Queen Diane

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The Zen of Multiple Sclerosis

Today is my birthday and I shall open up a can of Zen on you. At my assisted living home they held a March birthday party, no, I did not go. Every year on my birthday I would take the day off work and go somewhere alone to reflect on my___years. This tradition began many years ago, shortly after my 18th birthday.

"A soul without reflection, like a pile
Without inhabitant, to ruin runs." Edward Young

MS is so Zen. It forces you to transcend the laws of reality as you knew them. Is hot really hot or is it hot only because your brain says so. When I touch a thing that others say is cold (tea out of the refrigerator) and I feel that it is hot as fire---who is right?

Words mean little, you can say it but I may hear it differently than someone without MS.

That which is soft to you may be painful to me. When I shut my eyes I can feel nothing around me; am I floating? Do I even exist?

MS forces you to embrace our inner eye, to look inward. It is within where we find understanding and peace with our new state of being. MS can not be allowed to change who we are. Our secrets held so deep inside will dissolve as we release our need to connect with the outside world. There will be no need for secrets or fears.

If aliens arrive upon our small planet some day, then they should be led to someone with multiple sclerosis because we will show them the Zen of MS and they will feel more at home.

Coping with Using a Mobility Device the MS Stigma

When my partner’s dad started feeling that his days were numbered he began investigating retirement/assisted living homes. He called one day very excited with the news that he and the Mrs. Had found where they would move soon. Well known in Seattle, the Ida Culver House and we were happy for them. We too knew it was time.

A few days later he called to say it was off. The Mrs. Just couldn’t live among so many old people. (They were in their 80’s) Within a month he had a stroke and neither were allowed to move back to the apt. they had grown to love. Now the oldest sister was scrambling to find a home for them.

On our first visit to them in their new home Mr. greeted our disability service van; he was standing out front and looked better than he had in years. The place was very nice. The Mrs. Hated it. “All the people in wheelchairs,” she would say with disgust. (Yes, right in front of a woman with MS who had been using such a mobility device for years.)

They escaped back to their apt., Mr, used a walker (Mrs. Would tell us he didn’t really need it) and as he and she continued losing weight eventually he fell and she just left him on floor through the night, later saying, “He just gave up and didn’t want to get up.” (AARRGGHH) He would die with a few months.

Then Mrs. Had to be placed in a home since she was not cooking for herself and the oldest sibling was certain she had Alzheimer’s. Several different facilities were tried, the Mrs. Hating them all. (So many old people in wheelchairs and using canes/walkers.)

Flash backward to when I was using a cane. People I passed always had words of encouragement and “atta gal!” which I never understood. I’d made friends with a woman in her 80’s who ran 5 or more miles a day and she wanted me to run with her. She believed if I just put my mind to it I could do it. I used to be a runner and wanted to so much that I even asked my Dr. if he thought I could go for it. “I think you should try something you will succeed at and I think you will fall and hurt yourself.” (Was that comment because he saw that I could barely wall-walk 30 feet?)

Ruth and I had coffee and talked every weekend morning for years and the day I appeared in my scooter, well, I knew it was not going to be received well. Ruth kept on me about joining her mile runs and she gossiped/trashed on any senior she saw with a cane or walker. One woman she said “just needs some primal therapy,” had a deformed foot and moved an inch at a time, grimacing with each step; she must have been in her 80’s and low-income. One day I stopped in my scooter to greet her and she asked how scooters work. Thus began my educating her about getting an electric mobility device, which Medicaid got for her. It opened up her world and replaced her constant grimace with a smile. Meanwhile, Ruth’s distaste for both of we-the electric-mobiled ones of weak minds-grew.

After many months I couldn’t take it anymore. Ruth was assaulting my self esteem. It was difficult enough making the moves from cane to walker to scooter to power chair---without a friend’s weekly put-downs. I had to stop having coffee with Ruth. She is gone now after drinking too much (an ongoing battle of hers) and falling, moving to a nursing home and her spirit of a free lioness died there.

When I was first diagnosed with MS many brochures would arrive and I was often invited to support groups. I was afraid to go and see people in wheel chairs. I was afraid to see my future in the flesh. Now, I am afraid to go and be the scary future newly diagnosed people will see. Ironic? LOL

Talking about my problems has never been my thing. Even blogging about my problems is uncomfortable. Why dump my burdens on others who already have their own? My back can still take it and I reach out when needed. But, isn’t it funny how we judge other’s “strength of mind and willpower” by devices that will help them continue to lead a full life?

Sorry, Ruth, sorry you never appreciated the strength it took for Maxine and I to use a mobility machine. I never judged you for being, in your words, a drunk. Ironic. This must be a generational thing because young people never seem to have a problem with me in my power chair, but my new senior neighbors do. I see it in their eyes. One went on and on about why she had to use a cane “for now.” (She is in her 90s and recently broke her spine!)
They see me as a whipper snapper spring chicken who is plain lazy.

Oh well, been there; done that---better get used to it.

Brad, Jennifer, Angie On My Balcony!

Brad is sooo handsome with his bright red face and breast. Ooops, I'm talking about the finch triangle affair on my balcony. Brad is VERY vocal and he has the super hots for Angie, who teases him a bit but loves to feel his soft feathers next to hers. Meanwhile, Jennifer is royally pissed off and keeps trying to get Brad to press near her. She even tried to jump between their love session yesterday! That really got Brad mad and he pushed her hard and she fell (as much as a bird can fall) from the balcony.

