? I saw stars in gym class when we did tumbling, anytime pressure was on my head--"She just wants out of gym!" Even a doctor said that to my mom, right in front of me...what could I say? Only Aunt Violet believed me. She always took my side in this.

One day I was walking home from school, I must have been 11, my leg would not pick up. I stood, unable to move, on the sidewalk. I thought to myself, "Remember this. This means something."  After about 5 minutes it lifted again. I never told a soul until I was in my mid-thirties, after my MS DX at age 33.

Most MSers, recall certain moments of MS after they get an official  DX. But, mine are so exactly related to that head trauma...I have NO DOUBT.

I think it was 2000 that was touted to be "The Decade of The Brain," with promises of massive research and discoveries. Uh-huh.

Friday, March 7, 2014

Falls, Dalmations, Dam, MS, Truck, Fan, Basketball Knee

I was trying to count my falls yesterday, or I should say falls that had an impact of the big-stage variety on my life. Shocking.

The first was around 1959, Christmas Eve to be exact. There was the big party at my Great-Aunt Vi's house and my mom just HAD to go downstairs for her cigarettes. I hated it when she smoked. I begged her not to go. She went, and so did a relative's dog, tripping my mom in the process and so began my history with falls.

Mom dislocated her shoulder. An adult sat me up on the kitchen counter in full view of my fallen mom, crying in pain. She was taken to a hospital.

I had opened a gift of a snow globe and perched myself next to the large house's front window, watching for Mom to return and turning the snow globe over and over. I remember there was a small brown plastic deer inside...I kept turning and staring...until she came home.

A few years later Aunt Vi bought me a stuffed 101 Dalmations puppy, "Don't run with it," she said as I darted out of her car, so anxious to show it off. To this day I SWEAR I was not running, but I tripped on sidewalk, and forehead met cement. The adults were so upset. They put me up on an ironing board (wait for it) and ran a large kitchen knife blade over it. Never made sense to me, but in later years I learned it was the coolness of the flat blade that helped the swelling go down.

Around age 9 I fell on my knee, scrapping it on sidewalk (wait for it) (nope, that's it.)

Age 10 was epic head to curb fall off my bike when a pick-up hit me. Luckily, hospital was half a block away. I am CERTAIN that one triggered my multiple scelrosis. The year was 1967. I was diagnosed with MS in 1990, after having symptoms for 23 years.

Age 11 my mom wanted to see some Indiana dam, I wanted to stop at a park to eat our picnic lunch first, so I stayed in a huff in our car. On Mom's walk back, she tripped, dislocating her shoulder AGAIN. We were in the middle of nowhere, luckily a ranger station was nearby and ranger drove us to hospital. Mom made an ambulance drive us all the way home because she was afraid of leaving her 11 year old little girl alone in a strange town. I saw her fall, but pretended I didn't---that bad behavior haunts me.

Age 47 I was up early to prepare for my visit to a disability exam in downtown Seattle. It was about 6AM, I turned to place breakfast on kitchen counter and right knee gave out---my first multiple sclerosis fall. (But, actually I blame an undiagnosed damaged knee from a twist during a basketball game in 1990.  It would remain undiagnosed until 2012. "It's just MS." ( DON'T EVER ACCEPT THAT WITHOUT QUESTION.)

Four falls (each time knee gave out) would follow, each attached to a call to 9-1-1.

Somehow I have not yet broken any bones---OH! I just remembered a fall! I was stationed as a security guard at a PBX switchboard in the main entrance to Bethlehem Steel in Seattle, about 1985. My headset on, I leaned back an the entire chair broke in two. My body flew off backwards onto floor, glasses went flying, pants tore apart. I had the ugliest but most multi-colored butt bruise you'd never want too see.

When I fall, I tend to go straight own. When my partner falls, she flies.

Once she tripped (flew) out of our studio apartment in 1982. There were many seizure and endometriosis pain induced falls over the years. In 2002, she tripped over a fan cooling our den, hit the wall and broke her wrist. Luckily, she had an arm-load of laundry so her landing otherwise was soft.

So, I suppose the fall that caused my MS was most devastating, but that first one...I remember turning the snow globe over and over and over.

Thursday, March 6, 2014

Face Book circa 1920s

While you wait on my MS finger to finish typing the next post, enjoy some pics of Great-Aunt Violet and some of her many friends. She, to her great dismay, out-lived them all. But she kept in touch with most of them.

