Rooms With a View

RELAPSING~

I am currently having a small MS relapse. I caught it early and do not have to be in the hospital. I have had two Salumedrol treatments and hopefully I will be fine in a couple of days! No posting for a few days.

THIS IS WHAT SWINE FLU LOOKS LIKE~

I am writing this post on a rainy Sunday night. Tomorrow, Monday is my Tysabri treatment which will give me a lovely headache for a few days. Thank goodness my beautiful daughter Vinny loves to cook. She will be in charge of Thanksgiving dinner.

I meant to post these photos last week and forgot. Here is what Mitchell looked like as he recovered from the Swine Flu...

As sick as he was, he is still adorable! Have a great Tuesday!

WHAT REALLY HAPPENED~

Now that I have been home for 7 days, I thought I should explain why I ended up in the hospital for 10 days. On Saturday, Sept 5th, I took Vinny shopping for a gymnastics leotard, out to lunch and then to the grocery store. I was pretty wiped out when we got home so I took a quick nap. By now, I know that I am usually only good for one outing a day and three is really pushing it. After a nice nap I finished part of Patrick's bathroom, took a nice hot shower then settled into my cozy chair for the evening. I noticed that my feet were more sore than usual which I attributed to my busy day.

Sunday, I woke up and as I got out of bed, I realized that not only did my legs hurt but they refused to work. Again, I just over did it so I sent the family off to church and went back to bed. When I woke up, the pain was getting worse and I still could not walk very well. I decided to get in the pool and see if that brought some relief. Since I was home alone, I basically had to crawl to the pool. Once I got in,and still could not walk,  I realized that I was not suffering from a day of over doing it. I was having an exacerbation of my MS. An exacerbation is also known as a relapse, attack or flare up. It is when an old symptom gets worse or there is an onset of a new symptom. One of the ugly sides to MS is that there are no warning signs of an exacerbation. I have not had one since February of 2008 and this is the first one that has landed me in the hospital. 

I went in and called the doctor on call who suggested we go to the ER. We did not have long to wait and after an exam, he admitted me. So, for 8 days I received Salu-Medrol which is a steroid through an iv every 4 hours. Then they put me on Prednisone which I am being slowly weaned off of. I had physical therapy in the hospital and now have it twice a week at home. I have a great therapist who has taught me how to use my core muscles for walking instead of my leg muscles which are still not where they were before my relapse. When I left the hospital I was using a walker and now I am only using my cane if I leave the house.

I cannot begin to tell you how much your emails of thoughts and prayers have meant to me. I hope to reply to all of you but if I don't please accept this post as my thanks. I am looking forward to showing you Patrick's bathroom tomorrow so stop by for some purple goodness.

DAY 4!

Would you believe that on Saturday I took Vinny and a friend shopping then to lunch. I came home and finished painting the wall art in Patrick's bathroom. I sat down and about 10 minutes later I noticed that my feet were starting to hurt more than usual. I just thought I had over done it. I went to bed and when I woke up on Sunday, the pain was intense and I could barely walk. I went back to bed, then crawled to the pool to see if I could walk in the pool. I could not. So, I knew I was having an relapse of my MS. I called the doctor on call and he told us to get to the er. We waited for about an hour then we were seen and immediately admitted.

I am receiving Salumedral sp? (a steroid) every 6 hours which messes up my blood sugars which calls for insulin shots. They will not let me go home until I can walk with only my cane and my blood sugars are back to normal. We are shooting for Thursday! I want to thank you for your thoughts and prayers. Mitchell and Charlie came by tonight and we took a couple of photos. I cannot believe I am actually going to post these here. I had just taken a shower so at least I am clean.

STILL IN THE JOINT

Thought I would post a quick update to let you know I am still being held hostage in the hospital. Actually, I am being treated like a queen so it is hard to complain. I am here due to a BAD MS RELAPSE. My legs decided they did not want to work anymore. The are slowing improving. I promise to post more updates when I feel a little better. Thank you all for you thoughts and prayers.

MS SUCKS!