Seriously, it was more interesting than TV! Imagine that! Later Brad found a large, perfect shaped twig to build a nest for the babies I assume will soon follow. Oh, I wish he would make the nest on our balcony, but seems he is leaning towards the eave above. Drat!

Jennifer keeps coming back, and I shout, "Girlfriend! He's just not that into you."

Must get photo, never have lived around finches before. His song is BEAUTIFUL.

Any ideas what best to feed them?

SPRINGTIME FEEL GAY

Tattoo of Courage, Thanks to a 90 Year Old

With the scent of the fresh waters, leading into the Ballard locks of Seattle, filling our pollution weary lungs, my partner and I used to take an evening stroll through our neighborhood. We always discussed the small house which looked loved but lonely among overgrowth and a blooming commercial area. Who lived there? It looked so out of place amidst the new condos and ever-expanding businesses.


We would later find out that Edith Macefield lived there and refused the million dollar offers from developers. While cement was laid all around her home, she still refused to budge. All day and all night construction crews built around her beloved house. 90 year old Edith stayed put and became what legends of courage are made of.

Last year Edith died, but her inspiration will live on in many people from Seattle and around the world whom she will never know. A local tattoo parlor began tattooing a picture of Edith’s house on the bodies of those who need a reminder that big corporations and big money can not and should not buy our souls. We must not sell out that which we love; or those that we love. No, Virginia, everything does NOT have a price.

Interviewed by a Mouth on Wheels

Interview from The Mouth on Wheels

http://themouthonwheels.blogspot.com/

Ok Diane, here we go: What's your favourite way to indulge your inner child? Hard one, I have an outer child...ok, pet my stuffed kangaroo.

Name one item in your house that is so embarrassing, you hope a stranger would NEVER find it. LOL, my Fukadoo, a thumb size vibrator that a physical therapist told me to buy so I could move the nerves on my palsy-affected wrist. Thanks for reminding me to dump it.

If you could behave in the most outrageous way possible and never get arrested, what would you do? Jump on stage in Vegas and grab the mic, start singing.

Christian in Singapore with Bipolar Disorder

"Hi, I am a Christian with bipolar disorder and living in Singapore. Bipolar disorder (manic-depressive illness) is mood disorder with extreme mood swings. It is a medical condition that can be treated with medical and other helps. I enjoy writing, photography and making bookmarks and homemade crafts and gifts. I hope to share with you about God's goodness and mercies to me and His sufficient grace through the ups and downs in my life in my struggle with bipolar and other challenges. May all praise and glory be to God! " Nancie Singapore
http://lifewithbipolardisorder.blogspot.com/

Sing with Your Neighbors!

Today I went to a sing-along at my new home. What fun. When you are feeling down---sing. Doesn't matter if you can't carry a tune, just hum softly and carry a big cane! I met some new neighbors, worked briefly (and poorly) on a puzzle, and the organist says that she too loves show tunes! Now I will practice. Life is a cabaret, old chum, it's only a cabaret!

Black While Shopping,Gay Affection, Fallen Drunk, WHAT WOULD YOU DO?

“What Would You Do?" is a TV show on ABC that sets up actors to play out situations and then tapes innocent bystanders while they react, or don’t react, to the predicament laid out before them. Ethical dilemma’s and the age old (or is it?) conundrum: Do I get involved or is it none of my business?


“Shopping while black,” was on the menu along with helping a stranger with a fake badge to steal a kid. Would the white shoppers say anything about the obvious racism displayed in the store? Would people bow down to a supposed authority figure?

My mother taught me to mind my own business. I had my own idea---if it enters MY world it then becomes my “business.” No one in my family believed this way; where did I get this ideology from? No one taught it to me, that’s for sure. I still can feel the frustration, anger, and “WHAT IS WRONG WITH YOU?” from moments during my childhood when my mother used to say those very same words to me: What is wrong with you?


One hot Indiana summer a group of family adults and I were sitting on our screened-in porch. Cousin Lester was strumming his mandolin as the adults hummed or sipped iced tea. Then breaking the quiet darkness was the sound of a man beating a woman across the street. She was screaming for him to stop and the sound of flesh being smacked grew louder.

“Call the police!” I said with fervor. I was shushed as the adults just went silent TO HEAR BETTER. I began begging them to call for help. I pleaded with my mom, aunt Vi; I was 6 or 7 years old. “No. It’s none of our business.”


So, finally I couldn’t take it and went without a word to the kitchen and phoned the police. The adults were all the more interested in the evening reality show when the police arrived. I’ll never know if they knew it was me who called the cops.

It gets worse. Once a woman was RAPED under my 2nd story bedroom window, screaming then crying out for help between the houses where aunt Vi and mom and I now lived. I called the police.


In my old neighborhood there were many drug dealers/users, homeless people and nasty activities. I carried my cell phone and the police pretty much had a file on me from all my calls. I must have watched 30 people walk past a woman swearing to no one in particular and ripping off her clothes, then falling to the ground, and strangers walked past without even turning their heads. By now I was disabled by MS and used a scooter. I called the police and as usual was transferred to medics.

