Monday, November 10, 2008

Election Night in Our House.


(Impromptu Rally on Election Night)

I'm a realist. I believe it will take a very long time for Obama to turn things around in this country. I'm prepared for failure on many fronts. But, right now...........this day........it doesn't matter. I am filled with optimism......dare I say HOPE. Once again, I am proud to be an American. We did good!

Here's how it played out in my house. The text messages were flying all day between me and my 3 kids (all voting age). Months of discussions resulted in an palpable tension on November 4th. Would they drag their asses out to the polls? Sure, they had told me they would but, I was skeptical. But, throughout the day, one by one, they began to text me from their various locations. How long were the polls open? Exactly where was the school (their assigned poll) located? How long would it take? My daughter (away at college) was the only one I felt certain would vote without any prodding on my part. Yes, yes, I know.....Illinois is a blue state. Didn't really matter if they voted at all. Obama would get our electoral votes.

That wasn't the point. I wanted them to get excited about the political process. (Who was I kidding. They only thing I've seen my boys, ages 23 and 21 get excited about was the newest beer available on tap at Millers.) 

But, that did not deter me. During our discussions, I was passionate about the importance of defeating Mccain. I explained Roe v. Wade........the balance of the Supreme Court being tipped should Mccain win.

Turns out, my discussions with them traveled outside of our home. They each told me they discussed it with their friends and people at work. Turns out they were "getting off" debating Obama v. Mccain.

Yes, my plan worked.........all I had to do was plant the seed. Both boys texted me as they left the polling place. And, yeah.........I was pretty damn proud of them.

But what happened later gave me (and my husband) the chills. My daughter texted me about midnight from her dorm. She said there was a "riot" on campus. (Okay, she had my attention. I got out of bed and called her immediately.) Turns out........what she meant to say/text was there was a RALLY on campus.........an impromptu turnout of over 2,000 students. Her exact text was "theres a riot on campus and im going". That's my girl, I thought. I told her she was a "witness to history".....then added, "Be careful".

The excitement in her voice was amazing. She said she had never experienced anything like this. The students marched all over campus and ended up under the American flag singing the national anthem. Her final text to me was well after 1:00 am when finally I texted back, "I love you.......I'm going to bed. Be careful" (Again, with the "be careful" thing.)

So, now it's over. She's home for the weekend. The excitement has died down (naturally). But, she still says it was the most "awesome" experience she has ever had. She knows she was part of history being made.

And, no, I don't think she is permanently tied into the social conscience of America. I don't expect that she'll want to subscribe to The Wall Street Journal. In fact, as I type this she is watching something about Hulk Hogan's son being released from jail.

But, Tuesday night........a spark was ignited. The process that began the day I dropped her off at school in mid-August continues. She REALLY is having the "college experience" that I had hoped for.........as opposed to the one that involves a kegger EACH weekend, with ones best friend holding your hair back as you puke your guts out. That's not my girl. 

And my boys? Well, I am as equally proud of them. They voted. The were "engaged" in the process. They actually listened and asked questions during the past months.

But, let's face it. It's Friday night........and their off to Millers again. 

Sunday, August 17, 2008

Imagine it on your own.......


















We lay there & looked up at the night sky & she told me about stars called blue squares & red swirls & I told her I'd never heard of them. Of course not, she said, the really important stuff they never tell you. You have to imagine it on your own.

Saturday, August 9, 2008

Summer's Nearly Over......
















So, I'm "wistful" again.....what's new?

Summer is nearing its end and I am preparing to send my daughter off to college. Although I'm not prepared to dive back in to posting again, I would like to share the continuation of my essay about my daughter and her best friend. Tomorrow, we are having a cook-out to wish good luck to both of them as they begin a new chapter of their lives.

(Here's the first part of the essay......previously posted)
http://www.blogit.com/Blogs/Blog.aspx/MS_Mom/508169

And, now........as they pack up and get ready to leave............

