MS Got You Down?

The new physical therapist is a loser. I'm sorry, but there is no easy way to say it. Too bad his predecessor can't come back. HE told me this new guy would "have ideas," and "bring bands," nope, nada.

There were ideas, mine, "Good idea," he said. I bit my tongue to not shout, "YOUR TURN."

Sigh, what is it about this occupation? Or is this some cosmic fate tossed upon me? Oh well, I am on my own again. Let me tell you, it is exhausting to be on your own. I am exhausted.

My weights are sitting there, staring me down. I won't give up, but I won't be happy about it. MS is starting to get on my nerves!

Dinner was lousy the other night. I need to just eat from the salad bar and go home.

The Casey Anthony trial---every time I take a fall or have some MS "event," something is all over the TV news. I had been going 3 days Solumedrol IV during 9-11 and something similar during Columbine...that mother looks guilty as all get out. Your kid goes missing for an HOUR and what loving mother doesn't freak out?? GIMME A BREAK
Today a spectator was handcuffed and got 6 (5?) days in jail, plus $450 fine for flipping the bird to one of the attorneys. That was good TV. I like the judge. He is Judge Judy, all black, with less poetic attitude, but all business.

Once, long, long ago, I wanted to be a lawyer. Even now I say under my breath, the closing statement for the prosecution. They screwed up. She will get off easy, pay some fines and do a little time for lying to the police, but she walks.

Will she ever admit the whole truth about her 2 year old daughter? Some publisher is just waiting to sign her.

Okay, I have held computer as long as I can. Time for aspirin. This MS thing is growing old...I really thought I'd be in the 50% who never need a wheelchair. Fifty-four and trapped with this chronic disease--hogafats! It is July. The year is half over. Life goes by so fast. Just yesterday I was 10 years old, walking home from school and my leg wouldn't lift. I started repeating, "I must remember this. I must remember this. I must..."

Falls With and Without MS

So, now I have sprained my strong arm. The hits keep coming. Okay, I am recuperating. Ugh. BORing. Started using weights too soon. Drat and dumbguards.

Have to keep up with quad exercises for PT visit Monday. Dang fall.

My mom fell down stairs on Christmas Eve when I was 3 years old. A dog ran between her legs, tripping her, and she dislocated her shoulder when she tried to hold onto the railing.

My mom fell during a car trip to Santa Claus, Indiana with me. I was 11. She dislocated her shoulder again.

Oh yeah, I fell head first after Aunt Vi bought me a stuffed 101 dalmatians puppy after the movie first came out. The elder woman ran a big knife over the bump, then Aunt Vi drove me to ER, but I was sent home, no x-ray, nothing.

My next big fall was in 2004...2005? I was preparing breakfast and right knee buckled. Fell on my side and rolled as one should.

I hear that I fall less with my MS than most...have you fallen?

CCSVI MS INFO MEMERIZED By Cold Doctor

When I had my appt. with my always late (up to an hour, while I sit in exam room hearing her laugh in the hall) neurologist last week, she began with, "I have some bad news." (Huh?)
"I am moving to the new hospital in Issaquah, but Dr. Howard (name changed to protect the innocent) will be taking my place here."

I wanted to scream, Hallelujah! but, I played it cool. FINALLY I would be free of the b**** and get to have a Dr. I had been WANTING for years, but my insurance didn't cover him. His name never showed up on any drug seminar sponsored events.

So, I asked what she thought about CCSVI. She took off, clearly having memorized her response and telling me nothing I didn't already know. When she shut up, I said, "But what do YOU think of it?"

Coldly as every sentence she speaks to me, "I don't believe it works for MS."

Then she launched into putting me back on Copaxone, funny since a few years ago she told me it was doing me no good. Then she began telling me about a trial the new doctor was doing and I could get in that, but the side effects were not too good. (Isn't she an uplifting person?)

That was it. I had waited so long past my appt. time, my ride home was gone and I had to reschedule. It did leave me time to complain about the office not having an easily accessible door opener and how ironic is that---TO ears that could care less.

Soooo happy to be rid of her. I'll see what the new guy thinks about CCSVI.

The Love and Light of My Life are Thee

HAPPY 32 YEARS MY DARLING, YOU ARE THE REFLECTION OF EVERY SHINING STAR, YOU GUIDE ME THROUGH MY DARKEST HOURS AND BRIGHTEN MY HAPPIEST MOMENTS.

LONG AFTER OUR BODIES ARE DUST AND NO ONE KNOWS WE EXISTED, WE WILL STILL BE SOUL MATES OUT AMONG THE STARS, OUR LOVE A LIGHT SO BRIGHT THE OTHER STARS WILL BE JEALOUS.

I LOVE YOU, I ALWAYS HAVE AND ALWAYS WILL.

Colored Bracelets No Longer Disease Awareness

So, I saw a physical therapist the other day. Love at first sight: he was buff, big biceps, large tattoo on both arms, crisp khaki pants, late 20ish, and a red rubber bracelet on his wrist!

"What's the bracelet for?" I asked, figuring heart association, hoping MS.