When I proceeded into the grocery the siren of the Medic One could be heard. “Oh God. Some jerk called the medics for that crazy woman again,” one of the cashiers was saying. I was in his line.


As my turn came he was in full rant about what a waste of time the woman was. “Maybe she was injured,” I said.

“No. She is just nuts,” he retorted without looking up as my cereal box passed his scanner. GIMME A BREAK “Oh, I didn’t know you were a doctor. She was bleeding, you heartless,” I didn’t finish the sentence but everyone around us knew what word I left off.


So, I am far from quiet when people say or do hurtful or unkind…stuff. What I just don’t get is why others stay quiet. My friends have warned me: “You will get attacked one day.” I am 52 and have never been attacked for this yet. “You will be killed one day.” I am 52 and if I go like that I go having done what I believed to be my business to do.

Nowadays it is so EASY. We all have cell phones or are near someone who does, ALL YOU HAVE TO DO IS CALL 9-11, the police will decide how to handle the problem if there is a problem.

On the TV show an actor fell on the sidewalk. He was dressed like a man down on his luck, maybe he had a beer bottle in his hand. People just walked by, I think it was New Jersey during rush hour, lots to do ya know. One woman stopped and cared.


Her name is Linda Hamilton, a homeless woman with a cane. She asked the man if he was ok and when he didn’t move she began asking passersby to call 9-1-1 with their cell phones. EIGHTY-EIGHT people walked by her and the man before a woman finally called for help.
Linda stayed with the man until medics arrived and then she was told it had all been for a TV show. She then simply limped away with her cane.

(Earlier, when the falling actor was a nicely dressed woman, many people came to HER aid.)
“Shopping while black” had a saleswoman telling a black woman that “her type” does most of the stealing and she had a guard frisk her in view of other shoppers. One black guy became furious, told off the saleswoman and left. One white woman told off the saleswoman and was in tears outside. When the show’s host explained it was a TV show, the woman had an accent. People from other countries don’t get us. I don’t either. We hold ourselves up as the land of freedom, yet we treat each other with disdain. We are a rich country, yet homeless Americans line our city streets.


Oh, the last experiment was two gay guys kissing in a sports bar. Surprisingly, more patrons supported the men and gave grief to the lone loudmouth heckler.

We all must hold others accountable for their actions. It is time. What will you do?

(On Utube you can watch videos from the show. I tuned to this while worrying about my partner’s pain/breathing/lack of eating and that works for me. I needed to help someone. I needed to remember when I have and who I am.)

Pain Won't Stop

Her pain gets worse and worse, usually after 3pm, she saw her internist today, just got more pain meds, told to taper off prednisone onto aspirin...this just seems so wrong, she has suffered through sever pain for years with fibromyalgia but this is a burst of relentless PAIN. I feel so useless...so alone...our friends have been great, but at night we are alone with it...WHAT IS HAPPENING TO HER??? It is wrong wrong wrong I can't blog till she is ok. Where is our break?

A Hobby is a Healthy Snack

Yes, I can see sailboats from my new home. Above is a puzzle that residents are piecing together in our social room. My mother never ever had a hobby. When she moved into her 70s she began "doing puzzles." I was happy and shocked, because as I just said---my mother never ever ever had a hobby.

Every month my mom mailed a photo of her latest puzzle. Holiday gift giving became easier as now she wanted puzzles. Over the years she asked for puzzles with fewer pieces, clues, so many clues to her state of mind.

Hobbies are a healthy enterprise. They make you happy and provide a feeling of accomplishment. I've always wanted a hobby, but nothing has stuck yet. My blog, I suppose, is my latest hobby. Blogs can be too much like work though, so I'm still looking for that hobby.

And yes, I really can see actual sailboats from my living room window. My father-in-law's hobby was sailing. I'm just saying.

Ler's All Charge Like It's 2004!

One day I think I get it, the next day I don't. Our financial mess---WHY is it a good thing to have people buying stuff using credit cards that they couldn't otherwise afford? I thought we were supposed to tighten our belts? I thought biting off more than we could chew got us into this crap hole? Are we supposed to save? Then why only give us 1-2% interest on safe CDs?? You, and by you I mean our financial wizards and government types, want us to buy Ford cars yet you know many are without jobs, so you entice with "no interest" "$4,000 cash back" and well, I don't get it. Excuse me while I hunt up my old piggy bank.

Assisted Living, Nursing Home, Retirement Good-Byes

When you live in an assisted living or retirement home or nursing home, it is important for your well-being to make friends. (As is true in life, right Midas?) But the reality is that such friendships may end abruptly in an unpleasant fashion. (No, not bell-bottoms)

Chuck was a friend I made at my new home. He served in the Army, his wife had recently died and his daughter lived nearby. He told wonderful stories about his life and loved a good joke. (You can call me CD. GRIN.) (Seedy, get it? Men will be men. Ha ha) We had lunch together once and he clued me in quietly about some of the residents here. (Again, that is what men call gossip when women do it, but "informing" when done by the men.)

Lately he began to wander a bit far and a few days ago was removed to a new home. I never got to say good-bye. Now, I realize this will be par for the course here and I must get used to it, but it will be a challenge for me because I hate good-byes. (If you have read my previous posts, and who HASN'T? Uh-hem, you may recall that I still remember my kindergarten classmates fondly. They will always be a part of me.)