And now, another major challenge looms before them, as individuals and friends, as they each prepare to separate from one another in order to live their next great adventure. Once again, the strength of their friendship will be tested as they will be attending different colleges.

Now, the monumental challenge becomes my own, as Rose’s Mother and Lindsey’s “other” Mother.

The little girls that I watched grow into beautiful and intelligent young women…………..poised on the precipice of a larger life…………….Just how do I let them go?

The pain of separation is now mine.

Undoubtedly, there will be wistful tears when upon waking each morning……..I realize that I won’t be listening as they make plans for lunch……..or shopping……or gathering in the evening with friends to watch their favorite shows.

But, as difficult as it will be for me to watch them go…………I will breath easier knowing that the many years they have spent nurturing and refining their relationship has given each of them strength beyond measure and the ability to trust in the resiliency of a solid friendship.

And so I would like to tell each of them this………….

My dearest Rose and Lindsey,

Your life is a special gift that no one else can live for you. Believe me when I say that you have brought me joy beyond measure throughout these years.

I wish you strength to face challenges with confidence along with the wisdom to choose your battles carefully. I wish you a world of adventure and also the serenity that comes from listening to your inner voice.

Promise me that you will discover yourself………..and be happy. And I will promise to offer you any help you might need to make your dreams come true.

Love,
Mom

Saturday, May 31, 2008

You're Gonna Miss This............


My daughter Rose graduated from high school last night. She walked with her graduating class of nearly 600 students, even though she officially completed all her courses one semester early. (She said she wanted to "get a jump" on college classes.) So, she's been out of high school since Christmas and wasn't really sure she wanted to go back and participate in the ceremony.

I was always prepared to go along with whatever decision she made regarding "walking" with her class. I understood her feelings. By the time February rolled around, she had already moved on, and disconnected from most of the people that she associated with during her four years there. It seemed that she was definitely finished with this chapter of her life and looking forward to the next.


And, I’ll be honest. I was more than willing to accept her decision not to attend the ceremony as evidenced by the fact that I never tried to talk her out of her decision. Having MS has made certain things much more difficult for me. I just don’t do well in large crowds, especially when I know I will be forced to sit for hours and hours (on wooden bleachers) listening to valedictorians wax teenage angst about “life being a blank canvas”. Invariably, my body will start to heat up and (doesn’t matter what the air temperature is) this “heat” will travel to my head/brain (don’t ask me what specifically goes on “up there” when this happens), which results in dizziness and disorientation. So, it was more than okay with me to just skip it.


In the end, she decided she would attend the ceremony. Something pulled her back: I’m not sure what. I suspect it had something to do with the realization that this was a once in a lifetime event and maybe she shouldn’t be in such a hurry to move on. It was perhaps, her first experience with nostalgia, which, as defined by dictionary.com means:


"A wistful desire to return in thought or in fact to a former time in one's life, to one's family and friends; a sentimental yearning for the happiness of a former place or time."


Yeah, without a doubt, that’s what it was…….”a wistful desire to return”. And, now that it's over, I'm delighted she did. It was the right thing to do. And, not just for Rose, but for me also.


You see, Rose is the last of my children to graduate high school. And, prior to last night, I was thrilled at the thought that this chapter of my life would finally be over. The former Catholic in me was saying, “Thank god”. I was ready to close the door on all things “high school”, from pep rallies and sports physicals to drivers ed., prom and ACTs.


But now, I’m just sitting here in this chair, writing this and replaying in my mind the song that the Graduating Class of 2008 chose as their theme:

Cause you're gonna miss this

You're gonna want this back

You're gonna wish these days hadn't gone by so fast

These are some good times

So take a good look around

You may not know it now

But you're gonna miss this.


It gives me the chills…….this thing called nostalgia……….cause, ya know what? I am gonna miss this.

(Song by Trace Adkins)

Friday, May 2, 2008

I Don't "Do" Yellow.


