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.

IV Solumedrol: Day Two

Another good day. I feel very fortunate. I had another wonderful nurse and we were able to speed the drip up a bit today. I slept for three hours after the nurse left which is so not the effect I would have predicted that steroids would have on me. I thought for sure I would be crazy-bouncing off the walls like a howler monkey but instead, they are just knocking me on my butt. Go figure!

My body must have become somewhat accustomed to the steroids. I finished in a little under 2 1/2 hours with no terrible head weirdness today. I am unsure of what physical help it may have given me so far since I have come pretty far without the steroids. I was still a little off balance today. I was hoping for that to go away, and the Lhermitte's Sign (the weird feeling down my right side when I lean my head forward still seems to be there, although maybe not as severe. I can still see a little better, which is worth getting the steroids even if none of the other problems get any help from them. I still have the bad taste in my mouth and still have a headache , although neither is as severe as yesterday.

The IV from yesterday had blocked itself off so they had to start one in a new spot today, so rather than have that thing in my arm again tonight I just told her to take it out and start a new one again tomorrow. Needles don't really bother me, so I'd rather not have to deal with it and be able to sleep without feeling like my arm is bound tonight. That was my biggest challenge trying to sleep last night, having a tube sock on my arm. Welcome to claustrophobia land.

One more day to go.

So last night...

So last night I was lying in the bed watching Will & Grace. I love to end my day with that bit of humor, so several nights a week I watch Will & Grace repeats before I go to sleep. Who can have a bad nights sleep after watching their crazy antics? When the show was over and the credits were rolling I suddenly realized that I could read most of it. It wasn't entirely clear but I could certainly see them better than I have seen them in more than a year!!! Of course, then I had to channel surf and read the digital cable guide to see if it was just a fluke. I could actually see the names of the channels and the programs that were listed. Again, not perfectly clear, but I could read them without squinting and leaning forward. Did you know that the small word "the" is inside the C of the CW network's logo? I leaned over and poked my husband to wake him up to tell him that I could read the credits. LOL, the man sleeps like a dead person. He barely remembered it this morning.

I eventually had to get up to go to the bathroom and everything in the bathroom was more clear to me, the tile, the floor , the rugs. The hall oriental rug design was vivid. It was as if I had been looking at things through a dirty window and someone washed it! Woo hoo!!!

At midnight I came downstairs and called my nocturnal sister who I knew would likely still be awake to tell her that I could see better. I knew she would be happy for me. I just had to tell someone. Someone who was alive and would actually be able to respond.

This morning I still have a headache, but the bad taste has gone for now. The vision improvement isn't as good as it was at midnight last night but maybe after the next two treatments it will stick. All I can say is "bring on the steroids"!

IV Solumedrol: Day One

So far so good...It took about three hours for my IV drip instead of the one hour that it is supposed to take. Each time she would speed up the drip my head would start to feel really funny and sort of like the top wanted to blow off. I've had a tiny bit of racing heart and tightness in my chest but barely enough to mention. I do have a headache, but even it isn't unbearable. Ibuprofen didn't really seem to help it at all. The weird taste in my mouth was easily masked with Ice Breakers gum. I chewed it the entire time I was being given the drip and I only had to get a new piece once and that was because I thought I would switch it up and have a mint. The mint didn't work as well as the gum. That Ice Breakers has some long lasting flavor!!! Water is unbearable. The taste of it is so warped by the Solumedrol that it is nearly impossible to drink, but I am trying.

I tend to be "opposite girl" when it comes to medications and so instead of hyping me up, I was asleep within an hour of the time the nurse left. I guess I won't be refinishing my floors, painting my walls and decorating the house for Christmas during these three days.

The nurse from Option Care was wonderful. I am very pleased with them so far.

Time to go back to the couch. My head still feels a little "woo woo".
Wish for me that tomorrow's treatment goes as well as today.

Conflicting Emotions

Today I am both sad and mad, as well as scared. In 1 1/2 hours I begin my IV Solumedrol treatment for the first time. The fear of the unknown is just not very much fun. There will be side effects for sure, but once again it is like playing Russian Roulette. You don't know which ones you are going to get until they happen. I will likely swell up, just what I need. Already I have no idea who this woman is who looks back at me from my mirror and after the steroids, she sure will be unfamiliar.

I wish they were administering it somewhere besides my home. I wish I had told them I would just come to their facility. My home is my haven, my safe place and now there will be this memory in my house. It sucks!

The First Treatment

Well, we made it through Turkey-day without a hitch. I was a little tired the day after Thanksgiving, so I just sat and edited photos all day to catch up on my energy. It was great to have both kids home for the holiday, although I use the word "kids" loosely since they are actually both adults. Today I will take Britt back to school and try to mentally prepare for tomorrow.

Tomorrow begins my first treatment of IV Solumedrol (steroids). My new Neuro feels that I have enough residual effects going on in my body from the enhanced lesions to justify at least a good effort at putting them into remission. I totally agree. It may not help, but then again, I may feel almost brand new after the side effects of the actual treatment are gone.

An in-home healthcare nurse will come to my house for the next three days to administer the IV medicine. They will put in an IV port and leave it there for three days. I hope they are able to put it in a location which least affects my mobility. When I was in the hospital, they put it on top of my right hand. That wasn't a great spot for a right-handed person. Of course, as my husband would say "What makes you think it is about you?" LOL, he is so right. It is not their job to consider my inconvenience. It is their job to get it done!