Saturday, February 22, 2014

Photos From Years Gone By with Lavon Rector

 And as I ready for our move to a new home, still clearing out some old photos. Above is a friend of Aunt Vi's of whom she spoke fondly of: Lavon Rector---if you have ever heard of her family, then let me know.

 Karenlee and me celebrating our 17th anniversary at The Top of the Space Needle in Seattle. "And 17 more!" Yes, that would be now. I remember this was not long after one of my surgeries for ovarian cancer.

Left to right top family photo 1952: the men, Great-uncle Homer, Aunt Vi's brother, Ray Dotzer the husband of Hazel, Aunt Vi's sister. The women--my Aunt Bea, my mom, Ivah Springer (Aunt Vi's friend,) Betty Springer (Ivah's brother's wife,) Hazel, Marge (Hazel & Ray's daughter)--the kids: my brothers and Marge's daughter.
BOTTOM PHOTO: On floor my brothers and Ivah's nephew playing poker. I am on Ivah's niece's husband's lap pretending to read a comic book while learning poker at age 3.
Notice small TV set in Aunt Vi's bedroom.

Thursday, February 13, 2014

How a Doctor Fights Her MS Diagnosis

Excerpt from Dr. Wahls new book:
"I used to run marathons and climb mountains in Nepal. I’ve competed multiple times in the American Birkebeiner 54-kilometer cross-country ski marathon (once while pregnant), earned a black belt in tae kwon do, and won a bronze medal in women’s full contact free sparring at the trials for the 1978 Pan American Games in Washington, DC. I used to feel invincible.
Then I developed multiple sclerosis. After decades of troubling symptoms I tried to ignore, I was finally diagnosed in 2000. By that time, the disease had a good footing in my central nervous system. My decline progressed rapidly. Within two years of my diagnosis, I could no longer play soccer with my kids in the backyard. By fall 2003, walking from room to room for my hospital rounds exhausted me, and by summer 2004, my back and stomach muscles had weakened so much that I needed a tilt/recline wheelchair. Within three years of initial diagnosis, my disease had transitioned from relapsing-remitting multiple sclerosis into secondary progressive multiple sclerosis. In that phase, disability slowly progresses despite increasingly aggressive therapy. By 2007, I spent most of my time lying in a zero-gravity chair. I was 52 years old.
Everyone with multiple sclerosis has a story—the years of clues and strange symptoms that finally, in retrospect, make sense. It is in the nature of most neurological and autoimmune diseases that symptoms accumulate slowly, bit by bit, over the course of decades. This is what happened to me. As a doctor, I was compelled to find answers: a diagnosis and a cure. As a patient, I was compelled to save my own life."

 Diane: Being a doctor with MS must bring great challenges to find answers. What have you been most surprised to discover?
   Dr. Wahls: That the nutritional program also allows people to lose weight without being hungry to get back to ideal body weight and that this diet works for most autoimmune problems and chronic health problems like obesity or mental health issues.
There are many healthy diets out there, what makes yours unique?  
This diet was specifically designed to create the optimal environment that is nourish your brain cells. We have an iterative fashion tested the diet, validated the nutrient density (that is we were delivering the 31 key vitamins, minerals, and antioxidants that brain cells need to thrive) and tweaked the diet rules until we were very confident that people would exceed the Reccommended Daily Allowance for the key nutrients .
Do you see a cure for MS in our future?
Since our genes account for2-5% of the risk and diet, lifestyle, toxin exposure and other environmental factors account for the balance I do not see a cure based upon drugs or procedures.  I do see many people with MS and other autoimmune, chronic medical problems and chronic mental health problems finaly getting control of the their disease, reducing relapses, stopping relapses and improving energy, memory, mood, and walking and hand function as they learn how to eat a diet that maximizes nutrition, minimizes risk of food sensitivities, improves the elimination of toxins and learn how to address the other lifestyle/ environmental factors like exercise, stress, purpose in life that will also help reduce symptoms and get their lives back.  
A pleasure hearing from you. I wish you continued good health and many more discoveries! 

Monday, February 10, 2014


My "New Life" in an assisted living home started 5 years ago. So much has happened in that time, and so little. Sounds like life, doesn't it. Well, for me anyway, always seems one step forward--two back, rinse, repeat.