I hope you are all having a wonderful Labor Day. I am spending mine in the hospital due to a nasty relapse. I promise to post more later when I am not so drowsy. Here is a little funny ( long and well worth it)  for your day courtesy of my friend Helene...

I just want to thank all of you for your educational e-mails over the past year.   I am totally screwed up now and have little chance of recovery.  I no longer open a public bathroom door without using a paper towel or have them put lemon slices in my ice tea without worrying about the bacteria on the lemon peel. I can't use the remote in a hotel room because I don't know what the last person was doing while flipping through the adult movie channels.                             I can't sit down on the hotel bedspread because I can only imagine what has happened on it since it was last washed. I have trouble shaking hands with someone who has been driving because the number one pastime while driving alone is picking ones nose (although cell phone usage may be taking the number one spot).                 Eating a little snack sends me on a guilt trip because I can only imagine how many gallons of trans fats I have consumed over the years. I can't touch any woman's purse for fear she has placed it on the floor of a public bathroom. I MUST SEND MY SPECIAL THANKS to whoever sent me the one about poop in the glue on envelopes because I now have to use a wet sponge with every envelope that needs sealing.    ALSO, now I have to scrub the top of every can I open for the same reason. I no longer have any money, but that will change once I receive the $15,000 that Bill Gates/Microsoft and AOL are sending me for participating in their special e-mail program. I no longer worry about my soul because I have 363,214 angels looking out for me, and St. Theresa's Novena has granted my every wish. I no longer use cancer-causing deodorants even though I smell like a water buffalo on a hot day. THANKS TO YOU I have learned that my prayers only get answered if I forward an e-mail to seven of my friends and make a wish within five minutes. BECAUSE OF YOUR CONCERN, I no longer drink Coca Cola because it can remove toilet stains. I no longer can buy gasoline without taking someone along to watch the car so a serial killer won't crawl in my back seat when I'm pumping gas. I no longer drink Pepsi or Dr. Pepper since the people who make these products are atheists who refuse to put 'Under God' on their cans.  I no longer use Saran Wrap in the microwave because it causes cancer. AND THANKS FOR LETTING ME KNOW I can't boil a cup of water in the microwave anymore because it will blow up in my face... disfiguring me for life. I no longer check the coin return on pay phones because I could be pricked with a needle infected with AIDS. I no longer go to shopping malls because someone will drug me with a perfume sample and rob me. I no longer receive packages from UPS or Fed Ex since they are actually Al Qaeda in disguise. I no longer shop at Target since they are French and don't support our American troops or the Salvation Army. I no longer answer the phone because someone will ask me to dial a  number for which I will get a phone bill with calls to Jamaica , Uganda, Singapore, and Uzbekistan. I no longer buy expensive cookies from Neiman Marcus since I now have their recipe. THANKS TO YOU  I can't use anyone's toilet but mine because a big brown African spider is lurking under the seat to cause me instant death when it bites my butt. AND THANKS TO YOUR GREAT ADVICE  I can't ever pick up $5.00 dropped in the parking lot because it probably was placed there by a sex molester waiting underneath my car to grab my leg. I can no longer drive my car because I can't buy gas from certain gas companies! I can't do any gardening because I'm afraid I'll get bitten by the brown recluse and my hand will fall off. If you don't send this e-mail to at least 144,000 people in the next 70 minutes, a large dove with diarrhea will land on your head at 5:00 p.m tomorrow afternoon and the fleas from 12 camels will infest your back, causing you to grow a hairy hump.  I know this will occur because it actually happened to a friend of my next door neighbor's ex-mother-in-law's second husband's cousin's beautician . .. Oh, by the way...... A German scientist from Argentina, after a lengthy study, has discovered that people with insufficient brain activity read their e-mail with their hand on the mouse. Don't bother taking it off now, it's too late.

MY LIFE BEFORE DISABILITY~

Once upon a time, I had a career. For 20 years I sold College textbooks. I love my job and I was very good at it. Do I miss it? Sometimes I miss the intellectual component. When you spend your days talking with College Professors, you learn a little bit about a lot of subjects. I miss the income, I miss the people, I don't miss the travel or the long, long hours. I also do not miss the stress.