There is a huge list of possible side effects from the IV Solumedrol, hopefully most of them are temporary. I'm a little freaked out by the unknown aspect of the treatment. The needle thing is no big deal at all. I have no fear of needles, of blood work etc. My fear is of the medicine itself and the effects it will have on me.

I had to take oral steroids in 2000 for a horrendous case of poison ivy and they were no fun at all. They totally altered my personality and led to tremors in my legs that warranted them being discontinued. The Neuro says that sometimes IV steroids have a very different effect from oral steroids. I can expect my heart to race, sleeplessness, weird taste in my mouth, a lot of trips to the bathroom, drippy eyes and the list goes on and on. Maybe I will be lucky and the side effects will be minimal. A girl can dream can't she?

I am a high energy person, thus far, even with MS. For those of you who know me...can you even imagine ME on steroids? It should be interesting to say the least! As if I don't talk fast enough already...

Keep me in your thoughts over the next few days as I take a new road on this journey that I was forced to travel.

The Miracle Cure

I only have a few minutes today. I have to buy Thanksgiving groceries and continue cooking for the holiday. Quite frankly, this year I am just thankful that I am able to cook at all.

I just had to tell you about the miracle drug that my new neuro gave me. In my previous post I told you that she had given me a shot of Depomedrol/B12. Well I'll be "dad-blasted" (that's southern for damn. ;) if it didn't relieve the right arm pain that I have had since July. I pulled a muscle or something in my right arm when my niece and her family were visiting in July and it has hurt every day since, some days worse than others and having to use a mouse so much to edit photos certainly wasn't conducive to it healing. Well, "bring on the hypodermics" is all I can say! My arm often hurt so bad that I couldn't stand to lift a coffee cup. Woo hoo! It doesn't even hurt when I have it all tangled up with my pillow at night.

Time to get busy. The grocery stores are waiting.

Just in case I don't get to blog again until after the holiday, Have a Happy Thanksgiving!

Turn out the lights, the party's over...

I have never had a female doctor until now. My children had female pediatricians. However, until now I have never had a female doctor. It is not that I don't think they are capable; the situation has just never presented itself before now. When I moved to Ohio in 1982, I used the family doctor that my husband's family used. He helped me get past an awful addiction to Afrin nose spray (Stay away from that crap! It shouldn't be sold over the counter!!!) and from that day forward he has been my hero. He is still our family doctor and I dread the day when he will begin to think about retirement. I trust him beyond question. When my male gynecologist retired, I stayed with his replacement. My dentist is male, my previous neuro was male, even the doctor who operated on my toe was male. So this having a female doctor, it is a little foreign to me. Again, so no one bashes me about the female doctor thing, it isn't that I have refused a female doctor, the situation has just never presented itself. I have had the same gyne (the replacement) for about 18 years. I have had the same family doctor for 24 years. I had the same dentist for about 22 years, until he retired a couple of years ago and then I just used his replacement. So this is not a case of discrimination.

Women are generally not my biggest fans. I realize that is a broad statement. Sometimes the truth hurts. OK, it doesn't really hurt. I just really don't care, which is probably why they don't like me in the first place. Women dress to please other women. Women think they are putting on makeup to show off for men, but they aren't. God forbid, you should run into a woman you know when you have no makeup on. You will be scarred for life.

As I was discussing the new, yet unseen female doctor with my sister yesterday, I was voicing my inner weirdness over her being female and me never having a female doctor before and the fact that women don't really like me. Of course, she is my sister, so she likes me and probably can't understand why other women don't like me. She didn't necessarily agree with my assessment of my likability factor when it comes to other women until I reminded her that the women in our family come with a built in "flirtability". (I don't think it is just the women. I have seen many a woman swoon over my four brothers as well.) [Spell-check keeps trying to tell me that flirtability is not a word. Get over it!] I am overweight, have some "big ol' teeth" and I have let my natural gray hair reign supreme, but I can still get my flirt on if I need to. It is a gift. A gift that isn't really going to work very well on a straight female doctor. I guess I will have to map a new route!

Just so we are clear...I don't intentionally flirt. It just is. It is absolutely harmless, I love my husband with all my heart. Maybe it isn't so much flirting as turning on the charm. Although I can't for the life of me figure out how those two things are different. Whichever, it has served me well over the years and I am not about to disown it now. I own it, and I hope that I live to be 86 and still own it.

Back to the female Neuro...after all, this was supposed to be about her. I guess not only am I a flirt, but self-absorbed as well.

It was a little weird at first. She was very nice and had a wonderfully calming presence about her, which is in direct contrast to my previous neuro who was in a constant state of confusion. I don't really want to bash him. On a personal level, he was a nice guy. However, as a neuro for such an important disease, he was just a little too scatterbrained for me.

The new Ms. Neuro spent a lot of time with me. I was impressed with that and the fact that she suggested some treatments etc. that I had openly wondered why the other neuro had not suggested the same things. (No matter how I try to fix that sentence, it just won't fix so take from it what you can. That is all I am saying.)