So, I will get used to this. There are so many wonderful people here with wonderful stories, opinions, gossip, er/or information, that I will never lack for a friend. (Though I suspect many will find me odd at best.) There is just so much to do here. I can't wait until my partner and I are feeling stronger and can partake in more activities. (POKER! BRIDGE! YAHOOO)

For now I will shoot pool from a power chair (My first try, and not a pretty sight) and continue to try and figure out where exactly in the city I AM. LOL (No, seriously, where am I??)

Why I HATE MULTIPLE SCLEROSIS

This is when I am not embracing. My MS prevents me from being there for my loved one. I can't check in on her while she is in the bedroom. I can't fix her meals or a snack. Just now she coughed or was it a choke or cry? I HATE having MS. I HATE me. She needs me and I can't be there for her. I HATE MS.

Peracarditis--Fire in the Heart

Peracarditis, some residual damage after my partner's heart attack (which all agree happened in the dental chair during that horrible botch of a root canal), is current condition we must deal with. She will be released today at 2PM with more drugs and the knowledge that something NEW has been found near her spine. An MRI will have to be done later to determine what wonderful treat awaits her there. (After she gets stronger.)

She has been in absolute agony ever since the day of botched root canal. We tried speaking/seeing several of her specialists but that never got to happen. In my pre-MS days I would have been in their face and I can't tell you here what I would have said.

There is a reason for everything. I have come to believe that. Even though it seems that many times random actions cause fate, in my life it has been the other way around. Her heart was strong enough to weather a HEART ATTACK and a week of debilitating pain and still beat steady. She wants to live. She was a preemie, is a DES Daughter, and her body has more illnesses in it than I can remember (though I have them written in my wallet)---but her soul wants to live. Thank you for all the good wishes.

And the beat goes on.

Heart Attack

My partner is in hospital after suffering a heart attack. I am sure it is connected with that botched root canal from last week. This happened exactly 3 months from when I had to go to ICU. My heart is breaking.

Books Speak of Their Owner

The first thing I do when I visit someone's home for the first time is look at their books. The books a person keeps tells you a lot about that person. So, of course my first visit around my new assisted living home was to the library there.

It really is cozy, with a fireplace, several nice tables, comfy chairs, and I was VERY pleased to find a varied and interesting collection of books. I felt right at home. (If you follow my blog, then you know what I mean.) Already I have donated several of my own books and many magazines. Tess runs the library and she is a sweetheart. Yes, I love my new home more each day.

Toenail That Grew Up Not Out, MS Swelling Complication

In previous posts I have told of my strange toenail that grew up but not out after MS caused my feet to swell about 3 years ago. I saw several doctors including a "specialist" and got the same response: "I've never seen anything like it. It will eventually grow out." Sure. Well, that never happened and no amount of filing helped. FINALLY at a podiatry clinic at my new home a nurse FIXED MY TOE! Using 3 small tools and a file, 30 minutes and my toe is normal again, or will be after the healthy nail can now grow in. You just have to find the right person. "I see this all the time," she said. Now THAT'S what I'm talking about!

After three days of applying an anti-bacterial ointment, I will apply Vick's Vaporub until my nail is good as new.

I asked nurse Diane (yes, Diane) how it works---she has no idea.

So to the Dr, who said it was not fungal---WRONG. To the $350 do-nothing/know-nothing "specialist" who said it was so strange---WRONG.

Fall Leads to Death of Natasha Richardson

I still recall the look of love and concern on Natasha Richardson's face when she spoke of her husband Liam Neeson's horrible motorcycle accident in 2000. He hit a deer and was thrown from his Hog just before it hit a tree. Luckily, he was wearing a helmet and although he needed therapy to recover from his broken pelvis, he eventually made a full recovery.

His wife nursed him back to health while also raising their two young sons. Now in the cruelest of fate Natasha, daughter of Vanessa Redgrave, has suddenly died from what by all accounts was a simple fall on a beginner's slope.

Just this lunchtime I was discussing brain injuries, mine, my partner's, and how little researchers know about our brains---even after TIME magazine heralded in the 1990's as the "Decade of the Brain." How little we still understand about it.

Natasha Richardson, dead at age 45.

A Banana for Your MS

Yes, this is a blog that mainly (unless there is a historical election happening or the birth of 8 babies to a single mom or---never mind) deals with multiple sclerosis, but I stay away from giving advice unless asked. THAT said (Oh, and of course I am full of advice, ie, my opinions, on other blogs---these are known as comments, another word for opinions/advice/or if you are a man:gossiping, hahahaha) I will write a simple suggestion today for a way to help you survive MS.
Banana fanna oh fanna bannanna nanna oh nanna fee fie oh fanna---BANANA. Bananas and MS go together like dancing and Ellen or dancing and stars or stars and the moon or Ellen and Portia or fast cars and Porsches or porches and swings or swinging and dancing, ok, you get the picture.

They have helped my leg jumping during sleep. They have kept me regular. They provide me with much needed potassium. I took Solumedrol every 2-3 months for several years and that drug will suck the potassium right out of you---bananas. They have lessened my cramps from spasticity. And they sure zing up a bowl of oatmeal!

