New Orleans Archive

12

A Vacation To Remember (Part 2)

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“You’re going to go through tough times – that’s life. But I say, ‘Nothing happens to you, it happens for you.’ See the positive in negative events.” ~ Joel Osteen

I could feel something cold and wet underneath me. I didn’t have my glasses on, so I really couldn’t see. But I could smell blood. I haven’t worked as a nurse in years but I am still able to identify that stench.

My vision was blurry but the familiar sounds of heart monitor and blood pressure machines helped me realize I was in an ER. Luckily I remembered passing out so I wasn’t alarmed to be waking up in a hospital.

I could sense someone was in the room with me. Then I recognized it was a nurse. He told me his name and said the doctor would be right in to talk to me. I asked him what day and time it was; he said it was 6am Saturday morning. As the nurse changed my bloody sheets and bed pad, I asked if my husband, Tommy, could come in. He said there was no one in the waiting room but he would keep an eye out for him.

A doctor entered the room and introduced himself. He explained they really didn’t know what was wrong with me. My blood pressure had dropped dangerously low and I was bleeding in my catheter. I asked him when he thought I could be released? He said if everything went well, I could go home maybe by Sunday.

What! Sunday!

I am sure I sounded like a crazy person but all I could think to say was, “But I’m seeing Oprah today!” He laughed and said she would have to wait until I was doing better.

When the doctor and nurse left the room, I was all alone with my thoughts. I began to feel helpless. I didn’t have my phone, my purse, my ID, my glasses, and no one knew where my husband was.

But then suddenly, I began to think about all the things I learned and the inspirational people I met at the event only hours earlier. I thought about Amy Purdy who had both of her legs amputated below the knee. She became a Paralympics athlete and competed on Dancing With The Stars. She didn’t give up. She stayed strong. I told myself, “If she can do it so can I”.

And guess what? Thinking about her, made me feel better.

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A few minutes later, the nurse came back into the room and said my husband had arrived. I later found out Tommy had gone to the wrong hospital. EMS told him to drive and meet me at a hospital near our hotel but that hospital turned us away because of a shift change. So I was taken to a different hospital. Tommy drove to the original hospital and once he got there, the ER had no record of me being admitted. So from 3am to 6am, he was trying to locate me. Thank goodness he finally did. I was so happy to see him. He also remembered to bring my eye glasses and purse.

After talking to the doctor again, we sat in the ER for two more hours waiting for my circumstance to change. We were exhausted. Both of us had been up for more than 24 hours, not counting me passing out. The bleeding had stopped and my pressure was at a normal level. The doctor told us, I would be able to leave ASAP. I was discharged Saturday afternoon. All I could think was, “Oprah here I come!”

After signing my release papers and getting dressed, Tommy helped me to my feet. As soon as I stood up, everything went black. I passed out.

When I gained consciousness, the first thing I could see was Tommy signing my readmission papers. He then told me, I was going to be moved from the ER to an assigned bed in the hospital. Once I heard that, I knew my short hospital visit had turned into an indefinite stay. To make things worse, while waiting, the bleeding started again and I began feeling light headed.

Once transferred into a room, things were a little more comfortable. My Saturday and Sunday were filled with friends visiting all day. A couple even stayed overnight. By Monday, I was ready to be home. My bleeding had stopped and everyday after that I was told I would probably leave the next day. It was always something that prevented them from discharging me.

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Monday my blood pressure was too low. Tuesday my heart rate slowed down too much. Wednesday my blood count was off target and I was given 2 units in a transfusion. My release was also based on my ability to handle the six-hour drive from the Houston hospital to my home in New Orleans.

Finally Thursday, I was feeling great and everything seemed to be back to normal. They gave me one last check then I was given the all clear. We drove to New Orleans Thursday night and I was so tired after the ride.

I was in the hospital from Friday to Thursday and they still don’t know what was wrong with me. But overall, if I had a chance to do it again I would. Because the good that happened on this vacation outweighed the bad.