She gave me a shot of Depomedrol/B-12 and as soon as Thanksgiving is over, I will get a course of IV Solumedrol (steroids) in hopes of turning the light off on this lesion that is still hanging on and causing very aggravating, although not unbearable aftershocks. This thing in my right leg, I am finally able to describe what it feels like. When the heat washes down my leg, it actually feels like someone is pouring a bucket of warm water down my leg. Last night it had moved up as high as my ribcage, which is how high the numbness went when the onset of this devil started in September. If nothing else, this tells me that it is likely just the same old long-partying lesion that is causing this somewhat new sensation. Will somebody please turn off the lights and tell him it is time to go home.

Can I get a big WOOT WOOT? I have an appointment with my new neurologist tomorrow morning. I called today to make an appointment. They couldn't give me an actual appointment until January, but told me that the first available cancellation they had was mine. Luckily they called this afternoon to tell me they have a cancellation for tomorrow morning at 10:00. I don't usually get this excited over going to the doctor but getting in to a doctor right away is truly a blessing. I was unable to get into the Mellen Center at Cleveland Clinic until Jan 2. Even while seeing a specialist at the Mellen Center I will still need to have a doctor closer to home for emergencies. I know a few people who go to her and they speak very highly of her so hopefully she will be able to get me started on something to try and prevent this thing from getting worse.

As fate would have it, I have been feeling very well for several weeks. However, this afternoon I have been having these weird heat flushes through my right leg as well as other little twinges here and there so the timing is perfect!

I'll update tomorrow afternoon. Wish me luck!

Update

Things are still going well. I have been feeling pretty good for almost two weeks now. I did a senior photo shoot yesterday and had very few problems. I was even able to get up on my short person stool with no problem. I didn't exactly leap onto it in a single bound as I used to, but it wasn't quite the challenge that it was a few weeks ago. Hopefully we can keep the symptoms away for a long long time.

I will not likely be blogging over the next week. My sisters are coming to visit from Georgia. Yippee!!!

You can read more about their visit HERE.

Update

I just wanted to give everyone a little update. Nothing clever, I don't have time for clever right now. I have been locked up in a dark room editing senior pictures for the last week so I am far behind on my every day tasks. My two sisters are coming from Georgia to Ohio for a visit next week and I have to get caught up so that I can enjoy their visit.

Last week was a very good week for me physically. No real pain, no real numbness or any other weird thing that MS does to you. The walk is still not perfect but definitely getting better. I had two doctors appointments. One with my hematologist ( he set me free) and one with my family doctor. My family doctor made an appointment for me at Cleveland Clinic. I can't get in until Jan. 2. If I don't get in to see them until then, it will be four months since my attack. It takes six months for any MS medicine to really start to take affect, which means it will be ten months from the time I had my first diagnosed attack until medication starts to help me. That doesn't even take into consideration that in hindsight I suspect I have had MS for well over a year. I don't know if I am willing to wait that long. Having MS is like playing Russian Roulette. You never know when or where a lesion will happen and if it is in a relevant spot it could cause you to be unable to walk or talk or breathe or eat. Do I want to gamble like that? I feel like a walking time bomb! We have a local MS specialist and I am toying with the idea of trying to see if I can get in at her office sooner than Jan 2. These people are messing with my life here!

So far this week I have had a little pain but nothing unbearable. The electrical shocks kept me up all night two nights ago, this time in my legs. Yesterday I had them in my right hand. I stayed up until 3:00 Saturday morning editing pictures for a girl, so Saturday wasn't my best day, but overall it has been a pretty good past 10 days. I have too much work to do to sit here. I will check in again soon.

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Disposable Children

(This isn't going to be pretty, so some of you may not want to read this.)

What is wrong with people? How can they possibly think that their children are disposable? I am not going to mention names to protect the innocent, but I am really pissed off. When you have a child, you make a commitment. You had a choice, have it or not have it! If you chose to have it, then you need to freakin' step up and be a parent. Children are not disposable. You don't get to get rid of one just because it is broken. Odds are, if its broken its because YOU broke it, so by God, you need to step up and fix it. You don't get to ship them off to someone else in their teen years just because it gets more difficult. Weren't you a miserable mouthy teenager once too? You don't get to shuffle them around from person to person like they are of no importance. You don't get to bail on this responsibility. They should lock people up for this! There should be consequences. You don't get to throw a high school student out of your home just because they turned 18. What are they supposed to do? They are not freakin' DISPOSABLE!!!

They are yours. They are your responsibility. They are learning what you teach. If you teach them of how little importance they are, they are going to feel worthless. If you teach them to bail on adult responsibilities, they are going shirk their own adult responsibilities. What kind of example are you setting and do you even care? Apparently not. I can't even imagine what it must be like to feel like no one wants you. One parent/guardian puts you off on someone else because they can't handle being a parent. Then the next parent/guardian throws you out and then you have to go back to where you weren't wanted in the first place. What kind of life is that for a child? What kind of life is this child going to have? How much self-worth is he or she ever going to feel? What is WRONG with people? You had a choice to have sex or not have sex. You had a choice to have the child or not have the child. If you are going to bring a child into this world you better make damn sure you are ready to step up and be a parent. YOU DON"T GET TO JUST GET RID OF A CHILD BECAUSE YOU DON"T FEEL LIKE PARENTING!

CHILDREN ARE NOT DISPOSABLE!!!