I had my first treatment with Tysabri, the newest drug on the market used to battle MS. It’s a once-a-month infusion (IV hook-up), administered in the doctor’s office. When my doctor talked to me about this new drug, he said “it will stop MS in its tracks”. However, I was still hesitant and had been vacillating for the past year as to whether I should switch from my Avonex (weekly injections) to Tysabri. I felt like “if it ain’t broken, why mess with it”. But, recently I have noticed that my feet are numb more often and there is increased spascicity in the muscles in my thighs. spasticity

Tysabri was first approved in 2004 but was temporarily taken off the market in 2005 over concerns about a serious brain infection, known as progressive multifocal leukoencephalopathy (PML). It seems that three patients developed the disorder, characterized by destruction of the myelin sheath that covers nerve cells. To put this in everyday language, the brain deteriorates. There is no cure for PML, nor is there currently an effective treatment. The course of PML is relentlessly progressive. Death usually occurs between 1 and 4 months after onset.

However, my doctor reassured me, telling me that the patients whom died from this were on an additional MS treatment and that it was the TWO TREATMENTS in COMBINATION that caused the PML. So, in the end, I felt better and decided to switch to Tysabri.

Now, today I read a report on the internet that Tysabri is also be linked to liver damage in some patients. In a letter to all physicians prescribing Tysabri, BIOGEN (manufacturer of Tysabri) reports that there have been “clinically significant" reports of liver injury in patients being treated with Tysabri. The letter instructed doctors to stop drug treatment if patients show signs of liver injury including jaundice. (What is jaundice?)

A Biogen spokeswoman, said the rate of liver injuries is less than one in 1,000 patients. As of the end of December, about 21,000 patients had been treated with Tysabri. None of the injuries required a liver transplant, she said. (Oh, I feel so much better now.)

Okay, here’s where I start getting “creeped out” and my skepticism takes over. Can I trust the BIOGEN SPOKESWOMAN? Is the spokeswoman for biogen an ADVOCATE for the PATIENT or is she an ADVOCATE for the PHARMACEUTICAL company.

My suspicion is magnified due to the fact that I had already know that there was a class action lawsuit filed when Tysabri was first pulled from the market.

Due to this lawsuit, shares of Biogen fell 42.44 percent, on unusually high trading volume. Later, claims were made of insider trading at Biogen when Thomas Bucknum, Executive Vice President and General Counsel began selling his stock ON THE DAY THE TYSABRI RECALL WAS ANNOUNCED.

Now, this is what really pisses me off; that I am forced to consider whether to pursue a course of treatment that could KILL ME and then read about what effect this drug has on the market and ultimately……SOMEBODY’S BANK ACCOUNT.

So, what should I do? I feel like I’m sitting here, keeping my fingers crossed that the Tysabri doesn't kill me. Quite honestly, I doubt I’ll lose any sleep and I certainly won’t spend my days obsessing over anything negative that might happen. Why would I? What can I do about any of it? It is what it is. (This is the new ZEN me.) It’s not like I can stop treatment completely. I have to choose ONE and each carries its own risks (as do ALL medicines).

I have been with this MS Center (one of the best in the country) and with a doctor that I trust implicitly since I was diagnosed in 2000. I ask questions, I do my own research and (with the help of my husband), I carefully consider all my options. And, we both agree; having NO TREATMENT is NOT an option, it just isn't.

And now, my husband and I, we're just sitting around waiting to see if I start turning YELLOW.

Sunday, March 30, 2008

Good Vibrations...Is This What The Beach Boys Meant?


The other evening, I was lying in my bed watching television, which is my normal nightly routine before I fall asleep. I usually watch the Jon Stewart Show.....or at least I begin to watch it and usually doze off before it ends. On this night, I could not fall asleep because I was hearing a noise that, at first, sounded like a motor running outside. It was driving me crazy. I got out of bed, walked around the bedroom, opened all the windows one by one......hoping that the source of the noise would become apparent. Well, it was not a car running.

