Archive for April, 2011

18

Curtain Call

opening night

WELCOME

Independence is just out of my reach, but it’s the one thing I foresee granting me control, which in my world is symbolized by driving. It equals autonomy and self-sufficiency. As you may guess or remember from earlier posts, my doctors banded me from the world of drivers. The days I cry. The days I mope. It’s usually because I can’t do________. You can fill in the blank. Because, now 11 years into my diagnosis, it amounts to a multiplicity of things. Things I could once do. Things I silently weep for. But please don’t misunderstand me; it’s in no way the entirety of my being. This MS is heart wrenching, but I am hell bent on not letting it get the best of me. I choose to live accommodating whatever disability appears center stage…..reluctantly!!

Just like anybody else, I have my good days and I have my bad days. The point here is just that at the end of any given day I can’t DRIVE. UGGGHHHH!!!

That's the FJ I must be out to lunch!

I haven’t sat in the drivers seat since 2009. As is so happens, I lost many physical abilities then. But none has been as impactful as losing the powers to snatch my keys and go wherever I wanted. I didn’t have to tell anybody. I didn’t have to rationalize anything to anybody; I was a 34 –year- old woman who only owed an explanation to my husband. I could even call that one a courtesy! I want to make the decisions. I want to be responsible for more than the towels around here!

 

Now the wheels are turning. Things are happening. I’m going to physical and occupational therapy on a routine basis. The possibility of driving once again (with hand controls) slowly draws nearer.

 

I wonder if I’ve placed too much hope on driving restoring the complete independence I crave; control as I see it, that will ultimately lead me back to happiness. I’ve read numerous places that anytime we look for one particular thing to “fix” us we set ourselves up for disappointment. I hear placing this lofty of an expectation on anything is dangerous. That is, placing it on anything outside of ourselves; anything tangible. It’s similar to betting it all on black in Vegas!

 

I’ve done it with many things through out my entire life span. In grade school it was a Barbie then a 10 -speed Schwinn bike. Later, grades worthy of a sizeable college scholarship, a car (any car would do) and an apartment. Moving forward, a lucrative career.

Thanks for comin' out! Please come back!

 

Only for the curtains to close and I am still left with whatever it is I already had!

 

12

Lexapro

Depression and Multiple Sclerosis

I thought I could never run out.

 

According to www.webmd.com/multiple-sclerosis/guide/ms-depression.

Depression is very common in people with multiple sclerosis (MS). In fact, symptoms of depression severe enough to require medical intervention affect up to half of all people with MS at some point during their illness.

• Sadness
• Loss of energy
• Feelings of hopelessness or worthlessness
• Loss of enjoyment from things that were once pleasurable
• Difficulty concentrating
• Uncontrollable crying
• Difficulty making decisions
• Irritability
• Increased need for sleep
• Inability to fall or stay asleep at night (insomnia)
• Unexplained aches and pains
• Stomachache and digestive problems
• Decreased sex drive
• Sexual problems
• Headache
• A change in appetite causing weight loss or gain
• Thoughts of death or suicide

**********************************************************************************************************************

At times, I can check off too many of these symptoms. But my guess is… many of us can!
The question is… what do I do now?
For one, I can run (figure of speech) to the drugstore and refill my medication (anti-depression medicine) as I’ve been out of it for two days! Listen people, I hate to sound like a drug pusher, but for me, that stuff really works. One or two days without it and I’m lying in bed hiding my tears! On a good note I recently realized Walgreens now does three month prescriptions. This alone is life-changing. Remembering to mail off for refills is hard to say at the least.

Plus, apparently I really need it!

So, under the circumstances, I’m going to send my hubby to Walgreens (it’s open 24hrs) and keep myself busy folding these towels next to me!

It’s 2 am. • Inability to fall or stay asleep at night (insomnia) Check.

My next Laughter Yoga class is Saturday (flashback). I’ll let you know how it goes!

Until next time.

11

Lesions

Dr.Lovera

Dr. Jesus Lovera of Louisiana State University Health Sciences Center in New Orleans, La

I went to see my neurologist. I’ve mentioned before how these visits are usually stress-ridden experiences, which again makes no sense, because at this point I AM living what was formerly my worst nightmare. Put in a different way, this horrendous dream has become my present day reality! Mind-blowing!