A Better Day

Today was a better day. I didn't have to have any torture today. I still had a bit of a headache but felt fairly well for most of the day. This afternoon I have been struggling with balance but over all it wasn't a bad day. I was able to get some photo editing done today. It has been hard for me to edit lately because of my eyes. I started having trouble focusing later this afternoon and that was my sign that it was time to walk away from the computer. This is one of the things I was working on.

Getting Through Today

I am trying to deal with my MS one day at a time. It isn't always easy. Today is the second bad day I have had in a row. My legs didn't want to do their work yesterday and I was in a cranky mood most of the day.

I slept very well last night, the best I have slept in quite a few days, but I woke up feeling sluggish and heavy-headed. I have a headache and my eyes are pulling. My left eye seems to want to be more blurry than usual. I feel a bit dizzy and my facial numbness is back today. I just want to go and curl up somewhere and watch a movie or take a nap. I can't. I have to go to the hospital this afternoon to have a mammogram. Yippee. I am just going to say it...Titty Torture! I can guarantee you that if a man had to throw his penis on a table and have it whacked with a hardback book to screen it for cancer, scientists would have already figured out a kinder gentler way to do that test!

I am so not in the mood for this today!

Have it Your Way!

(Jenny & Missi, you thought I was kidding didn't you?)

Yesterday my pseudo-daughter (my pseudo-grandchildren had to come from somewhere) and her good friend, who has now also become my friend, came for a visit. We had already decided to go to good old "Have it Your Way" Burger King because we had two little guys with us. Did you ever try to have a conversation with two bored small boys sitting at your lunch table? If so, we don't even need to explain why we chose Burger King and their play area as a place to have lunch.

As I have mentioned before, MS is a surprise each and every day. Yesterday was a difficult leg movement day and I'm not sure whether the fact that my legs were lazy made me annoyed or if I just started out annoyed and the legs were just a bonus. Regardless of where it started, yesterday probably wasn't the day for Burger King to mess with me.

How long has "Have it Your Way" been their slogan, catch phrase, jingle etc? Well I decided to have it my way yesterday and they wouldn't let me. They have a new Mushroom Swiss Burger on their menu. I am not a huge beef fan but will manage to eat a BK cheeseburger occasionally since the quantity of actual meat is very limited. I usually order a kid's meal if I eat at any of the fast food places. I figure, minimal amount of damage if I eat small. All I wanted to do was order a kid's meal with a cheeseburger and have them switch the American cheese to Swiss cheese and throw on some mushrooms. This should have been no problem for the "have it your way" Kings. WRONG!!! They refused to do it! Arby's will add Swiss cheese to a kids junior roast beef and never flinch. I almost always ask for something slightly different when ordering at one of these places and it never trips anyone up. BK couldn't let me order what I wanted to have because the COMPUTER wouldn't let them. It should have been a no-brainer. The woman behind the counter said if they did it there would be an additional charge for the cheese and mushrooms. Do I look like I care if I have to pay an extra dollar? As it turned out, it would have been Missi's extra dollar but I really don't think she would have cared either. Instead of letting me have it my way, which I really don't understand at all since it is all they FREAKIN' say in any commercial they do, they just made me mad and lost a customer. I'd rather have a McDonald's apple pie anyway!

Here's the phone number for our Burger King. Call them and tell them what a joke their slogan is since a person can't even get Swiss cheese and mushrooms added to a regular hamburger!
(330) 545-3127 Do it, I dare you!

Landslide

I have always loved the song "Landslide" by Fleetwood Mac. I even liked the version done by the Dixie Chicks, although it wasn't the same as hearing Stevie Nicks sing it. Last weekend when we were at a wedding reception the DJ played the Fleetwood Mac version. As I was making my way around the dance floor in the arms of my husband, my lover, my best friend, the words to that song smacked me right in the face.

I am a singer. There is not a day that goes by that I don't sing. I may make up a crazy song to sing to the cat or sing along with the collection of music I have on my computer, but I can guarantee you that not a day goes by that I don't sing. I also sing to my husband as we are slow dancing. I always have. As we were gliding around the dance floor (OK, maybe not really gliding since the MS came to visit, but I still want to believe we were gliding, so let me have my way) I was singing the words to Landslide along with Stevie.
When it got to the verse
"Oh, mirror in the sky
What is love
Can the child within my heart rise above
Can I sail through the changing ocean tides
Can I handle the seasons of my life,
Hmm Hmm, I don't know
Hmm, Hmm"
I sort of changed the words a little bit. Instead of "I don't know", I emphatically sang HELL NO!!!! My hubby laughed out loud at my declaration.

I have loved this man for more years of my life than I have lived without him. I met him at age 23 and we have been a couple now for 26 years. If at age 23 you had asked me if I could possibly love him more than I loved him at that given moment, I would have told you that it wasn't possible. I loved him so deeply there was no way I could love him more. If you asked me now, at age 49 if I could possibly love him more, I would tell you yes. That tomorrow I will love him more than I do today, because with each and every day that we share, with each and every moment that I love him, I know that tomorrow I will love him even more. He is my compass. He is my life. For him, I will always find my way home. I have built my life around him.

Landslide (as sung by Fleetwood Mac)

I took my love, and I took it down
I climbed a mountain and I turned around
And I saw my reflection in the snow covered hills
Till the landslide brought me down

Oh, mirror in the sky
What is love
Can the child within my heart rise above
Can I sail through the changing ocean tides
Can I handle the seasons of my life,
Hmm Hmm, I don't know
Hmm, Hmm

Well, Ive been afraid of changing
Cause I've built my life around you
But time makes you bolder
Children get older and
I'm getting older too, so...

