Finally Off To Cleveland

Christmas has come and gone, and 2007 is literally right around the corner. On New Year's Day we head for Cleveland where we will stay in a hotel overnight so that we don't have to rush around on Tuesday morning to be at my appointment at the Cleveland Mellen Center. I have waited three months for this appointment. I have basically been hibernating since Christmas, going out only to take my daughter to the airport for her trip to London and Paris and to go to the She-Neuro on Thursday. I have been trying to avoid the terrible stomach flu that has been running rampant in our area.

The She-Neuro is really growing on me. She has a very calming effect, is a good listener and has a pretty good sense of humor, something you need to help you get through the bad MS days.

I have had a less than wonderful last four days, having had my MS weird head as well as the facial numbness that started during my IV steroid adventure. Finally, today when I woke up the headache was only a faint whisper, although I am still getting the tingling in my face. The numbness in my neck and face seems to be worse when I sit vertically, which is not a good thing when you are someone who sits at the computer and edits photos nearly every day. Lying or standing gives me some relief so I have to get up and down a lot when I am trying to work at the computer.

I knew I felt better today when I awoke and didn't mind getting up out of the bed. I am a morning person. I love morning. I look forward to getting up each and every day, and for me to sleep past 8:00 is a very rare thing. During the past four days I have had to absolutely make myself get up. AND THE CRYING...for goodness sake...I don't cry and when I am having one of these recurring episodes I cry at the drop of a hat. I still haven't become used to THAT! It is just weird.

I fear I am going to have a tough time of it with this lesion on my spine. Whenever anyone hears that you have one on your spine they give you that "Oh You Poor Thing" look. I try not to think about it, but especially since I now have to deal with this weird squishy head thing and facial numbness I am truly afraid that I am going to wake up one day and really be a mess. Fear is a horrible thing. Emotional junk really stirs up the MS so it becomes a vicious circle. The fear and worrying only cause it to act up more, but the acting up causes much fear and worry. So you see, it is not an easy thing being diagnosed with MS. I recently read somewhere that "You don't GET MS until you get MS." It is a very true statement.

Wish me luck at the Mellen Center.

The Eyes Don't Have It.

Sometimes, it is better to never have had something, than to have had it and then have it taken away. After receiving the IV Solumedrol my vision improved slightly for several days. I could actually read the guide on digital cable without squinting. But sigh, my vision has returned to its post MS quality. I know I have much to be thankful for, but it was such a disappointment to have my vision improve, only to have it return to its previous state. I guess if nothing else, it finally explains to me why my vision has declined so much over the last couple of years.

The Happy Tree

Two years ago, I bought a cheap 6 1/2 foot white Christmas tree from Walmart to use for a holiday photo shoot. I wanted to do something different from the typical red & green Christmas. Little did I know at the time how much joy I would receive for my $39.99.

For many years, I have decorated a Christmas tree in our kitchen. If I were truly going to get to enjoy a Christmas tree, it needed to be in the area where I spent most of my time. I spend the largest amount of my time in either the kitchen or the computer room which looks into the kitchen. So began the tradition of a Christmas tree in our kitchen. There have been live pines and small artificials, but always a tree in the kitchen.

Last year when I started to decorate our home for the holidays, I decided that I would put the crazy white tree in the kitchen. Why not? I already had it, so why not use it. I draped it with beautiful white twinkly lights, but something was still missing. I added a string of colorful satin 1 1/2 inch globe lights. Ahhh, now I was on to something. The brightly colored lights gave a colorful glow to the white Christmas tree. The cord to the globe lights is forest green, but that didn't stop me. That dark green cord just adds to the crazy charm of the tree.

I filled it with brightly colored glass ornaments, both new and vintage. It sports a frog in a pink hula skirt/tutu and a pink glass flamingo. It shines with glittering snowballs and shimmering icicles and snowflakes. With each ornament I would hang on the tree, a new smile would spread across my face. As Christmas drew near, it soon became clear to me that my crazy tree still made me smile every single time I walked into my kitchen. It quickly became known as my "happy tree". My daughter told me that it looked like it belonged in a Dr. Seuss book. It has the same appeal as plastic pink flamingos on a lawn. Tacky? Why, yes...but just try not to smile at it!