Anyhoo, I learned a lot about assisted living homes and that ilk. My in-laws spent time in several, my mother is in one and I am in one. At some point in your life the chances are that you too will spend time in such a facility or a loved one will.

It is a daunting thought, but there you have it. I am looking to move to a new home and I suggest this start after doing your reading on line---visit the place unexpectedly.

I think my new 'aimed for' home hates me for it, but in an hour I learned much more than the "marketing" person showed me. I sat with a resident, I talked to receptionists and other 'lower' staff. Sit and watch.

When I first moved here, I was told they accepted no dementia or Alzheimer's residents. Just like the recent place I checked out, within a short time a resident appeared who had no idea where they were.

She looked about 80, so sweet, just sitting by the front doors. We smiled at each other. Then the receptionist walked over and squatted next to her. "Are you going out today, Ruby?"

"Yes. I'm waiting on my ride. (wait for it) I'm going home."
"Ruby, you ARE home."
"I am? Is this a nice place?"
"Yes, very nice."
"Oh, good, I hate to wait on cars."
The receptionist left. Ruby sat awhile, then stood and walked into the dining room where a server greeted her.
"Hi, Ruby!'
"Hello. I am going home. I just hate waiting on my ride." Ruby sat at a table.
"Would you like a ham sandwich, Ruby?"
" Is it good?"
"You had one yesterday."
"Did I like it?"
"Oh. good," looking around, "I have to go home today."
"Ruby, you ARE home."
"I AM? Good, I hate to wait for a car."
"I'll bring your lunch."
"Thank you."

What I saw was wonderful. Staff knew her, cared for her, treated her with respect. She was happy. She was clean and dressed nicely.

I tune out the white noise of the marketing staff, and look at the details. Is the place clean? Talk to a server, a housekeeper, most importantly a few residents. (Not just one.) I spoke to 5 residents and 7 staffers before the marketing person got me.

And it was a good experience. 

Sunday, February 9, 2014


My mom is in front row, 6th from right. Her guitar was bright red. She loved to sing Hawaiian songs.

That guitar became mine when I was about 12 years old. It was beginning to rot. Mom never played it.

Feb. 27 is her 86th birthday. She has Alzheimer's and lives in a nursing home near my brother in Indiana. Our relationship was mostly phone calls after I moved to Seattle, Washington in 1982.
That relationship worked best for both of us. You may not understand that, many do not, but she and I did. We remained very close.

It is shocking to me that she has lived so long. Her diet was awful, never exercised, and smoked from age 17 to her late 60s. (We often fought about her smoking. She tried so many fad ways out, finally ONE visit to a hypnotist and she never smoked again. ***Here is the sad part: She told me the hypnotist had her think of not being able to see her grandchildren grow up, nor hold her great-grandchildren. Thanks to a bitter divorce, she no longer got to see her grandchildren and never held her great-grandchildren. I hope one day they all realize what they lost.)

Now my partner's parents swam, did yoga, ate healthy---my mom will soon outlive their death age.

Mom has by far outlived her own parent's age. Genes? Yes, but whose? My own life expectancy with MS is 78 years. Anyway, I have been thinking about her a lot lately. She and I could never have dreamed we would both be in a nursing-type facility at the same time.

As I have previously posted, I am packing, down-sizing, to prepare for my move to a new assisted living home. My mom wrote weekly letters to me, and I to her, over 20 years worth, so I must get rid of quite a few.  In one she asks me again if I would like her ring. "I planned to give it to Elizabeth, but I never see her anymore." (Her first granddaughter---we both wanted her birth so much...)

That got me to wondering what exactly happened to her ring. She was so proud when she bought it, feeling a bit odd buying her own ring, but egged on by our "JUST DO IT!" Aunt Vi. It had a black stone and small diamonds, silver...I just wasn't into jewelry. Going through her letters, I wished I'd taken it.

When Mom was moved swiftly (as these things often happen) from the hospital to her current facility, my brother was left to clear out her small apartment. He phoned and asked if she had anything I wanted. I said, "no."

Last night I came across Mom's ring in an old beat-up box.

It fits me perfectly. When I wear it, I see my mother's hand, I flash back to that teenager raring to move away from home; to that mother finally resolved to the fact her romance days were behind her, any ring put on her finger would be by her own doing. Sad, happy times, Mom's last child ready to leave her.