I've been afraid of changing
Cause I , I built my life around you
But time makes you bolder
Children get older and
I'm getting older too,
I'm getting older too

So, take this love, take it down
Oh, If you climb a mountain and you turn around
If you see my reflection in the snow covered hills
Well the landslide'll bring it down, down

And if you see my reflection in the snow covered hills
Well maybe, the landslide'll bring it down,
The landslide'll bring it down

Red, White & Blue

When you are already reeling from a recent MS discovery, driving up to a building with a big sign out front that reads The Blood & Cancer Center is probably not going to make you happy. I knew I was going to see a hematologist. I did not know that his office would be in the Blood & Cancer Center. That sign might as well have been a giant flashing neon sign. The impact it had on my mental state when I saw it was overwhelming. My heart started to beat faster and I swear, I could barely breath. My legs were weak...Oh yeah, sorry...They were weak before I got there. (MS joke)

When you are going to see a hematologist you assume that you will be keeping your clothes on and that they will be drawing blood. Wrong! The first thing they did was tell me to take off my clothes from the waist up. Excuse me...what do my bare breasts have to do with my blood? Chalk up another one for humiliation.

As I sat there on the examining table in my beautiful open-front hospital gown, tears began to stream down my face. I wasn't prepared for this at all. Not for the BLOOD & CANCER CENTER and not for being bare-breasted anywhere but my bathroom, my bedroom and my gynecologist's office. I was emotionally prepared for needles, not nakedness! You have to work up to these things.

The doctor was very kind and full of the normal questions like "When was your last period?". He used my lymph nodes like a road map, even the ones in my groin area, which again, not prepared for. Next time give me directions, let me know what to expect. Seriously!!!

Eventually they did suck a few tubes of blood out of my arm and the results were good. My white blood count was back to normal. I guess I am not dying of cancer today. The Infectious Disease doctor who saw me while I was in the hospital, (because of my high white blood cell count) mentioned something about consistent elevated white blood cells being a precursor to Leukemia. Why put that in my head? I don't understand that about doctors. Just because you know it, doesn't mean you should always say it. I don't really want to know that I might get Leukemia, I only want to know if I have it!

The next stop, Cleveland Clinic. This time, I am asking what they are going to do to me before I get there. A woman needs to be prepared for these things. A lesson I should have learned when I showed up at the emergency room wearing red panties.

In Sickness and in Health...

My husband and I spent the weekend in Springfield, Ohio, a town about 3 1/2 hours SW of us, to attend the wedding of the son of one of my husband's dearest friends. It was a lovely town in spite of far too many one way streets for a town its size. Our hotel room overlooked a beautiful fountain that sparkled like trickling diamonds at night. Directly across the old brick roadway which surrounded the fountain was a huge building that was constructed in 1890, Springfield's market place and city hall. Made out of brick and sandstone, with a magnificent clock tower that struck on the hour, it was truly a delight to see. Railroad tracks ran along the back of our hotel, tracks that are still in use and the wailing of the train whistle as a train blew through town was charming by day, not quite so charming at 3:00 AM.

This was our first trip since I was diagnosed with MS. Overall it went well, with the exception of my meltdown at the reception and the sensible shoes that wouldn't stay on my feet.

When MS is already affecting your gait, you must choose your shoes wisely. I am still able to walk, and when barefoot or wearing flats I can fake a fairly steady walk for short spurts at a time. I chose my shoes for the wedding wisely, or so I thought. They were lovely "strappy" black shoes with a small heel that was wide enough for me to maintain my balance and a heel strap to hold my foot in place. All I can say about those shoes is "What moron designed them and did anyone try to walk in them before they decided to put them on the market?" The point where the heel strap attaches to the strap that goes across the top of your foot on the side that buckles, had nothing to anchor it. It was free-sliding so that when you first put it on, and get everything situated it feels fine. After about ten steps the heel strap starts to slide down the strap that goes across your foot and in a very short while the heel strap falls completely below the heel since there is nothing to hold it on place. It is hard to describe, but trust me when I say they were very poorly designed! I spent most of the night struggling with my shoes which isn't such a good thing when you are already struggling with your emotions.

Combine bad shoes, MS and walking, and there was indeed walking involved...much more than there had to be...Cari clears throat and shakes her head at the poor navigational skills of some certain people who will remain nameless...and you get the evening started off on the wrong foot. (Pun fully intended!) I was exhausted before we ever got into the reception hall. We were assigned tables and I intentionally chose a seat which faced away from the dance floor, hoping that if I couldn't see it, it wouldn't make me sad.

I held up fairly well through the first part of the reception, although I'm sure I wasn't my normal sassy self. The only walking involved was the buffet line, which to my delight had accommodated those of us who aren't meat-eaters by having vegetarian lasagna on hand. Big points scored for the bride and groom! After the traditional bridal dances were complete the DJ decided to crank it up with The Commodores, Brick House. For me, that was like having a ton of bricks fall down on my head. The realization that I would never be able to "Shake 'my' Groove Thang" on a dance floor again was just more than I could take. I seriously couldn't hold back the tears. To some of you, this may seem trivial. For me, it was like a bomb going off. I swear I could hear ringing in my ears! The tears started to flow and I couldn't get out of there fast enough. My wonderful husband helped me make my way out into a hallway where I actually sobbed over the loss of my "Groove Thang". I felt like a part of me had been ripped up into tiny pieces and carried away by the wind. My Electric Slide has left the building!