"Core reminder," he said as he showed it to me up close. Sure enough, there it read, "Core Reminder." (Your core muscles are the center of your body's universe)

Yep, the original (and brilliant) intent of the cheap disease awareness bracelets has officially died.

I asked if they were all red. "Well, for our hospital anyway."

Didn't we do that years ago with strings? To remind us to do something?

Alas, I guess my power chair speaks for itself.

Montel and CCSVI

Montel Williams is apparently planning to have the multiple sclerosis CCSVI surgery done.
Say it with me, "BOOK TO FOLLOW."

After MS Fall, In-Home Physical Therapy

Well, the in-home physical therapy visited Monday. What a difference a different person in the job can make! He was fantastic. He answered all my questions. When he moved my walk er to see me stand, placing the lock on, I said, "don't do that." To my surprise he said, "Oh, however you want it. I am here for YOU. This is YOUR environment." I dropped my jaw.

If only I'd heard that ONCE before from ANY medical staffer.

He tested my legs thoroughly. I tore/over stretched my glutes under my butt to knee on right leg. I did same to my right arm when I started using too large a weight too soon. But, no serious damage that 4-6 weeks won't fix. He gave me exercises and great encouragement. He explained that such a hard fall disrupts the entire body. The body is saying, "HEY!" Only time will calm it down.

I expressed my frustration that I had reached a marvelous peak and this fall took me DOWN. Then he said what I had said to my partner the night before, "This may make you go past that peak, with these exercises." And I agree. I had been planning on starting up with a PT, wanting to hear if I was on the right track or crazy---now I know and I feel damn good about it!

My standing/weight bearing was good. I'm on the right path. He also talked about the emotional impacts of a fall---so true, one gets afraid to stand, move as they had been, afraid of falling. I have never felt that way until this time. But after talking with him, I am losing the fear.

Sometimes a fall or set-back, can become a new running start. Isn't life all about how we perceive it?

Are You Ever Scolded?

When was the last time you were scolded, as an adult?

I read this question on some blog while surfing. The only thing that comes to mind is the Bridge player at my retirement home. She will never change, so I keep trying to. Just a game and now a psycho-drama (seriously psycho) as well. LOL

When my brain hears/reads--scolding, it goes straight to my mom when her (unbeknown to her) married date was courting her on our porch. I was 3 and being too verbal.

How about you? Any recent scoldings?

Life with Relapsing/Remitting Multiple Sclerosis

It is 5:23 A.M., too soon to wake up, but this is no ordinary day---today is your big interview with the boss and everyone thinks you are a shoe-in. Can't be too prepared, you have worked long hours and studied through many nights, wake up and...no...no...God, not today.

The red digital numbers on your alarm clock look fuzzy, foggy. You close one eye, look, then the other. Maybe if you keep your eyes closed until the alarm goes off, maybe you will see okay.

You shut your eyes and pray, "Please, God, not today."

The fast beating of your heart seems audible in the dark room. 5:35 A.M., you open your eyes to peek...all doubt is gone. Your MS optic neuritis has returned. You are relapsing. Fear grabs hold of you as you wonder how long this will last and how bad it will get.

By 6 A.M. you are in the bathroom, looking at your blurred face in the mirror. Is that you? It could be anyone. Vision may be disrupted in the eyes, but tears flow freely. You reach for the water glass, knocking it to the floor. You back up against the wall and slowly slide down, grasping your knees until you are rock bottom to tile and rocking. Inside you scream, "WHY NOW? WHY NOW? WHY NOW?"

That interview will be missed, along with three weeks of work. IV steroids will be administered. The runner-up will get the promotion and office gossip will say, "Too bad. She has that MS thing, you know."

In a couple of months your vision will be almost normal. But MS has stolen something from you. The relapse happened on a bad day. You have become unreliable. Co-workers, friends, family, they will be understanding in the beginning...but the truth of MS is written in those new lines on your face.

Choices must be made about how you will handle relapses. You can embrace this new unpredictability of your life's days, know and share that this is who you are, no worse a you than before, just different. Or, you can stare at the lines on your face and curse the darkness that brought them. Curse the dark, light a candle. Stay, go. Cry over the many glasses of milk you will spill, or buy a cat. HA!

Will you choose to be angry and sad that you relapsed, or happy that it didn't last forever?

Keep in mind that your choice may effect your MS. Believe that you have no control whatsoever over it and you will be on a rocky road for many years. Yes, it strikes right when we are starting to take off in our careers, starting to raise our children, starting to build a solid foundation for our future---would you rather it had started at age 5?

No, it is not fair, but no disease is. Relapsing/remitting, what manner of sick game is this?

Use your remitting time wisely. Sharpen your emotional tools. Discover your true friends. Plan your finances. Educate yourself about MS. Don't make drastic decisions during a relapse. And find plenty of time to just live as normally as you can.

MS Sucks You Finacially Dry

Still waiting to hear from Rehab people. Insurance issue. Oh, I will pay greatly for this fall. I worked so hard, so much over-time, went in early...saved, saved, saved...for THIS.

Thanks, MS.

Made in the U.S.A --- REALLY?

BUY AMERICAN!

