New Orleans Archive

23

Parade Days

mdw0031-228

Last week I was in the hospital for two days after having an adverse reaction to my latest prescription. The symptoms were so bad that the doctors first thought I had a stroke. It wasn’t until all of my test came back negative that we linked my sudden change in health to the new medication.

Before this happened, I was excited because it is Carnival time. I have been going to Mardi Gras parades in New Orleans, Louisiana for over 30 years. But this year just wasn’t the same. I can’t put my finger on it but I didn’t have as much fun as usual. My guess is, since I really hate being in a wheelchair, being at a parade in a wheelchair just wasn’t enjoyable. I don’t like when people stand in front of me blocking my view. It’s funny because everyone is nice until the floats start throwing trinkets. Then it’s every man for himself. Also, bladder issues can cause a real headache especially since the portable restrooms provided by the city are not wheelchair accessible.

But my best guess at the source of my newfound melancholy feelings toward attending parades is the fact that I have been extremely tired lately. I am so weak these days that it’s hard to enjoy myself at events, especially ones that take so much energy. Parade days are all-day affairs that can last 5 hours or more. And there are usually multiple parades. The recent one I attended was actually three different parades. This is something I did all the time, but nowadays it’s just too much for me. And being only one day removed from the hospital didn’t help either.

After I made it home from the parades, I decided I would not attend anymore because they are just too taxing on me.

Moments later, following my declaration, I saw a picture posted by Steve Gleason* at a Mardi Gras parade. He helped me put my overreaction into perspective. So now I have decided that I won’t totally stop attending Mardi Gras parades. I’ll just adjust how long and how many I attend.

Happy Mardi Gras Everyone!

*(Steve Gleason is a former New Orleans Saints football player who is now battling ALS – Lou Gehrig’s disease)

Gleason

Hospital

1780634_642577382466668_1474284473_n

549097_642578712466535_1507202617_n

1975033_642578075799932_129121678_n

34

Half-Full

glass half full

Love them or hate them, pharmaceutical drug companies are here to stay. The odds are that if a cure is ever found, it will be discovered by a drug company.

For that reason, I decided to take an offer to attend the first MS Patient Blogger Advisory Board meeting hosted by Novartis Pharmaceuticals Corporation. I was surprised they asked me to attend because I no longer take their MS drug Gilenya, but I was very honored they did. They paid for me to go to Morristown, New Jersey and be a part of the advisory board. Don’t worry, I’m not going to try and sell you on the benefits of using Novartis products. As a matter of fact, to my surprise Novartis really didn’t talk too much about their company’s products. The focal point of the event was the accuracy of their marketing in meeting the evolving needs of MS patients.

Along with a group of eight other MS bloggers, I was asked for input on communication needs within the MS online community and feedback on some of Novartis’ social media channels. It was interesting to find out how drug companies work as far as marketing and the government guidelines they have to follow.

IMG_0758

As far as the trip itself, it turned out pretty good considering that traveling can be a challenge for me. My husband, Tommy, and I went from 55 degree New Orleans to 7 degree Morristown, New Jersey. Yikes! We flew United Airlines, so that meant I had to use an aisle chair to board the airplane. It wasn’t so bad this time. I think that’s because I know what to expect now. Once we got to New Jersey, I was nervous because there was snow everywhere, which was a problem because I was using my scooter and it isn’t waterproof. So I was happy to find out that all the events would be happening inside our hotel and we would not have to venture out into the snow that much. The hotel was also connected to a mall so that made me really happy.

The best thing about the event was that I got a chance to give my input to a company that is searching to find a cure for MS. The only way to change what we think is wrong with pharmaceutical companies is to engage with them and if they initiate the conversation that means they may actually listen to the suggestions. I believe pharmaceutical companies engaging with patients is a positive step. Yes, it’s about profits but by exchanging dialogue with them, maybe we can make it more than that. So when it comes to pharmaceutical drug companies I will look at the glass as half full and not just consider them as the big bad wolf.

I also got a chance to put faces to the names of bloggers I have been reading for years. It was an honor to be amongst peers that not only understand but are also going through the same things as myself.

Check out my fellow attendees and their blogs:

·Dave Bexfield – Dave’s Active MSers Blog
·Jamia Crockett – My MS Heels…My MS Heals
·Jeri Burtchell – Partners In Research
·Joan Wheeler – A Short In The Cord
·Jodi Bean – Jodi Bean’s Blog
·Jon Chandonnet – Jon Chandonnet
·Lisa Emrich - Brass and Ivory and Carnival of MS Bloggers
·Matt Allen – Matt’s Multiple Sclerosis

Nicole with Lisa Emrich (Brass and Ivory, Carnival of MS Bloggers)

Nicole with Lisa Emrich (Brass and Ivory, Carnival of MS Bloggers)

Nicole and Dave Bexfield (Dave's Active MSers Blog)

Nicole and Dave Bexfield (Dave’s Active MSers Blog)

34

A Night Out

dixie-beer-sign-tipitinas-new-orleans1-1024x674

The other night my husband and I went on a good old fashion date. We left my MS with a sitter and headed to a concert at a local nightclub. Of course, I was in my ever-present handy wheelchair decked out with mountain bike wheels. I was also in a good mood and ready to take on the winter air.

We arrive at the club. We are early and due to my wheels, they put us first in line. When the doors opened the guards ushered us straight in. Subsequently, we had first row standing room only positions. I was thrilled. I was proud of myself for even going. I left the confines of my laptop and condo. My biggest worry was keeping my bladder in check.