There were a few people at the wedding who know what my husband and I are dealing with, but for the most part, the people who saw my hubby and me in the hallway probably just thought we were fighting. This MS has taught me a thing or two. 1. People who are wobbling aren't always drunk! 2. We don't ever know what someone else is dealing with in their lives so we shouldn't be so quick to judge their behaviour. What looked like a lover's quarrel, or me just being a big baby or even a witch was actually me mourning the loss of a part of me.

During the actual wedding ceremony, as the new bride and groom were repeating their vows it once again hit me how very much my husband loves me. He has really had to step it up this last month and has done so with barely a stumble. Those words... for better or worse, in sickness and in health... are not to be taken lightly. In the 24 years we have been together we have had better and we have had worse. We have had sickness and we have had health. Most of all, in spite of success and failure, in spite of mistakes and accomplishments, we have had love. Big love, once in a lifetime love. Love that completes each other's sentences. Love that tries to shelter the other from pain. Love that after 24 years, still makes my heart skip a beat.

Corn Pops Therapy

Last night I couldn't sleep, again. My brain never seems to be quiet, even when I beg it to shut up! I swear, even when I am not thinking about something specific, there is still a soundtrack playing in my head. As I sit here typing this blog I am required to think, to form sentences and to type them. Even while that necessary thought process is going on, there is still a song playing in my head. It is seriously as if I come with my own built in soundtrack for life. Today's song is "Leave the Pieces" by The Wreckers. At least the song finally changed. For three days, the song "Tim McGraw" by Taylor Swift has been playing in my head.

This internal soundtrack has nothing to do with MS and everything to do with my sleeplessness. I envy people who can easliy turn their brains off to go to sleep. Mine will not shut off. Even when life is at its best, I still struggle with slowing my thoughts down enough to fall asleep. You pile all this MS junk on top of all the stuff that already frolics in my mind, and well, there's your problem.

After being in bed for an hour last night and realizing that sleep was not going to come, I made my way downstairs to my computer room. There is something comforting about the familiar glare of the monitor. I find solace in the process of editing photographs. It keeps my mind from focusing on all the fear and anxiety that this disease has added to my life. It is a fear and anxiety that I am trying hard not to spread to my children. Even though they are adults, I am and always will be, first and foremost, their mom.

My son spends precious little time sleeping. (At least at night.) He works days and probably sleeps only four or five hours a night during the week. He catches up on the weekends. During this past week I have been very thankful for his sleeping patterns. Last weekend we had what we jokingly refer to as our "pajama party". I got out of the bed at 3:30 and kidnapped him from his room and the two of us sat on the living room floor and chatted until almost 6:30 at which time we each ate a bowl of Corn Pops before heading off to bed. My illness scares him. He thinks me invincible and the thought of anything less is hard for him to deal with. He also spoke some wonderful words of wisdom for one so young. He told me that everything is difficult for me right now because it is all new. He says I will adjust to my new limitations and eventually learn to compensate for them.

Last night, when once again I couldn't sleep he came into the computer room at about 1:30 and asked me if I wanted to have a bowl of Corn Pops. Fast beats my heart... He leaves next week to go away to school. Who will I share Corn Pops therapy with when he is gone?

"Life Ain't Always Beautiful"

I really want to be strong about this MS discovery, but once in a while I just have to have a melt down. I am fairly certain it is allowed. Last night I temporarily melted into a puddle, but this morning I am back up and plugging away at it again. Those who love me are still learning to deal with this, same as me. Having me be a crying mess is not something my precious husband is used to seeing and it is probably difficult for him to figure out exactly what to do with me. How can he possibly know when even I don't know what to do with me?

I joined a Yahoo MS support group and one of the women in the group signs her messages with the quote "I used to have super powers, but my therapist took them away" That accurately describes how I feel. I feel like my super powers, the things that made me "ME", have been stripped away and that I am no longer the me that I knew. I told my husband on the night I was released from the hospital, that I felt like I went into the hospital as one person and came out as another person entirely. Before MS, I could leap tall buildings in a single bound. Now I have to carefully and methodically walk around the perimeter like an ordinary human being, less than an ordinary human being because I don't exactly walk so much as waddle.

I refuse to be ordinary. So this whole MS thing, it's just really not working out for me. I want them to take it back. I want to replay that day, Sept 1, in my mind and change everything about it. I want to sleep late instead of rising early. I want to lay around and eat Bon-Bons all day instead of packing up to go on a photo shoot. I want to yank the words MS out of my doctors mouth and stomp them into the floor. I want to climb up on a step stool with one foot again. I want to be able to dance again! I want to be able to get in my car and go to Target by myself instead of having to drag my reluctant husband along with me. I just want to be me again and this stupid MS won't let me. I have to find a whole new way to define myself. Who wants to do that at 49? I had plans.

I Am One Lucky Lady

Just when I was down and out. Just when I thought my luck had run out...I win the UK National Lottery. How lucky am I? Wow, now I can get the wheelchair ramp I have always longed for and a brand new tricked-out wheelchair.