I remember hearing a similar noise last summer before the electrical transformer behind our house "popped", plunging most of our block into darkness. It made this "buzzing" sound that was extremely irritating........kinda made my insides "buzz" also. (Seriously, due to my MS, my "system" is somewhat sensitive to certain sounds, sensations, etc.). Well, it was not the transformer.

Again, I remembered the many times that one of the kids left the X-Box video game running......it gave off a rather constant, again IRRITATING vibration. Also, on occasion, my son's computer vibrates rather loudly (for a computer, I mean). It's on it's last leg and sounds like the hard drive is getting ready to crash. So, I walked around the house checking for possible "sources" of the vibration........no luck.

My husband was watching me walk in and out of each room.......back and forth.......turning things on and off. He asked me what I was doing. I asked him to come in the bedroom with me. He said, "Right this minute".............I said, "Yeah, right this minute". Now, HE was irritated, since he was in the middle of his own video game (Warcraft) and it's not the type of game where one can just "get up and go"..........takes awhile to log off, etc. But, he could see something was bothering me.........so he obliged me and followed me into the bedroom. I said "Do you hear that..........can you FEEL that? Something is making a noise......I can't fall asleep." He listened for a moment...then proceeded to do the same things I had done.........open windows..........check television, etc. He even made a quick check of things in the back yard.

Now it gets funny. While he was in the yard, I sat on the bed..........and........I swore the bed was moving. So, when he came back in the bedroom.............I said "Here, feel the bed". He put both his hands on the mattress...........(Ok..here's where I start to feel stupid)

He looked at me...........like.....HEY, GENIUS! Seriously, he was INCREDULOUS......he said "The BED is VIBRATING".............."Yeah, i know", it's making me nuts." Finally, he said, "IT'S YOUR VIBRATOR........WHERE IS IT". I screwed up my face and said "What?" Then, I stopped to think. I remembered; I knelt down and reached both my hands in between the mattress and the box spring sweeping them right to left........and VOILA........I pulled out my forgotten silver "bullet" vibrator which somehow had managed to turn itself on. I'm guessing that the many, many months it spent under the mattress with so much "activity" on top of it had caused enough movement for the end of it to twist to the "on" position.

I had completed forgotten that I had moved it from its original hiding place in my nightstand after I had found my daughter rummaging though the top drawer looking for make-up remover or something like that. I figured I had better put it somewhere more "secure". "Nice job"........my husband said, grinning. I smiled back at him and said, "Thanks, honey.......you're my hero" I turned it on......as high as it would go and, blowing him a kiss, smiled and said..."You can go now".

Friday, January 11, 2008

Put on your big girl panties.......


I see I have drifted away from writing about my Multiple Sclerosis here and it does not surprise me. Ever since being diagnosed in 2000, I have found myself NOT talking about it much.

Originally, I thought it was because I didn’t want to be one of those people; you know the type. At the drop of a hat, they will tell you all about their skin lesions, hot flashes and itchy vulva. (Please Mom; no more…I never want to hear you use the word vulva again.)

For some reason I have always been more focused on those people who really have it hard; people with illnesses that are sure to cut short their lives or those living with chronic diseases that prevent them from living a normal life. My favorite singer/songwriter Dan Fogelberg died of cancer a few weeks ago; out sailing his boat all summer and dead by Christmas. So, I say to myself; what have I got to complain about?

It’s a personal philosophy for living life. One of my favorite movie quotes is “Get busy living or get busy dying” from The Shawshank Redemption. That pretty much says it all.
Better still, here is a picture of a plaque that hangs in our bathroom (above). You can’t miss it. I placed it there intentionally as a message to my children.

Now, I oftentimes hear them saying it to one another. I also hear it being thrown around the firehouse where my husband works ever since he made a copy of it and hung it on his bulletin board in his office.