A banana a day keeps some MS at bay.

Montel Educates Oprah About MS

Okay, Montel Williams our MS unofficial spokesperson was on Oprah today. I didn't want to watch, but a friend thought I should. Please, I want to like him, I really do, but I just can't. Before I tuned in I suspected he would have yet another book out, promising to inspire and enlighten those of us with MS---but, no, I would reserve such cynical judgements----what ho!? Sure enough, he was there to plug a book.

Oprah: "What scares you the most?"
Montel: "That I won't be able to walk."

Well, that was fair enough, at least he is not afraid of not being able to walk AND see. He is not afraid of not being able to pay all his health care bills or make his rent payment AND not be able to walk, see, AND have a sick spouse.

Now he says he is a changed man. You know, all those people who never appreciated the best things in life and now since they have MS--EUREKA---they love their kids more, respect their wives, enjoy a fresh breeze, etc.

He takes TWENTY-SEVEN "pills" for his MS...did he mean vitamins? Munchkin to Oz---what message about MS are you giving to people? What are these pills?? GIMME A BREAK.

Okay, Montel and I won't be dining together any time soon, but here is what really knocked my striped socks off----Oprah didn't know what MS really was. Okey dokey, where is all the MS Awareness money going? If O isn't aware of MS, then certainly Joe the one-day plumber hasn't gotten the memo.

WHERE IS OUR ADVERTISING DEPT.? Once every couple years we get thrown a bone. My favorite was the ad showing a woman with barbed wire around her head---powerful. I posted it on my cubicle at work and discussed it with co-workers whenever I could. If Montel really cared about helping others with MS, then why charge them for his wisdom and tips for dealing with it?
I'm sorry, how many homes does he own again? Well, I guess they don't come cheap.

And what is this about suffocation? Glad I taped it, Dr. Oz said the number one cause of death for people with MS was SUFFOCATION? Sufferin' succotash! What? How? Suicide? Seriously? Not heart or cancer? Talk about bomb dropping, from all the doctors I've seen since my DX in 1990 the word SUFFOCATION has NEVER been mentioned.

I truly respect the way Michael J. Fox has handled his disease and his goal of finding a cure and getting funding for research. When he speaks, he educates, and it is never all about him. Egads.

The Mask of Multiple Sclerosis

Once people know you have multiple sclerosis it is as if you are wearing a mask. That MS mask is the first thing many will see as you walk, limp, or roll into a room. Few will ask you to remove the mask. Many don’t care what waits behind it. It can feel like a masquerade party that you can’t leave and that will never end.

While we are basically that which others see, unable to ever see the whole of ourselves except through a mirror, the person before them can allow the gazer’s definition of us to be the only reality. We do have a choice though.

Not a huge Batman fan here, though I saw the first Keaton-Batman movie many times (I digress), but Batman’s mask put more pressure on him than he could handle; hence, the “Dark Knight.” If only he had ripped it off and allowed people to see that he was just an ordinary, albeit rich, man like any other; then he would have received understanding and compassion for his true self.

Some people with MS wear a mask to hide the fact that they have MS. No physical differences betray them and they find comfort in the mask. Like the vulnerable Superman, who, without his Clark Kent glasses might find a kryptonite paperweight on his desk one day. He would most certainly be out of a job!

Those examples are comic book stories. People with multiple sclerosis need wear no mask. Once you do, it may be very hard to remove.

Crafty Birds for Kids and Bird Lovers

"I find that apartment building very appealing." "Well, Dear, let's fly around a few more first."

A friend sewed together some "spool birds" while watching the Oscars at our home and let us choose two. She made them using scraps of material. The Oscars were half over before I even realized what she was doing. (I started seeing small creatures sitting on our couch.)

A free pattern is available at http://www.spoolsewing.com/blog/2008/05/16/bird

Moon Over Seattle. View From Assisted Living Home

This was my view as I headed off to sleep the other night. Very different from where I moved from--deep in the city and my window view covered by trees. I called that home of 16 years my "tree house;" but after so many years of the trees growing larger I began to feel a bit claustrophobic. Here I feel a part of the universe. This is exactly where I am meant to be. The universe has spoken.

Classical Love Story--Harold and Maude

We watched Harold and Maude Saturday. I had forgotten how moving that movie is. The Cat Stephen's songs were so beautiful. "If You Want To Sing Out, Sing Out"
"Well, if you want to sing out, sing out
And if you want to be free, be free
cause theres a million things to be
You know that there are
And if you want to live high, live high
And if you want to live low, live low
cause theres a million ways to go
You know that there are
Chorus:
You can do what you want
The opportunitys on
And if you can find a new way
You can do it today
You can make it all true
And you can make it undo
You see ah ah ah
Its easy ah ah ah
You only need to know
Well if you want to say yes, say yes
And if you want to say no, say no
cause theres a million ways to go
You know that there are
And if you want to be me, be me
And if you want to be you, be you
cause theres a million things to do
You know that there are
Chorus:
Well, if you want to sing out, sing out
And if you want to be free, be free
cause theres a million things to be
You know that there are
You know that there are
You know that there are
You know that there are
You know that there are"

Domestic Violence--A Mixed Up Love

Of course I am reminded that there is the flip side of sweet love. Domestic Violence Awareness Day was March 9. Read more here: http://www.bloggersunite.org/event/domestic-violence-awareness-day

Romance, Marriage on Grey's Anatomy, A Love Story Times Two--Taylor Swift

Hey, I am a romantic. I'll spend $200 for roses on Valentine's Day. I watch Lifetime. I want Derek and Meredith to get married and yes, I believe in happily ever after. Not all, nay, the majority of men are not woman beaters. Your soul mates exists. There.