How stupid do these email nerds really think we are?
I found this in my email today. I'm sorry, but if anyone is actually foolish enough to fall for one of these scams they probably deserve whatever happens to them as a result! The one I received last week actually asked me to scan my driver's license and send it to them to claim my prize!


THE NATIONAL LOTTERY
NOTIFICATION DEPARTMENT
ONLINE SWEEPSTAKE
PROGRAMME
P O BOX 1010LIVERPOOL, L70 1NL
UNITED KINGDOM
(Customer Services)
Ref: UKNL/05/8256/53219/QE327
Batch: UKNL5/A115-07
RE/AWARD BRITISH NOTIFICATION DESK

Dear Lucky Winner, We happily announce to you the new months draw (#994)of the UK NATIONAL LOTTERY, online Sweepstakes International program held on the 10th and 11th of September, 2006. It is yet to be unclaimed and you are getting the final NOTIFICATION as regards this.Your e-mail address attached to ticket number 55-9-478 with Serial number 1037 drew the luckynumbers: bonus no.04), which subsequently won you the lottery in the 2nd category i.e match 5 plus bonus. You are therefore been approved to claim a total sum of £1,500,000(onemillion five hundred thousand great British pounds sterling)in cash credited to file KTU/9023118308/03. This is from a total cash prize of £15,000,000 shared amongst the first ten (10) lucky winners in this category i.e. Match 5 plus bonus.All participants for the online version were selected randomly from World Wide Web sites through computer draw system and extracted from over 100,000 unions,associations, and corporate bodies that are listed online. Please note that your lucky winning number falls within our European booklet representative office in Europe as indicated in your play coupon.In view of this, your £1,500,000 (one million five hundred thousand Great Britain pounds sterling) would be released to you by any of our payment offices in Europe. Our European agent will immediately commence the process to facilitate the release of your funds as soon as you contact him.For security reasons,you are advised to keep your winning information confidential till your claims is processed and your money remitted to you in whatever manner you deem fit to claim your prize.This is part of our precautionary measure to avoid double claiming and unwarranted abuse of this program. Please be warned!!!. To file for your claim, please contact your fudiciary agent immediately for verification REV.NORLAN DAVIESFOREIGN DEPARTMENT MANAGEREWEEK SECURITY COMPANY UKCRAWFORD LODGE 98A REDCLIFFEGARDENS LONDON SW10 9HH, UKTEL: +44-7024078589TEL: +44-7031850204Email:claimsagent_norlan001@yahoo.com

Congratulations from me and members of staff of THE UK NATIONAL LOTTERY.
Yours faithfully,
Mrs Elizabeth Tyler
Online coordinator for NATIONAL LOTTERY Sweepstakes International Program.
====================================================================Copyright © 1994-2006 The UK National Lottery Inc.All rights reserved. Terms of Service - Guideline 77635 476378 255667460

Smile, You're on Candid Camera!

As I look back I have to wonder how many MS symptoms I have had that I have mistakenly attributed to the fact that I am 48 years old and at a ripe old age to begin the "change". How funny that it is referred to as the "change". I think I enjoy typing that. I find it hysterical. Maybe I am just having the MS giddies, but typing the"change" almost makes me roll on the floor. What exactly are we changing into?

My brain has been playing word games with me for some time now. It sort of reminds me of the game Boggle where you get a bunch of random letters and have have an allotted amount of time to make a word out of those letters. In my brain, I am given a bunch of words and each of them mean almost the same thing and somehow I have to figure out which one is best suited to what I am trying to say. I can't always do this, and as a result I may replace the correct word with one that jumped onto the tracks and hijacked my thoughts as the sentence was traveling from my brain to my mouth. In a second scenario, my brain takes two synonyms and changes them into one word. For instance, night + dark = nark. Yep, in my world nark is a word and it doesn't mean someone who has ratted you out for the drug paraphernalia hiding under your mattress. (For some odd reason spell check keeps trying to tell me that nark is not a word. Let spellcheck live in my brain for a while and we would have a whole new dictionary.)

Last week I asked my cat if he was enjoying his mirror. He is indeed beautiful and he may indeed be vain but he was sitting in a window (big sheet of glass) not sitting in front of a mirror (big sheet of glass).

Maybe it is just the "change" (I'm laughing again) that is causing this. I'm not sure. I do know that my very first visible lesion was in my brain and uncomfortably close to the little speech gizmo up there.

The Big Bang came when the numbness started in my leg. (See Blog Archive for September, It Starts.) Along with the numbness came a few more details that I failed to mention in It Starts.

I am a hot bath kind of gal. No shower for me unless it is a very hot day and I have possibly been doing yard work all day or if I am in a big hurry to go somewhere. I really like sinking into a steamy hot bath, stretching out and enjoying it for a while. On the day that I decided I should go to the hospital I had drawn a hot bath for myself. Since I didn't feel great, I could scarcely wait to have that warm water wrap around my body. Due to the position of our bathtub I always step in with my right foot first. My right side was the side with numbness. I had checked the water temperature with my hand as I was filling the tub. It was perfect. Imagine my surprise when I stepped into the bath with my right foot and it felt like I was sticking it into a bucket of ice water! I yanked it back out of there and reached in with my hand again to test the water. It was perfect. I stepped back in and as I lowered myself into the tub my entire right side, up to the top of my ribcage was chilled by the warm water. I felt like I was in the Twilight Zone, or like someone was playing a really weird "Smile, You're on Candid Camera" kind of trick on me.