And good luck with that.

Movie Ladies in Retirement Will Require Captioning

The plot of "Ladies in Retirement," starring Ida Lupino, included a close-up of a handwritten letter in the first scene. In the coming years, I suppose there will be captions showing what that letter says.

Our constitution will also need captions to allow future generations to read the signatures of Jonh Hancock.

Ebay your "signed" celebrity item soon.

sigh

MS Jello Legs. Recuperating is boring.

Yes, I am sick of "recuperating."

I fell. My legs are jello, my arms are weak, my brain is chillaxing (no choice of Diane's), my vision is awful---this just sucks lemons.

Recuperating: Watching TV

Watching TV: Staring at a woman wiping her eyes so that her make-up doesn't run, oh, wait, that is a mother whose daughter has been found dead. I am hooked. The courtroom attorneys, the judge, the information I've learned about computers, all somehow mesmerizing.

Look at her. She knows how her daughter died. I think of my blog friend, Sherry---your baby girl stolen from you...you don't call the police for over a month---GIVE ME A BREAK. Mothers, fathers, they ache when their children ache; they hold their breath when their children are in harm's way.

I'm trying to listen to classical music more. My TV gives it to me, I never knew. I watch Gunsmoke, James Arness just died. sniff. I am pregnant with empathy.

The Republicans are having a debate, ugh, didn't we JUST do this? No, it has been years ago. I was ending my blog, but the excitement of the first woman or African American becoming president, brought me back. I have lived in my assisted living home for 2-1/2 years already!

Sigh. I am tired.

Must we teach our children to write in cursive? Hieroglyphics. Anyone but me know now how to write in shorthand? Remember when that was an ABSOLUTE for a girl? We can't read doctor's scribbles. My own signature is far from unique and changes every day. (Thanks, MS) Time moves on. Soon TVs will be obsolete. "Phone me." "PHONE" me?? No, we say, "Call me."

Time moving is pushing me. I am not ready to move. I like where I am, where I was. Is this recuperation-depression?

So tired.

Fall Down, Heal Up, Got Milk?

Okay, I fell while resting. Yes, the irony has not missed me.

My book got a spark thanks to an Ann Rule paperback I picked up at the assisted living retirement home. (Our library is full of murder mysteries and true-life killings...making me think I need to get started on the murder mystery set here...) I plunged into it.

One week my partner's follow-up breast exam showed a FIFTY percent increase in size to her "mass." It is coming o u t. That was Monday.

Tuesday I had to play a board game with my friend here who has Huntington's Disease. We are close in age and have much in common.

That Tuesday at 11AM, I was transferring by myself from my power chair to lift chair and my knees buckled. It was my 6th fall and 1st in last 5 years. All the others gave me warning, even a few seconds, but not this one, BAM.

Let's say I went in one second into a yoga position you should not be doing until your 10th year. Straight down on knees and straight back, head to floor. ow

I screamed like a girl and partner raced out to straighten my legs, place pillows under knees and head. She knows the routine. Caregiver, nurse, both called. Medics called, arrived in 5 minutes and two strong (but not as handsome as the ones in Capitol Hill, my previous neighborhood, sorry guys---gees, I am shallow!) men lifted me into my chair.

After everyone left, I felt...strange. A bit dizzy? Fainty? Out of breath? Then my body started checking in: Arms hurt, cuts were found and cleaned; bruises were beginning and appropriately kissed. My right arm held me upright for a bit, waiting for help, and it was twitching. My ankles felt painful. (Why?) My tailbone HURT. I cracked my butt. Oh, bitter irony, thou hast me in thy perverted grip!

Aspirin. Pillows on chairs. OW.

During my job at Bethlehem Steel in Seattle, I was a security guard at the main headquarters. I sat at front desk, at PBX (for you youngsters, that was like a mini-switchboard), easy gig. One day the back of my swivel chair snapped off, sending me flying with a thud off the back of the chair, across the protruding metal post that had snapped. LOL, my glasses stayed attached to the PBX---I called for help from my walkie talkie. My guard pants were ripped asunder and my butt to neck was every color of blue/black you can imagine. This fall hurt more, left no bruising on backside. I knew that in a few days my tailbone would be fine. (DON'T LOOK these injuries up on line---you only read the scary stuff!)

Weds. was big bridge game---I had to miss it.

Thursday was a visit by one of Seattle's city council members, that I arranged, and could NOT miss. I showed up drugged out of my mind on painkillers. The council member didn't seem to notice.

Friday I had an appt. with my neurologist, scheduled months earlier. YEA!! "I have some bad news..." she began, "I am moving to Issaquah." (oops!! Must act like this saddens me...oh screw that!) "OK! Super! Well, we had a great run!" (NOT. She clearly didn't even remember me from the visits over the last 7 years. I am THRILLED.)

So, now I am resting, feeling better, but not able to transfer on my own. BUGGERS! This is a great set-back for my Walking Rehab...drat. Oh, well, such is life with MS. I am lucky I was not hurt worse and I now have a new doctor (One I have been wanting!)---I will try to get in-home rehab and start again---ONWARD!