After all the talk about Rihanna, well, I just had to say that. The happy couples are boring and happy---IF you find FOREVER boring: I don't.

And, yes, I love Taylor Swift's new song: Love Story

Read the Book Until my Fingers Numb, Sang the Song in Choir, Watched the Movie a Million Times

Root Canal Hell, ICU Bad Luck, Out Damn Spot!

Today my partner had her 2nd attempt at a root canal (a head-on car crash smashed her face around in '79 and repercussions continue) and AGAIN the shot her over TWENTY times without being able to numb her (a week ago---same scenario, different tooth) and AGAIN she must now undergo surgery to have a second tooth removed.

This is why MY mom and aunt Vi hated dentists. (My mom had wrong tooth drilled once and never went back.) I just don't understand how they can be so barbaric in 2009! Could we just get a break, a month free of hospitals, falls, surgeries? JUST ONE MONTH? I can't believe just over two months ago I was fighting for my life (I'm told) in an ICU during one of the worst snow storms Seattle has ever seen.

Maybe March 17th will bring me some good luck.

Epilepsy Dialogue Start Now!

Paula Apodaca
California, United States
I have been a person with E. for over 50 years. My experiences and observations are my own. I hope to encourage a larger, more diverse dialogue to take place among ourselves as persons with epilepsy, and the general society. I believe it is time for a change in the way we see ourselves and our place in the world. I also believe that we are the only ones who can accomplish such a change.
http://epilepsy-paula.blogspot.com/

Assisted Living Makes My Life with MS Easier

Yes, I'm still adjusting to my new home and feeling a bit like I'm starting a new high school. One great thing about the place (and there are many great things here) is a podiatry clinic once a month. FINALLY, maybe a suggestion about my weird toenail that grew up instead of out when MS made my feet swell. The $350 specialist just told me it would go away (not), my neurologist told me the swelling would just always be there (not), so maybe the visiting foot person will shed some inexpensive light on my weird toenail. (And I don't need to leave HOME.)

Family Values Loose in Palin's Alaska

Surprised and shock---Gov. Palin's daughter and her baby's daddy split up. Am I the only one saying: PEOPLE stop being hypocrites! We must have sex ed earlier in school and "abstinence" is a silly option to hold your teens to. PRO CHOICE Now, take that moose rifle off Bristol Palin's baby daddy's back; the gig is up.

Why is My Disability Your Business?

Don't you love when strangers make judgements on your abilities without knowing the health condition you are dealing with? The glares when you leave your car with your cane? The fake exuberance when you are seen walking a few feet from your wheelchair? (We are not all "bound," some of us need it for longer distances when we become weak.)

Do they REALLY think we are faking it? Do they REALLY think scooters and power chairs are "FUN?" How shallow minded some people are, how inconsiderate. The bite marks on my tongue are too numerous to count.

The Cold and Hot Effect on Multiple Sclerosis

Today the expected low is 25'; that is C O L D for Seattle. Usually heat affects my MS more, but very cold water or air can also have "that slow motion" effect. Any extreme sends my body into a hissy fit since MS entered my life. After 29 years my partner can tell when I need a fan or blanket. Is it the slurred speech or s l o w m o t i o n that gives it away?

The other day I had to explain what multiple sclerosis was to one of my caregivers. 99% of my caregivers, over 5 years, have not known what MS was.

"In multiple sclerosis , damage to the myelin in the central nervous system (CNS), and to the nerve fibers themselves, interferes with the transmission of nerve signals between the brain and spinal cord and other parts of the body. This disruption of nerve signals produces the primary symptoms of MS, which vary depending on where the damage has occurred

Many people with MS experience a temporary worsening of their symptoms when the weather is very hot or humid or they run a fever, sunbathe, get overheated from exercise, or take very hot showers or baths. For example, some people notice that their vision becomes blurred when they get overheated"---NMSS

The theory is that heat (and cold) further disrupts the signal transmissions along the nerves; temperature effects tend not to cause permanent damage. Snow in March in Seattle---bunny sleepers for me!

Stem Cell Reseach Full Speed Ahead When Science and Politics Separate

President Obama will support the separation of science and state. Prepare to see a light at the end of your disease. Can I get an, "Ah Right!"

"...research advocates are expected to push for the process to go as quickly as possible to ensure that universities have time to submit grant proposals that can be reviewed and accepted before September 2010, when the health institutes must commit the last of the $10.4 billion given to the N.I.H. as part of the economic stimulus program." NY Times 3/8/08

Brain's Racing Images

Not long after acquiring my TV remote control I learned the joy of fast forwarding. I've enjoyed many 2 hour movies that way and enjoyed commercials even more.

But, a funny thing happened on the way to the forum (which I call sleep)---my dreams began going at the speed of light (thought I heard sonic boom, was just previous day's beans) and while at first it was very disturbing, I began to enjoy it.

