Rooms With a View

WHAT DO YOU GET...

after 17 days of steroids?

Yes, that is my foot in the black boot. I have broken my foot. How you may be asking? Well, that is a good question. We do not know how. All we know is that after 17 days on steroids, it is not unheard of to have issues with bones.  So, now I get to wear this lovely boot for 4 weeks. 

Last night was also Patrick's first Choir Concert of the year. I did not get to go  due to the boot and Mitchell still being sick. Before he went he had some trouble with his tie so Charlie helped him out.

Can you tell what Patrick is holding? His phone. Yes, he is texting.

Still texting.

It turned out that he had his tie on upside down. Who would have thought that would make a difference.

Is he not the most handsome boy around? I think so. The concert was amazing! I will post a video tomorrow.

Happy Wednesday!

HOME SWEET HOME~

   

After 10 days in the hospital, I was finally released yesterday! It is so good to be home. I will update more tomorrow. Thank you for the prayers, thoughts and get well wishes.

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.

VIRUS

I hope my absence has not caused any of you to be concerned. I am fine, it is my new computer, the one I received on May 1st to replace my old one that died from a virus, is now sick with a virus. It happened when Charlie was out of town. I received an email from 'Microsoft' and like an idiot, I opened the attachment. Charlie is doing his best to repair it but it is not looking good. Please cross your fingers and say a little prayer. If he is unable to repair this one, it is my last unless I can come up with the money to buy myself one.

I will keep you posted.

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!

LIVER, PANCREAS, AND A LITTLE ART.

On Tuesday I received the good news that I do not have Hepatitis. So, what is causing my white blood count, liver panels and other labs to be abnormal? The answer to this question depends on who you ask. My family doctor believes it is due to my MS therapy Tysabri. My Neurologist does not think Tysabri is to blame. He thinks I do have a bit of Pancreatitis, possibly chronic.

I believe that it is a combination of all of the different drugs I am currently taking. I have decided to slowly go off of all of them. My Neurologist thinks it could take anywhere from 6 months to a year since I have to do one drug at a time and taper off slowly. I had also hoped to stop Tysabri but my doctor convinced me to do one more treatment which is scheduled for Friday. We will do my yearly MRI on Tuesday and he will talk with the Tysabri rep and we will go from there.

Okay, on to the art part of this post. Ever since I finished the kids bathroom I have felt like something was missing on the wall where the towels are hung. I just could not decide on what should go there. A couple of weeks ago while I was walking around Hobby Lobby I saw a lady holding up a poster that I knew was exactly what I was looking for. I found the perfect frame at Michael's that was even on sale. It is hung a little higher than I would like but I am still in love with it. The kids love it too!

 

Is this not the coolest poster. It is perfect for both of the kids. Vinny LOVES dolphins, and Mitchell LOVES sunglasses (actually, Vinny loves sunglasses too).

So, just when I thought I was finished with this bathroom, Vinny came home from school with a piece of art that she made to match the bathroom. It is meant to hang from the ceiling. So, Charlie put it up tonight in the only place we could find; over the toilet...

 

This is made from drinking straws with ribbon running through each of them. It looks so perfect in this room!

The next room that needed some art was the Master Bathroom. Here are a couple of shots of the wall before...

 

 

Again, I searched and searched for months for the perfect art. I finally decided to make my own art. I loved what I did in our master bedroom so I thought would try something similar. Here is the result...

 

I tried to channel my inner David Bromstad. After painting the canvas with Gesso I then painted it a cream color. I painted a few streaks of brown paint randomly across the canvas then sprayed it with a water bottle. If you ever watch COLOR SPLASH then you know that David does this with almost all of his artwork. Mine did not quite turn out like his but I still liked the effect. Then I painted some flowers using acrylic paint mixed with some gel medium which gave the flowers some texture. I sealed it with a good water proof sealer and up they went! I am really happy with them. I was worried that Charlie would not like the pink but so far he does not seem to care.

Alrighty then, I am going to attempt to go to bed at a reasonable hour tonight. Tomorrow is Mitchell's Honor Assembly and Vinny's 5th grade Graduation party. I hope you all have a groovy Thursday!

THE HOSPITAL AND MOTHER'S DAY

Last Tuesday I started to experience a new pain in my lower back. I have experienced back pain before; in fact I have it almost weekly. This pain did not go away with Advil or with a heating pad. On Wednesday, the pain spread to around my belly button  and then slowly to the lower right side of my belly. I stuck it out until Friday. I finally called my neurologist because I do not have a family doctor. He told me to come in at 4:00 that afternoon. After a little poking he was convinced it was my appendix so he had me admitted and called the surgeon on call. This surgeon happened to be the same guy who took care of Charlie's hernia. He ran some blood work which showed an increase in my white count, my lipase and amylase (which is indicative of Pancreatitis) and my liver enzymes where very elevated. Next we did a CT scan. Then he left telling me he would see me first thing in the morning.