When did she send it to me? Why did she part with it?

Now it is mine. I feel as though Mom reached out to her daughter who fears her best days might be behind her. The ring speaks to me, "Not yet. Not yet."

Saturday, February 8, 2014


There was an article in TIME about being mindful. Apparently there are $$$ classes now to teach people how to shut off their cell phones and stick a raisin in their mouth and chew real slow...really EXPERIENCE the raisin. That's changing people's lives!


I am 56 years old and we had a NO COST lecture from parents & teachers in the 1960s: "Concentrate."

It is a sad place we live if we can't focus on one thing at a time. Multi-tasking is fine, probably good for our brain, but so is focusing on one thing at a time. This is NEWS?

The greatest generation has the "art form" down perfectly---they call it TAKING A NAP.

Try that, and if you can't do it, busy yourself with cleaning your home, gardening, or TAKING A WALK.  And seriously break your cell phone addiction. You Don't need to carry it with you.


Every time someone who has MS dies, I cringe. Anyone's death is a sad event, but if they had MS, I can see the obit---no mention of any disease but MS.

Readers see that MS killed them. I believe that is rarely the case.

It is a sorry state of affairs when I almost wish MS WAS a killer. Killer-diseases get the big bucks for research. Why, everybody (almost) knows somebody with multiple sclerosis and that MSer is doing "pretty good," "good days and bad," "horrible on family," etc. Let me remind you of AIDS and the 1980s---it was death and fear and hatred. As heterosexuals learned they too could easily get the death sentence, all out war against AIDS, now it is a disease people live WITH. So, we don't hear too much about it anymore. Like MS, if you can "live" with it, no worries, no big bucks for research.

Maybe we need to define "LIVE" a little better. "LIFE" with MS and AIDS is not okay, it is far from life as I once knew it.  Anyone who is HIV positive has a new "life" and it lacks a whole lot of "living."

So, I cringe, because people with MS need to know there are ways to live better and MS is NOT a death sentence. Of course what a person dies from is none of our business, but it can help many people to learn the truth. We are all one family in our DNA.

Monday, January 20, 2014


I was doing to rhyme the title of this post, but I'm all brained out.

The day may come for us as we age or if we become disabled, like with multiple sclerosis, when we need to hit the bars. Well, grab a few bars anyway. You'll notice three in my bath. Four if you count that little one far left at back. I still think that is just to keep shampoo bottles from falling.

Yes, this was how it was when I moved in. The tub is cut so low it is actually a shower. I still need my bench to sit on.

One must get creative, but I say the more grab bars--the merrier.

Sunday, January 19, 2014


One of the most difficult and gut-wrenching chores of moving to an assisted living home is the leaving behind of. Yes, that process of saying good-bye to items you thought would be with you until the day you died. Items full of memories. Irreplaceable items. I have seen the blank look in the eyes of seniors who are my neighbors here at my current home, they tell of the loss. Their words confirm this.

Some seniors try to keep all that they can squeeze in. Their small units are so packed that it is an obstacle course just to enter, some items even overflow out their front doors into the hall. I have noticed these are the people whose minds are as scattered and cluttered with non-essentials as their apartment is. Very sad.

So sad, in fact, that I feared it, that deep sadness of the leaving behind of.  Not sure when I first feared it, or at least decided I didn't want such sadness, but my partner and I have always chosen a minimalist lifestyle. I am more sentimental than she, with reason.

My reason for keeping certain items was that I believed one day I would hand them down to my family members. Young people in the family, like I was, anxious to learn about our history, share stories of lives gone by, but, no, there are no kids in my family who give a damn about such history. I am flummoxed by this---but there it is. They actually have no interest in me either! My Aunt Violet meant the world to me...so it is hard to understand the indifference of my many nieces and nephews. At any rate, the items are headed for sale, garbage, or charity donation.

As few items as I HAVE collected, it is still a process that leaves me feeling a bit sad. Photos will be removed from the many albums I have collected, put in a shoe box and when I die---into the garbage. I went to a "sale" at my previous apartment complex, the deceased tenant's daughter was selling all of her mother's items. There were many expensive looking pieces of art work about (I would read in her obit that she was the first woman to hold a leadership title at a big-deal New York city art museum. I just didn't have much money on me that day.) but what I wanted was the boxes of old photos she had.