Truly fascinating were those images that my brain could barely process into a meaningful picture. The more I accessed it, yes, I learned how to make my brain "go there," the more intriguing it became as I could remember some of the images. My brain was learning how to translate them as fast as they were appearing.

Have you ever experienced this or heard of it? Then, it just stopped. To access it was similar to letting your vision relax and you see double. Isn't life fascinating?

Tequila and Cat Mix with a Large Lime

A Blog About Dealing with Alzheimer's

http://www.creatingmemories.blogspot.com

Read a journal about dealing with eary onset Alzheimer's at:
Dealings with Alzheimer's Blog
(And dig those snow man pics!)

Thousand Dollar Cupcake, Melissa Lay Off the Botox

Melissa Rivers looked almost as old as her mother. Why would a mother preach to her lovely, young, daughter to begin having Botox the sooner the better? Seriously, I love Joan Rivers and have followed her career since I was a kid, but now Melissa looks so unreal/plastic/tight in the face that it is sad.

Channel surfing, ugh, $9,000.00 for a few cupcakes? Has anyone told Donald Trump on his show, Celebrity Apprentice that we are in a recession? The whole show turned my stomach. Seems there is plenty of money still in the hands of the wealthy. Surpris surprise surprise...ugh.

Neither Rain, Nor Sleet, Nor Hail, Nor Red M&Ms Cause MS

Yes, today I finally did it. I called the MS Society and referring to the big billboards that were in Seattle, "Is it the rain?" then saying more MS here than anywhere and call for more info, and after waiting through many recorded "we appreciate your call and will be right with you, but it would be better if you left your name/number so that we can call you back in 48 hours if our system works right," yes, I'm paraphrasing---and spoke to a woman who said, no, rain does not cause MS.

"Why then do you put that up? To scare people?" Her voice reply turned into a mumbling, "No, we want to get people to talk about MS..." I changed MY voice to an indignant, "Why wouldn't you prefer that people talk about facts? There are enough unknowns, why add to the confusion?"

"Just a moment, I'll transfer you." CLICK Yes, she hung up on me. May I say (yes, I may, this being my blog and all) that in 18 years of work that dealt with talking to people on the phone, finding the right person for them, I NEVER accidentally disconnected a caller. So, don't even go there with me.

Then I called the toll free number on a letter I just got (They have my new address already and NO I have never used Rebif or Avonex.) from an MS Walk "sponsored by EDM Sereno." Now, I have never noticed EDM before Sereno before and wondered what it stood for. (Yes, I googled it--nada--looked into financial info online---zip.)

"What does the EDM stand for?" "That's a good question," said the earnest woman who took my call, "Um, I know we were bought by a German company a few months (or years) ago...just a moment. (Her voice pacing and my "uh-huhs" led me to expect what was to follow.) CLICK

Maybe it was EMD, I've lost the letter along with a bizzillion other papers I've lost, er, misplaced around my new home; and I thought I should have hopped over to Lisa Emrich's blog--Brass and Ivory. She probably has posted about this already.

The more I researched, the more depressed I got as it appears we only have one drug co. anymore---so many have either mergered or bought each other out. Scary thought. CLICK

Embrace with Grace the Assisted Living Life

One aspect of assisted living that I am working to embrace is the lack of privacy. It is a necessary evil, but I must consider it a necessary inconvenience. Caregivers must have keys to my door and must be able to come in whenever. I need this. It is a good thing. But, I still miss a private sanctuary. Multiple sclerosis took that from me and I hate it.

Around 5AM one day, I was asleep in the living room and I hear the door unlocked and suddenly a tall man carrying a large box was in front of me. I turned on the lights to find a man holding a large, yellow, plastic container.

"Who ARE you?" I asked. He was the night security guard and my "before 6AM, left at your door" grocery delivery was in the container. (a small sack of food) I had ordered it early so that my 6AM wake-up/bathe/dress call caregiver could pick up my bananas for the morning breakfast.

Yes, it takes getting used to, but I was desperate before for help and now I have it. Next I must learn to accept and embrace with grace all the good with the bad. This new life will test me for sure.

At Risk for Multiple Sclerosis: How Do We Tell Others?

In 1995 I met a new friend for coffee. We talked a bit and then she said, “Can I ask you a personal question? What kind of things does MS cause?”

After telling her, she then told me some “strange” sensations she had been having. I asked a few questions and it seemed obvious to me that she did indeed have MS. What was I to say? “Do you think I might have MS?” she asked.

My answer was that many things can cause the symptoms she described and she should definitely see a doctor. About year later she was diagnosed with MS.

How do we tell someone that we think they should get checked for MS? My niece once had an “episode” where she couldn’t lift her leg and began tripping a lot. I remembered when, at her age, I too had such an “episode” and couldn’t lift my leg. Since then she has several car crashes. In past years I wouldn’t say a word, but nowadays with drugs that may slow or even prevent full-blown MS…should we mention that they get an MRI?

If we should mention it, how to go about it? New drugs make early detection a possible chance for an almost normal life---yet, the person could have a benign form of MS and never have any problems at all. Will insurance companies even pay for such an expensive test (MRI) for a child, just because the parent has a suspicion?