This year has been a challenge for me. The discovery of the disease that has forever changed my life has not been an easy thing to face. As the holidays approached, I had to make some choices. The flurry of cooking and decorating has been tempered by other circumstances. Priorities, you know? Last week I had a three day dose of IV steroids followed by a week of near hell dealing with the harsh side effects. With each day that passes, I hope that this will be the day that I feel better. My head, my brain, has been a real challenge this past week, feeling squishy and heavy and swollen, as if it just could not fit inside my skull. Being vertical aggravates the already miserable feeling as well as causes numbness in my neck, face, lips and up to the bridge of my nose. This numbness and swollen feeling also affects my hearing.

On Wednesday, I could tell that I felt a tiny bit better and with each day since there has been slight improvement. Even as I type this blog, my brain feels like it is being squeezed, like something in there is trying to make room and there just is none to be had.

With Christmas fast approaching, I just couldn't stand not yet having a Christmas tree. So on Thursday and Friday I worked diligently at assembling and decorating my happy tree. It took me all day Thursday to get it assembled and another entire day to get it decorated. I tried to look at it in the way that the wonderful Flylady has taught me to meet other challenges in my life, one piece, one step, one bite at a time. I would hang a branch and lie down for a while and then I would hang another branch until finally, I had a whole tree. It may have taken 2 1/2 days, but my happy tree now stands cheerfully in my kitchen.

I have decided that this year I will take the "Happy Tree" to a new level. With the new challenges that I am facing in my life, I sometimes need to be reminded of all the many things that bring me joy. With every day that the Happy Tree stands in my kitchen, I will write down on a small tag, one thing that brings me joy. I will hang each and every tag on my Happy Tree as a constant reminder that in spite of the struggles, there is much in my life to be joyful about.

May you all find a Happy Tree in your lives this holiday season.

UPDATE

It has been a very rough week for me. I had a reaction to the steroids. Today is the first day I have been able to be up and move about since last Saturday. I have spent most of the last 6 days lying on my side. (For those of you who actually know me, you know that couldn't have been very easy.) I am feeling a bit better each day. I saw the She-Neuro yesterday. I am more certain than ever that I made the correct choice of doctor. More details later.

Quick Note...

Today I had to take a step down in the magnification of my cheater glasses. I have been too cheap to buy real glasses, knowing how abusive I am to them, it felt like a waste of money when I could go to Sam's Club and buy four pair for about $19.00. Today I noticed that the ones I had been using as of late were making my computer monitor blurry so I stepped down to an older pair of lesser magnification and VOILA, I can see perfectly with them again. Can I get a WOO HOO!!!!

IV Solumedrol: Day Three

The third one was not the charm. I had a pretty nasty headache throughout most of the evening, falling asleep right after I ate dinner and almost sleeping through pushing the go button to record Grey's Anatomy for my daughter. We have a DVD recorder and you can't watch one channel while recording another and I always use the flexible record mode so that each program is in the highest viewable quality possible. Hubby thought I had it set up to the point of just pushing a button, but I needed to set up the flexible recording time still and shot up out of a dead sleep at 8:59 and almost didn't get it started in time. Britt doesn't have cable in her apartment, one less added expense for a college student who isn't home much anyway, so I record G A for her each week. Just a small token of my love for her.

Yesterday my jaws hurt terribly all day. I don't know if it had so much to do with the steroids as maybe with my gum chewing to camouflage the taste in my mouth from the steroids. I will try and stay away from the gum today. I have Life Savers and Altoids that I can stick with today if the taste is still there.

Three days of steroids took three days of starting new IV sites. Each day the nurses would look at my arm and think mmm, good veins (which by the way is because I am transparent and not because they are really such good veins). Then they would stick the needle in only to find they had to chase my vein down once they got in there. Each nurse would almost tisk-tisk the nurse the day before when I would tell them that she had trouble once she had the needle in me, then they would realize that it was happening to them too. The third nurse decided that I may have spastic veins that literally run from the needle or something like that. She finally decided she was in, even though she was getting no blood return and sure enough as soon as she went ahead and hooked up the IV it started to flow just fine.

Today I start the oral steroid taper. It will last for 12 days. Wish me luck. Oral steroids gave me tremors in 2000. My new she-Neuro put me on a different type. I was on Prednisone in 2000. This time I am on Dexamethasone.

Since the head isn't pounding too hard this morning I need to try and get some editing done. I'll check back in later and let you know how the oral steroids are treating me, no pun intended.