The night began with a local female disc jockey. For some reason I felt a shared feminine connection. She was dong what she loved to do, despite the odds that stack against her. I like to think, I am too.

An hour later, the funk star, George Clinton & Parliament Funkadelic, arrived and nonchalantly passed directly in front of us! For those of you who are unfamiliar with his iconic status, the closest person I can compare him to is the late great Rick James.

Within minutes the house was packed. Still, George Clinton himself managed to greet me in person. It was the highlight of the night. Really, I think his security detail was concerned about a possible stampede.

George Clinton, “The Atomic Dog”, stopped to talk to me.

I’m not claustrophobic, but even the most stoic of us would have been a bit taken aback. Not even the oh so strong smell of marijuana could keep me calm. Since I was sitting, I felt that people were engulfing me. I think my husband saw my level of anxiety rising. He gently grabbed my hand; something he seldom does, in this case it only confirmed we were in a sticky situation.

A little over half way through the show we decided to leave. We received special permission to exit through the artist only door. There was no way we could make it back through the crowd to the normal exit.

After all, an hour and a half was good for me. I was drained. I met George. I was ready to go; besides, I had to go to the restroom!

IMG_0722

IMG_0713

46

All Is Well

Well being and happiness

I can remember years ago when the focus of my life wasn’t multiple sclerosis. There was a time when I wrote emails that didn’t pertain to MS and the subject didn’t dominate my every conversation. But unfortunately those days are over.

It bothers me that my “new” life is all about MS. Sometimes I forget that there’s more to me than multiple sclerosis.

I use to think it regrettable that you guys didn’t know me before MS. I was so active. But now that I think about it, I’m still very active. It’s just a different type of active. I participate in riding horses on a local farm. I’m even presently seeking out more MSers to join me through the National MS Society. I do modified physical workouts, I study the Spanish language, I blog and write and I read incessantly. Lastly I watch as much TV as I can fit into my schedule. I’m not sure if that’s good or bad.

So, what do you do in your free time?

If the Culture Doesnt Work Dont Buy It

I wanted you to know that life is not all bad. We may have to plan a little more than others, but life is not all bad. The horrible stuff just makes for better reading.

Thanks to you guys, I now know that the woman I am beneath the MS continues to shine through and most importantly that there’s more to us than multiple sclerosis!

48

Unbearable Guilt

Fatigue is my worst enemy.

The “Big Game” better known as Super Bowl XLVII, was played in my home town of New Orleans. Specifically held in the Mercedes-Benz Louisiana Superdome. A fun event right? Well, it was supposed to be.

Tommy, my husband, thought so and was understandably pretty into the entire affair. It was only one game but the NFL (National Football League) had drawn it out to a week-long Sunday to Sunday party. I mean Tommy had planned out a pre-game itinerary of events for us. We had free tickets for a number of things. He’d even ensured they were handicap accessible. The other day he  got us in the audience of The Craig Ferguson Show that was being tapped in New Orleans. What a rush! It came on right after the game so I hope you saw us

The Super Bowl, in case you didn’t know, happens once a year and the two best teams in the United States are groomed to play one incredible game of NFL football. This year it was the San Francisco 49ers against the Baltimore Ravens. At this point the game has been played and won by the Ravens.

The problem we had was I ended up causing us to miss out on a few functions. I slept through events. I complained about the cold temperatures and early morning shows. I was tired the majority of the time. This MS (multiple sclerosis) body can only take so much. The fatigue wins every time. I have limits. I’m use to this. I just hated to disappoint Tommy.

I know he understands, but the guilt is almost unbearable!

This was on a good day.

19

Higher Ground

HURRICANE EVACUATIONS in Louisiana are in place! So sorry, we won’t be able to post this week since we live in New Orleans, which is below sea level. As much as I love this historic city I’m gonna have to leave and flee for my life! I’m being serious but a little dramatic.

When these type of things happen I usually leave early because it is so hard for me to pack. Not only do I need normal things like clothes and my toothbrush but I have to make sure I have all of my medicines, my walker and my scooter. I really hate this because the stress plays havoc with my MS.

But if all things go smoothly, which they probably won’t, we’ll be back up and running by next Tuesday. For now I’m packing and praying!

So I will talk to you guys next week and hopefully all will be ok in New Orleans.

46

A Painful Lesson

It’s funny how our brain can sometimes play serious tricks on us. But there are just a few things we some how need to be reminded of every once in a while. In the midst of a personal pity party that I held just this morning I said to my husband, “I feel like I don’t have purpose.” He responded, “When’s the next time you go to the psychiatrist?”

This particular party was held after I woke up and had no place to be. It dawned on me that nothing seemed to depend on my presence. To be more accurate, I had no job to report to. You see the last career I had I held in high regards. Though I wasn’t a surgeon that saved lives, I took pride in my job. My life revolved around it. I guess I thought it gave me purpose.

Due to Multiple Sclerosis, I was forced to leave my career behind. So where does that leave me? What’s the appropriate amount of time I should bemoan its loss? Because at this point I haven’t worked or driven a car since 2009! You probably know that as I remind us both constantly.

I forgot that though I’ve exited the structured working world, I have still maintained my worth. Thankfully a good friend reminded me of that. Thank God for friends. I totally dismissed the advocacy work I’ve done with the National MS Society. I know I’ve affected lives with them. I also completely overlooked my impact here with this website! Something that started out as a safe place to go and vent has turned into so much more. You move me. You humble me. You give me purpose.

I’ve been taught to shy away from thinking that something outside of myself gives me purpose. Similar to the way I did with my former career.

Thanks for helping me learn that painful lesson.