Picking out a few, I asked the totally bored-looking daughter who the people in the photos were: friends? family? She replied with no emotion or involvement (I took to calling her a stone cold bitch.) "I have no idea." I just...I just... I can look at all of the photos Aunt Vi gave me, name 80% of the people in the photos and at least cam say with 99% accuracy if they are friends or family! But, one item was stunning, strange, but story-filled, a PURPLE mink stole! I think it was marked $25.00---IMAGINE! But the sale didn't go well, Goodwill collected most of the items,and stories forever dead.

And so it will be with my items, though I will attempt to write, my hands grow weaker. Once I asked Aunt Vi (I hear my reader's thought at this point.) to tape record her stories. My cousin bought her a recorder. Aunt Vi could never do it. I understand. It is just not the same.

So, as move day grows nearer, away goes the dream of a tea party, laughing over old school photos, playing music from our stereo to fill our space with joy. Farewell cute little stuffed bear that took the place of a pet I'll never have. Adios, to our painting done by the only true friend(s) we had here. And that fake tree in the corner? I had always wanted one...oh well.

The large teak desks---hahaha, I thought for sure our friend with two kids would want them, but NO, desks are relics! Homework is done on the lap, on the couch, in the bed. I will take a photo (that has no negative and will go to "a cloud."), a photo that must do. Make do.

"Make do." I heard my mother say that often.

The 'leaving of' has begun in earnest. Thank goodness I knew this day was coming.

Friday, January 17, 2014


Okay, I have begun the exhausting and strange process of searching for a new assisted living home.

Where I live now, with my partner, was a rush move of sorts. Although I had been living just fine, working, with MS for 15 years, I wanted to plan for the "just in case." I had visited almost all of the assisted living homes in my city of Seattle and the surrounding area where my in-laws (out laws? will they become true in-laws soon?) spent a few years in such facilities until their deaths. The place I now reside at was at the top of my list---it had a family feel to it and the price was right.

In one of the worst snow storms Seattle had ever seen, I found myself in a local hospital's ICU (intensive care unit) for FIVE days/nights, my heart stopped and restarted TWICE by the staff there, tests every day and they never found out what was wrong with me. (If you want to read more I posted about it earlier in this blog...my symptoms were fast heart beat, vomiting. I think I just got dehydrated.) After I was released home, I was so weak from my MS, partner also was becoming very ill, we were moved in here thanks to the then Mgr, and now it is FIVE years later. This place has changed tremendously in the last 6 months. It is time to go.

First I sent my partner to check out a joint on my radar with a couple of our friends. It got rave reviews. I went the other day.

The receptionist did not know what direction the building faced. The person sent to show apts. to me didn't know either, nor did she know what direction ANY of the apts. faced that she showed me! That ignorance would have sent me back out the door, except a staff member I ran into told me "heads up, she is new." That staff member and I accidentally bumped into each other. We talked for close to an hour before I met with the lost-in-space (she DID actually get lost in the building TWICE!) lady. FATE.

If you follow my blog, then you know I am a big believer in fate. I can FEEL it now. Something horrible had just happened and I said, "This has happened for a reason. I just can't see it yet." I see it now. This is where we will move to. It is fated and we are thrilled.

A new adventure awaits.

My advice about finding the right assisted living home? Visit as many as you can. Don't call ahead, surprise them. (Calling to get info is OK, but jump in when you want to visit.)

Make a list of your needs and wants. Figure out how much you can afford. Make a deal, don't settle for their first quote. At end of month the marketing staff want their commissions, so go closer to months end. Don't hesitate to ask for grab bars where there are none, a wood floor, new carpet---yes, much like buying a new car.

Most importantly: GET IT IN WRITING

Wednesday, January 15, 2014


Coming back from my Bell's palsy and last MS attack has been hard, I won't sugar coat it, but I have had to deal with much worse. Today I stood (always with walker) and each stand is thrilling. My caregivers here are a new bunch of very little help. I am looking for a new assisted living home, enough is enough. (FYI--there are no inexpensive ones in Seattle, I figure all my money runs out in 5 years---sweet dreams.)

So, after I made it up this morning my 40-something Kenyan caregiver is so happy! She didn't help me at all, I mean it is all she can do to peel an orange, oh wait, she didn't peel the orange that was sitting boldly on the table where it always sits to be peeled. She has been doing the 1-hour morning "wake up" duty for almost a month now, 3 days a week, still must be told what to do and still does 1/3 of it. (And I waited 6 months for this gem.) Still, she sees me try so hard each morning.