It is a new frontier, one that I hope the National MS Society will forge ahead into the scenario of how to broach possible symptoms in a child with risk factors. Or do they actually know so little about MS that “risk” is an impossible attachment to MS awareness.

Personally, I guess I will have to wait for someone to ask me and tell them to see a doctor. Seems like more should be done though. What do you think?

Move to Assisted Living 101---Forward Your Mail

Sad that I feel weird about something working well. Yet, I can't stop wondering how quickly so many people know where I have moved to.

When we began packing for the big move to our assisted living joint, we filled out the proper cards at the U.S Post Office down the street. Bills need to be forwarded and it IS tax time. Magazines are difficult and though most have info on how to contact them when moving, it just happened so fast and we couldn't possibly catch them all.

The first month I started thinking of all the places we hadn't notified and tried to figure out how to contact them online. Unfortunately, I didn't have Internet access until Feb.; but strangely all my magazines/newsletters/misc. mailings all found their way to our new address. How!?

How did the MS Society know my new address? Catalog from Vermont Store? JCPenney, and no, we don't have a JCP credit card or have even bought anything from them in years. Kind of freaky...

Ironically, the one place that contacted the front desk here asking for my new address was the one place I gave the address to in person AND in writing---my OLD address! (They had my deposit.)

My city retirement newsletter, AARP, have arrived to my new home without interruption. GPS? CIA? Makes one wonder.

Does Multiple Sclerosis Make You Stupid?

In previous posts I have written about my bad experience trying to get a good eye exam in my wheelchair. It took many cold calls to find an opthamologist who would/could give me an exam and new prescription while I stayed in my wheelchair. (Since they had no one and no way to transfer me to the big chair with the refractor.)

Finally I found one in Seattle. I made the appt. with my speaker phone on; two other people heard the conversation---appt. date March 3, 9am. Then I arranged my van ride.

Friday before this week, a message was left on my phone: "Reminder of your appt. at 10am," and of course it was left 5 minutes before the office closed for the week.

First thing Monday I called the doctor's office and was told that I was flat out wrong. I said, "I don't think so. I will see if I change my van ride." Then the receptionist argued that appts. must be made far in advance. (Who am I? Just a person with MS. I won't know the difference.) I said I called a month ago. She flipped through her papers, read my previous call date before thinking---I had called a month before. So, she quickly stated that the Dr. is booked a month ahead all the time.

My van could not take me Tues.; I called back and got a different receptionist. I asked when the next available date was---one week away. Then I told her what had just happened and she said , "Well, someone just cancelled." (OK) I asked when the next regular open day was---two weeks away.

After telling her I had been lied to and told the Dr. was filled up a month away, she got snippy and said, "What do you want me to do?" I bit my tongue and said, "The doctor should know how patients are handled by you. Please bring this up at a staff meeting." The reply was a snooty, "Fine."

Again, AGAIN---who will believe someone with a brain disease? Many people equate wheelchair with stupid person. They speak over you; how could YOU understand. I have MS, but I am not stupid. (Jeopardy aside)

The First Time in Your Life

The first time:

I felt hate---when my brother cut off the head of a rabbit and placed in my bedroom room window sill. I was 11. He was 18.

Kiss---age 15, across from a KFC around 1AM

Got a pet---Smokey the cat, my age about 6

Held a gun---bb age 6ish

Movie---The Miracle Worker, age 5

Saw a dead body---in coffin, 4ish, can't remember who it was

My car---an old Ford station wagon

Guilty pleasure---sitting on the plastic horse at grocery (I didn't care that we didn't pay the dime for it to move.)

Road trip---Mom and I went to Santa Claus, Indiana (Mom LOVED it)

Cool clothing---a green plastic tie

Whether we remember them or not, our "firsts" had a big influence on the rest of our lives.

C Pac Run. Run Pac run. You Will Take Back the Nation When You Pull the Constitution From Our Liberal Hands

Rush wants conservatives to take back the nation; right---it was doing so well before. I don't know if Ann Coulter is a lesbian, many have said so, but I have no idea; besides nothing wrong with being gay, just being a hypocrite is what bugs me. Last time I read about Rush he lived in a 24 million dollar home, now why doesn't THAT bother his listeners, oh right, Rush rants about the wealth being redistributed. He has been, at last count married 3 times? Now that is a very conservative religion lifestyle...NOT. Did I hear canned applause during his recent CPAC (Conservative Political Action Committee) speech? If you are a Republican, do you seriously think these two mouths help your cause? Well, conservative rich is as conservative rich does.

The Bard Doth Know Me

Full many a glorious morning have I seen
Flatter the mountain tops with sovereign eye,
Kissing with golden face the meadows green,
Gilding pale streams with heavenly alchemy;
Anon permit the basest clouds to ride
With ugly rack on his celestial face,
And from the forlorn world his visage hide,
Stealing unseen to west with this disgrace:
Even so my sun one early morn did shine,
With all triumphant splendour on my brow;
But out, alack, he was but one hour mine,
The region cloud hath mask'd him from me now.
Yet him for this my love no whit disdaineth;
Suns of the world may stain when heaven's sun staineth.

Think Before You Speak, Are You Happy, Gay, or Both?

http://notawellbehavedwoman.blogspot.com/2009/02/appropriating-our-language.html#links

Thanks to NOT A WELL-BEHAVED WOMEN blog for this video link.