AFO (ankle-foot orthosis)

My first AFO (ankle-foot orthosis)

 

AFO

The beginnings of my custom AFO.

 

 

Ankle-foot orthosis: A brace (usually plastic) worn on the lower leg and foot to support the ankle, hold the foot and ankle in the correct position, and correct foot-drop. Abbreviated AFO. Also known as a foot-drop brace.

This visit my imagination was equipped with potential neurological instruments that I envisioned propelling me back into the land of  “the walking.”


[youtube]_kqO5jONtDo[/youtube]

 

These Bioengineered devices  like the WalkAide and the NESS L300 are legitimate, just not for me…not right now at least.

I’m the kind of lady that salesmen love. After all, I am a nurse with a sales mentality!

[youtube]WAaKYXAsP6I[/youtube]

 

Okay, don’t fret. I still stand by my mantra of accepting new “normals,” but that doesn’t make things easier or smoother. (Click here.) Remember, it’s the transition into that normal that is the hardiest.

When I asked the doctor how many lesions (white splotches). I had on my brain and spinal cord and he responded with, “too many to count!”

I thought I would lose it right there on his exam table!

In the midst of my impending full blown mental breakdown, my husband once again pointed out, “The only difference between today and yesterday is the fact that you now know.” This is his go to rationalization, as he used it 11 years ago the day I was first diagnosed too!
Worked then and saved the day today too!

Which once again in an odd way, if right now I’m living with MY worst nightmare recently known as, “too many lesions to count.”

I guess I’m tolerating this new normal quite tenaciously.

Who knew?

 

The finished product...neat color! Ya think? This IS my new normal.

10

Clown tears

[youtube]mbHMK-fNlYw[/youtube]

 

Tears of a Clown by Smokey Robinson

Now if there’s a smile on my face
It’s only there trying to fool the public
But when it comes down to fooling you
Now honey that’s quite a different subject
But don’t let my glad expression
Give you the wrong impression
Really I’m sad, oh I’m sadder than sad
You’re gone and I’m hurtin’ so bad
Like a clown I pretend to be glad

Now there’s some sad things known to man
But ain’t too much sadder than
The tears of a clown, when there’s no one around
Uh hum, oh yeah baby

Now if I appear to be carefree
It’s only to camouflage my sadness
And honey to shield my pride I try
To cover this hurt with a show of gladness
But don’t let my show convince you
That I’ve been happy since you
Decided to go, oh I need you so
I’m hurt and I want you to know
But for others I put on a show, ooh yeah

Just like Pagliacci did
I try to keep my surface hid
Smiling in the public eye
But in my lonely room I cry
The tears of a clown
When there’s no one around, oh yeah, baby baby
Now if there’s a smile on my face
Don’t let my glad expression
Give you the wrong impression
Don’t let this smile I wear
Make you think that I don’t care

************************************************************************************************************************************************************************************************************************************

“I’m not hurting due to lost love. I’ve lost myself.”

The Social Worker I see, knowing my personality, recommended Smokey’s lyrics when I asked her, “When should I get over my whole life turning upside down?”  She acknowledges my lost. It hurts. I can’t dress that up. Sometimes I get angry at whomever is in my path. I hate that my key chain only has one key–..to our residence. I’m jealous of those who can walk. I’m resentful of those who can work. Horrible I know.

 

But then like Smokey (We’re on a first name basis now.) says, “These are only times, fleeting moments.”  The majority of time you wouldn’t know the loss I live with, because I’m trying to move forward with it… in my back pocket!  I have to.

 

Unless you are my husband or my mama, no one sees these fragile moments. I do my best to hide them. Bury them. I do my best to deny them from myself too!!

 

It haven’t driven or worked full-time since 2009. Some say, “Big Woo. Get over it!!”  “Honestly, that sounds reasonable to me!  It’s just so hard.”

 

“So, when should a young, successful, childless, married women with a promising career and only opportunity ahead of her get over losing the things that matter most to her?

 

Her answer,

 

 

 

 

 

 

 

 

 

 

 

 

“You don’t. You adapt.” she said.

Damn. I knew that!!!!!!!!