Right before she left, she comes close to me, bends near, "Are you a Christian?"

OY BOY, here it comes. I posted once about my Ethiopian caregiver who spent 4 hours every M-F talking God to me and me asking questions to the point of her great frustration. I don't argue, but out of need I have read the Bible to defend all the street preachers who see a disabled or gay person and just MUST set me straight, you know, keep me from Hell. (Christians are so considerate in that way and since according to them they alone know THE WAY out of Hell...)

I immediately responded, "Yes." She immediately told me Christ will help me walk and he was with us now. I immediately continued, "I am Jewish too and Muslim and Atheist, I...."  She had heard all she needed, was nodding, smiling (which I never see on her morning visits), and I doubt she understood my words. I doubt she understands most of what I tell her each morning.

In my 56 years I have found the most miserable people are either Christians or used to be miserable until they "found Christ." I also have seen the most hypocrites, gun toters, beer drinkers, adulterers, mean people who say they are Christians. And when someone they love dies---they fall apart! They are always praying for SOMETHING and football players praying for a win---makes me sick.

Anyway, it is America and I must live with all this nonsense, but really I wish they would live and let live. I have accepted a lot more of THEM than they ME, so who is the REAL "Christian" here? Oh well.

It is simply EXPECTED that any sick person should be praying for help. Yeah, that always makes us all better, right? No worries, people tell me at least once a year that they will pray for me.

Thursday, January 9, 2014


Seems dieting is top of news again. Now 'they' are looking into those who are "able to keep off the weight." (JUST NOW? I hear 'they' even keep a list! Well! SHUT MY MOUTH, nobody ever asked me.)

My childhood was spent as a fat kid. I took my share of teasing, could never find clothes that fit, was last picked for school games and flunked most gym classes. Aunt Violet, the master baker, over-fed myself and my brother. I willing ate, and I don't mean to blame her, but when I drove away from Ft. Wayne and Aunt Vi, I threw out (yes, littered) a box of freshly baked chocolate chip cookies she had insisted I take into my new life far, far, away. (Michigan.)

So began my new life of being a normal weight person and I never looked (fell) back. Over my 56 years I have watched many friends and co-workers attempt to lose weight "and keep it off." I kept my mouth shut as their enthusiasm was always so great...in the beginning. Never would I tell someone how to get un-fat. But, boy, did I want to.

Here is MY advice and as usual, if what YOU do/did works for you---fare thee well.

1. Lose the word "diet." What you want is a life of healthy food choices. If you don't know what healthy food is--EDUCATE YOURSELF.

2. Eat less. When I met my partner 34 years ago, I couldn't get over how she ALWAYS left food on her plate. It was a foreign concept to me. Suddenly I realized I didn't HAVE to eat the whole cookie or every bite of pasta. (And the less pasta the better.) Smaller plates are an easy trick. In between meals, snacks should be pieces of fruit, vegetables, or cereal is my personal favorite.

3. Stop thinking about food so much. I immediately look away from TV and print ads for food. Years at my last job, day after day, I had to listen to my co-workers talk about their latest diet, what food they had eaten, where they were headed for lunch---it was constant. And, of course they were as over-weight after years than when they began their goals. I wanted to scream, SHUT UP ABOUT FOOD!
Bring your food to work, and only eat when you are hungry.

4. Drink more water. Our body will make you eat if you are not giving it enough water. This was also one of the major reasons I was a fat kid. My water came from food. I never used a public (including at school) toilet (get ready) my ENTIRE life until I lost the extra pounds. I know, I can barely believe it myself.

5. Move more. I'd say "exercise," but that is very overrated and can be horribly expensive. My aunt Vi never exercised a day in her 103 healthy years. She cleaned the house, her car, cooked, prepared food for others, did laundry/down stairs dozens of times per day. She also walked FAST, a fast mover.

6. Lastly, just accept that healthy eating and moving is what life should be, what your body was made for. Change your idea about life and shut out the noise---being fat is no fun.

(On a personal note: I jump started my new healthy living by running, then weight-lifting. I am disabled thanks to multiple sclerosis, but I still lift weights every morning. No matter how small (I once could only lift a PENCIL!), it all helps. Move what you can.)