11

Living On The Edge

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“Every man has his secret sorrows which the world knows not; and often times we call a man cold when he is only sad.” ― Henry Wadsworth Longfellow

I feel as if I’m slipping into depression. I know the signs. Not only because I’m a nurse by profession but also because my own father has dealt with it the majority of his life. Over the years, he’s come a long way. Of course, if you ask my mother, she may have a different story to tell. She’s the one who has to live with him everyday.

So, I have been proactive about this slide down hill into that unforgiving black hole. I returned to my psychiatrist. I’m trying to avoid sleeping all day. And I started reading again.

What made me even realize I may be having a problem is my support group leader asked the question to everyone, “What do you do to improve your quality of life?” I personally had a list of answers, which included therapeutic horseback riding and visiting the local gym as often as possible. But these things don’t always work because when it’s raining there is no horse back riding. And here in Louisiana, it’s always raining. Plus, sometimes I just cannot make it to the gym because of other obligations or I’m just too tired.

And although I have my husband, I just get plain old lonely. It seems as if the lives of my friends are rolling along smoothly. While I’m stuck, stuck in the muck of multiple sclerosis. And it stinks.

I haven’t been doing the things that I usually enjoy. For example, it took a lot for me to even blog today. I spend a lot of time resenting those around me that are physically able-bodied. This is wrong, selfish, and unhealthy for me. And I know this. But that’s how my mind works when I’m living on the edge of depression.

10

The Power Of The Chair

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“Never worry about numbers. Help one person at a time, and always start with the person nearest you.” ~Mother Teresa

I own two power chairs. One is portable and the other is heavy-duty. Due to limited space in my home, the heavy-duty chair has been stored at my parent’s house. I never use it and it just sits in their dining room taking up space. My parents didn’t mind it staying there, but it bothered me. So last week I decided it has been at my parent’s house long enough and it was time to sell it.

So, what did I do? I took some pictures of it and tried to sale it on Facebook. I thought it was a good idea, but apparently…no one else did. Not one call.

Plan B was to give it away. I wish I had done that from the start.

I connected with my local MS Society and they gave me some leads of people who were in need. After a few days, I was able to connect with a fellow MSer who needed a power chair.

I recruited my dad to handle the specifics and the actual transfer of the chair. He’s good with that kind of stuff.

The man resides roughly two hours from my parent’s home, but was happy to make the trip. He was so appreciative.

Who knew how rewarding helping someone would be.

13

Therapeutic Horseback Riding

I am back at the farm for another season of therapeutic horseback riding.

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I ride until August, then we take a couple of months off because of the heat.

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It cost $25 and I go once a week.

I really love it and recommend it to everyone.

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Meeting my new horse. (Video)

31

A Friend Indeed

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“Alone, all alone
Nobody, but nobody
Can make it out here alone”
– Maya Angelou

Lately, I have been feeling down. Unfortunately this is nothing new. Two to three times a year I go into a “funk”. Not sure what it is but I really hate when it happens.

I mentioned this to my MS support group and after hearing about my troubles, a fellow MS group member, invited me to hangout with her for the weekend.

Sue, who has become a good friend and confidant, recommended we attend the New Orleans Oyster Festival. I agreed and we set a time and chose Sunday as the date.

Once the big day came, I was so excited. As soon as I woke up I began getting ready. As I was putting on my clothes, I could hear the patter of rain on my bedroom window. I looked outside and sure enough it was raining. I felt like crying. Then the phone rang. It was Sue. I just knew she was going to cancel. I answered the phone with a melancholy hello. She ecstatically answered back, “You ready?”

I said, “Sue, it’s raining.”

She replied, “If MS can’t stop us, how we gonna let a little rain stop us? Girl, put on a hat and let’s go!”

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So we met on the Riverwalk in the rain. We were able to find some shelter and settled in to eat our charbroiled oysters and shrimp po’boys. The sun even peaked out and gave us a thirty-minute reprise so we could see the bands play music and watch an oyster-eating contest.

On the way home, I just felt so happy. Yes, my issues were still present but for a little while I was able to escape the worry and tension that always accompany my problems.

It’s funny how friends and family can come through just when you think no one cares. Yes, a friend in need, is a friend indeed.

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23

Parade Days

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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)

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34

Half-Full

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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.

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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)