My favorite part of my job during my 7 years at Prentice Hall was being a Regional Trainer. I was lucky enough to work for the most amazing woman. Recently, this amazing woman, Ann, found me on Facebook. Last week she sent me a few photos from one of the many new rep training sessions I participated in. It is so fun to see these photos. I look so young, thin, and able bodied. Ann plans on sending me more photos soon and I will share them when I receive them.

 

I am the tall one holding the white envelope.

 

 

I like to talk with my hands.

 

I am in the front row, blue turtleneck leaning back.

 

The New Rep Training Group. Ann is the beautiful one second from the left.

Well, enough reminiscing. I must go watch soaps and eat some bon bons.

OUR 16 HOUR JOURNEY COMES TO AN END...

As we slowly pulled into New Orleans I noticed that Charlie's mood got a little somber. Charlie was born and raised in New Orleans and this was his first time back since Katrina. As we got closer we started to see some of the devastation still left behind after almost 5 years. We saw cars flipped over, huge piles of debris and numerous houses with boards covering their windows. Charlie recognized many of the neighborhoods that we went by. We looked for his old house which was right along the train tracks but did not find it. Here are a few photos from our entrance into the city...

 

Charlie looking out at the lake.

 

These pilings used to have fishing shacks and docks on them.

 

Patrick's reflection in the window.

 

You can see the front of our train in this photo. Below the curve of the train you can see some debris still left over from Katrina.

 

The Superdome with the Basketball arena in front on the right side of the photo.

 

This is Charlie's sister Anna. She drove from Texas with her daughter in the 'VET' to surprise the boys. All three kids took turns riding in the Vet. I even took a turn.

 

Patrick in the Vet! He took this photo with his phone. Sorry for the poor quality.

 

Patrick taking a photo of himself in the rear view mirror.

 

Our hotel.

As soon as we arrived and dropped our luggage off in our rooms, we headed for the French Quarter to have Coffee and Donuts. These are not your normal donuts, they are Beignets. They are similar to a scone and covered in powdered sugar. The kids were instantly in love.

 

Mitchell ate 3...

 

Vinny also ate 6...

 

And Patrick ate 8!

And here is the cutest things we found in New Orleans...

 

Meet Miss Vivian Adele. Is she not the cutest little thing? Not only is she adorable, she is also the happiest baby. She never cries or fusses, just smiles and giggles and sometimes looks serious as if she is trying to figure things out. She did not get any Beignets, instead she had some breast milk...

 

That is it for our first night in New Orleans. Check in tomorrow for what we did on our first full day in the city.

Some MS news; I had my Tsyabri on Friday with the iv of Benadryl and it worked again. Even though I am still quite tired I only had a slight headache which was pretty much gone by Sunday night. Yippee!!!

HOW TO SLEEP ON A TRAIN WHEN YOU ARE 6ft 3in.

Before I explain how to sleep on a train, I must tell you my good news/bad news. I had my yearly MRI a few weeks ago and today I learned the results. The good news is that for the second year in a row I have NO NEW LESIONS!!! I do have a few that have grown a little but not much. Tysabri is doing its job. The bad news is that I have 3-5 lesions on my spine. These are older lesions that we did not know about because my neck has never been scanned before. One of the goals of MS patients is to keep lesions away from your spine for obvious reasons. At least mine are old and they are few in number.

Okay, now let's talk about the train. Charlie decided it was time to go visit his niece and Grand niece in New Orleans. As it turns out, Charlie's youngest sister and her husband decided to move back after spending two miserable years in Denver. They lived in Gulf Port, MS and were wiped out by Katrina. Then, Charlie's other sister decided to visit along with her daughter and so it turned into a mini family reunion. Charlie's niece, Erin and her husband Danny thought that our visit would be a great time to baptize their adorable daughter Vivian.