By 3:00 I was so hungry and so thirsty after having vomited all night and other things I will not mention. I begged for some water and finally was able to eat. At this point I have also gone without two doses of my regular medicines that I take and I finally had a nervous breakdown. By 4:30 I left, simply ran away. I called my dear friend who picked me up after I had walked about a mile and she took me back to the hospital. I really do not know what I was thinking or if I was in my right mind. The doctor finally showed up around 6:00 and explained that my appendix was fine but due to the increase in my liver enzymes and the size of my liver he wanted to see if going without my medicines, food and water would help those labs. It would have been nice if he had explained that to us. Needless to say, I still wanted to go home. I HATE staying in the hospital and I had already been there for over 24 hours.

The next step is to figure out which medicine is causing the liver problems. I do not drink but maybe once a year so we know it is not alcohol. I have never done IV drugs so we can rule that out. We do know that all of the medications I am currently on can all cause some kind of liver damage. Tomorrow I will find a family doctor and start to figure it all out.

I slept until 2:00 on Sunday. Charlie had bought Krispy Kreams and the kids gave me my gift. Storm was a work and when he got home he brought me a card. Here are a few photos of my gift. I will share more tomorrow after I have some more rest.

 

This is a Willow Tree. I collect them. My new one is the Father & Daughter one in memory of my dad.

 

This is a photo of my collection.

 

from the other end.

 

I will end with a nice photo that Vinny took of my boys.

I hope you all had a blessed Mother's Day.

Check back tomorrow.

GOOD NEWS AND BAD NEWS

Let's start with the good news, shall we. Look what my sweet husband gave me for an early Mother's Day present....

 

 

Isn't she beautiful? He also gave me these on Tuesday...

 

He thought that this Sunday was Mother's Day.

Now for the bad news... I still have my Tysabri headache so I am signing off for today. I will be back on Monday with a real post. I hope you have a groovy weekend.

DANCING FIRE

On day second after a nice dinner we headed off to the recreation room for a little dancing. For those of you who know me well know that I LOVE to dance. Unfortunately my MS has made it so that my legs and lack of balance do not make for great dancing. The first thing the kids were going to learn was how to Square Dance. Each of the kids needed a partner in order to dance. One of my cabin girls ended up without a partner so I ended up stepping in. She was such a trooper. Since it would take me so long to get to her side of the room she came to me. She went slow when I needed to and we ended up having a blast. The Naturalists had us perform the Do Sa Do like different animals or like we were eating something, etc. It was pretty funny.

 

Here I am being a good girl listening to the instructions. I am also saying a little prayer that I do not fall down and totally embarrass myself.

 

Vinny listening to instructions.

 

I know this photo is very blurry; I did not take it. I had to include it because it is a great shot of Vinny looking so happy and having so much fun!

 

More concentration.

 

Do Sa Do

 

The Right Hand Star.

 

Left Hand Star

 

Swing Your Partner.

 

Do sa do like a fish

 

Do Sa Do like you are eating Pizza. Now it was time to shake things up again with the Cupid Shuffle. I don't know this one so I took the opportunity to take a rest.

Vinny on the other hand knows how to do the Cupid Shuffle. Then they played the Electric Slide which no one but a few teachers, the Naturalists, and Me knew how to do. So, out I went out again to help teach the kids how to do the Electric Slide. There was a time when I could do the Electric Shuffle like the best of them. Now I look more like I had been electrocuted more that I was dancing. It was fun though and my favorite part? Vinny was not embarrassed by her mother dancing. Sorry, no photos of this part. You will just have to take my word for it.

Next we went out to the Fire Pit to sing songs and do a little dancing. Warning, these photos are not the best. I have not figured out how to take photos in complete darkness with a fire as the only light source.

 

 

The kids are singing a song about frogs in this photo. Another song they sang was the WHOOPING BIRD SONG. I have a video of the kids singing it but you cannot see anything except the occasional shot of the fire. It can get a little loud at times so be prepared for a little screaming. Enjoy!

BARRIER ISLAND DAY 2 PART 2

Day 2 was a busy day at Barrier Island. After lunch the kids were taken to the beach to hang out with the teachers for about an hour and a half. This gave the chaperones a little break. We should have taken a nap; instead we sat around and chatted. We did find a vending machine that had Diet Coke. I had gone almost two days without a Diet Coke and was getting close to the shakes.

After having some fun with the teachers, our group went to the SKINKS class. If you do not know what a Skink is you are not alone. I did not know either. A Skink is type of lizard. We met in the Herpatarium. The Naturalists taught the kdis the difference between Reptiles and Amphibians. Then they brought out a King Snake.

This is one of the Naturalists holding the King Snake.

 

Vinny being handled the snake. She has no fear at all. Many of the tough, crazy boys would not hold the snake.

 

The snake tried to escape...

 

She got it under control.

 

Beleive it not, I even held this snake. I do not have a photo to prove it but you can ask Vinny.

The kids were also able to pet a baby alligator. I had stepped out of the room at this point. It was a very small room and I was getting a little claustrophobic.

We then went off to the LOST AND FOUND class. The kids learned how to use a compass and then went on a scavenger hunt. There were plaques on some of the trees that gave the kids the directions for how many steps to take and in what direction. It was actually very difficult. Some of the parents tried to help to no avail. Eventually they all found their treasure.

 

Learning how to use the compass.

 

Running toward their treasure. Vinny is in the white.

Would you believe me if I told you that this day was far from over? The fun has yet to end. I, on the other hand, am done for today. My head is telling me it is time to take a rest.

Thanks for stopping by. I will back on Monday!