Now, we did not take the train to save money. Yes, it would have been a couple of thousand dollars to fly but we could have made the 10 hour drive for a lot less than the train cost. Charlie just thought it would be fun to sit on a train for 16 hours each way. Amtrak advertises that you will see glorious parts of the country and ride in comfortable recliner seats. I will post later about the beautiful countryside but for now, let us talk about comfort. We were lucky that for the majority of the trip we each had two seats so we could spread out a little. Yes, the seats did recline a little and the leg room was triple that on a plane. Sleeping was still extremely uncomfortable, the train was hot, and the food and drinks cost more than the train tickets. During the trip the kids were great and did not complain. Patrick did say how tired he was and wished he could sleep. I reminded him that this is an adventure and he would always remember it. He replied that an adventure was 'BEING A MALE STRIPPER'. The train was not an adventure, just a miserable long and very bumpy ride.

 

Vinny attempting sleep.

 

Mitchell sleeping.

 

More Vinny.

 

More Mitchell. Now, you might be wondering where Patrick is. He finally fell asleep here...

 

During Dinner he finally fell asleep.

 

Then after a quick meal he was able to get a few more minutes of shut eye.

When we were not sleeping...

 

Mitchell read the comics and talked with some friends while Charlie played with his I Phone.

 

Patrick ate chips while texting...

 

and Vinny ate granola bars while texting her friends.

 

Vinny and Mitchell played some tic tac toe.

Here are a few of the stops the train made. I am sure we made more stops but I was probably asleep.

 

Tuscaloosa, Alabama

 

Meridian, Mississippi

 

Hattiesburg, Mississippi

 

Picayune, Mississippi

 

and Slidell, LA. We also stopped in Greenville, SC. Clemson, SC. Birmingham, MS, and Atlanta, GA. There might have been more but like I said, I was most likely asleep.

Thanks for stopping by. Check in tomorrow to see what we saw while on the train.

EPIC RELIEF

I might have mentioned last week that Friday, May 29th was my Tysabri day. I told my doctor that this was going to be my last treatment. For the past two years I have endured a debilitating headache that hangs around for 7 days. That means that I have spent 6 months out of the past two years laying down in pain. This is not how I want to spend my life. So, we agreed to one more treatment. We have tried so many different pre-treatments trying to stop the headache to no avail. This time, we tried an IV push of Benadryl. This is where they shoot the Benadryl into my IV prior to treatment.

The first effect was it knocked me out. I slept for the hour long treatment and then the hour of observation. I woke up to leave and my nurse asked me how I felt. All I felt was tired which is normal due to Tysabri as well as the Benedryl. She then asked me how my head felt. I then realized that instead of the horrible headache I usually leave with I had a little bit of a headache. I was afraid of jinxing this turn of events so I told her that I was not sure, I must just be too tired.

I went home and of course the first thing Charlie asked me was how did my head feel. I told him that I did not want to talk about it. Again, I was too afraid to jinx it. So, I went and laid down for a few hours. When I woke up I realized that I still only had a slight headache. Saturday, I took it easy still waiting to be hit with the pain I have grown accustomed to.

By Sunday I realized that I still did not have a headache. In fact, I felt really good. I was still a little tired but I was able to do some yard work and I even made dinner. On Monday when I went to Vinny's Honors/Graduation day I felt awesome! I have gone ahead and scheduled my next treatment for July. I had my yearly MRI on Monday and will see my doctor the day before my next treatment. Whether we continue treatment is still up in the air. We are still trying to figure out if the Tysabri is causing my abnormally high lab results.

I decided that since I thought Friday was going to be my last treatment I would take some photos to share with you...

 

This is the Infusion room. There are three chairs on each side. I try to get the blue chair in the corner.

 

This is one of my favorite people. She is not one of the MS nurses but we she works on the side of the office near our room and we have become very good friends.

 

Kim with Megan. Megan is the newest infusion nurse and just the sweetest thing in the world. The third nurse is James. I was unable to get a photo of him that day. He too is simply amazing.

 

This is my IV bag.

 

This is the IV in my hand.

 

And this is Ashley. Ashley was the first infusion nurse in the center and is the only certified MS nurse in South Carolina. She has treated me so well over the past two years. I just cannot begin to tell you how wonderful she is. I know that I never would have made it without her. 

I want to thank all of you for your prayers and good thoughts. I hope you all have a great Thursday!