When I got out of the tub, the cool air from the room felt as if it were searing my right side. Yep, definitely time to go to the emergency room.

While in the hospital I had a few sharp pains behind my left ear, experienced some muffled sound in my left ear and slight tingling in the left side of my face and lip. At this point they had told me they suspected MS but had not confirmed it. This new pain frightened me so I called a nurse. My LPN came in and gently asked if I might be having a panic attack. My first thought was how I am usually good at working my way through stressful situations on my own. I don't use meds to calm anything and I felt it unlikely that this was a panic attack. It just doesn't fit in with who I am. My next thought was, neither did I know that I had MS and it had been living in my body for a while, so maybe it was a panic attack.

The LPN didn't seem concerned and yet in my mind I was wondering if all this stuff might have been a stroke. I have a history of high blood pressure, although not very high and yet the word stroke had not been mentioned even one time since I set foot into the hospital. The LPN told me that the RN was busy and that she would be in to speak to me in a while. My pain and muffled ear issues subsided and in a short while the RN came to visit. She was a little older than most of the LPNs and RNs I had come into contact with. She was at least old enough to have a child in college where as most of the nurses were working to pay someone for child daycare. She sat on the edge of my bed in an "I need to tell you something" sort of way and honestly, I don't recall a word she said except for something about Valium and MRI. I finally said to her very bluntly, "They think I have MS" and she said very soothingly as she looked at me with eyes filled with compassion, "I wasn't sure if you had been told the diagnosis". Not suspected DIAGNOSIS, but DIAGNOSIS! Well now, that pretty much summed it up for me.

Just a side note: I had at least a week or two before the Big Bang, been experiencing some shivering. Sort of an uncontrollable shiver where your teeth chatter and you feel like you are really nervous about something, but you're not. I thought it was another menopause symptom and began to have new respect for the middle-aged women who reach for Xanax.

Side note #2: After coming home from the hospital and reading a message board for people with MS I found out that a weird internal vibration I had been having periodically for about 6 months is an MS symptom. I had spoken of this vibration to my husband and my sister long before I had an MS diagnosis. I could be sitting in my computer chair and I would just swear I was vibrating. Most of my vibrating was localized to the lower torso and near the groin area. Some of you might think Woo Hoo, now that would be fun! But I am here to tell you, it was not. It was creepy. So don't go and get too excited if you have been diagnosed with MS and think you are going to get some freaky fun out of it. You won't!

ID, WWF, WWE & M&M

Just a side note: You know you have a good sister-in-law when she smuggles peanut M&Ms and bottles of Coca-Cola into the hospital for you.

In an effort to decide why my white blood count is off the charts the powers that be decided to send an Infectious Disease Specialist in to see me. Can you imagine being my roommate and hearing that they are sending an infectious disease guy in to see me. I would be buzzing that bellhop to call the front desk and ask to have my luggage moved immediately but dear Rose just took it in stride. (Another side note...Never judge a 75 year old woman by her choice of television programming. The night I was wheeled into the room Rose was watching WWF which I found out is now WWE. Seems they have changed their name from World Wrestling Federation to World Wrestling Entertainment to emphasize the "entertainment value". I am just going to leave that one alone.) In spite of her television choices she was a delight in her own grumbly way and good for quite a few laughs.

The ID doctor decided there was no infectious disease issue which led to the neuro doctor deciding to have the lab take blood to grow a few blood cultures. I told them they could take what they wanted, but that all that was going to grow from my blood was sunflowers. I think they probably think I was on the wrong floor of the hospital, if you know what I mean. I also took to drawing things on their write-on, wipe-off memo boards. My last drawing was of a person in scrubs and a nurse's cap with fangs, huge bat wings and a huge hypodermic needle tucked under a wing, dripping blood all over the floor. This made even my one stoic no-nonsense HCA smile. I never actually admitted to being the culprit but it was fairly obvious since I was pretty much the only patient on the neuro-ortho floor who could walk by myself. I felt like a Weeble..."Weebles wobble, but they don't fall down."

On Friday I rode the V-Bus to MRI land again. This time they injected me with an enhancer so that the lesion in my neck would show up better. My wonderful night nurse had taken out the IV needle the night before because it was making the bone in my hand hurt. As fate would have it, the one time they might have needed to use the IV it was gone, so they just injected the enhancer with a hypodermic needle. No big deal. I had been poked so many times by then that one more certainly didn't matter.

Late Friday morning my Neuro came in to tell me that the MRI of my thoracic spine indeed showed another lesion and that this one enhanced, which I guess tells them it is still active and the culprit that was contributing to all my symptoms. Likely Diagnosis: Multiple Sclerosis

Armed with this information, I was thrown out of the hospital on Friday evening. I still had difficulty walking and they hadn't even decided on a treatment plan for me. You are, I'm sure, aware that the insurance companies know best what a patient needs and mine decided that I needed to go home.

MRI, or Valium is My New Best Friend

On Tuesday afternoon I had my first visit from my neurologist, a really fun guy who hands out Valium if he asks you if you can lie still for 45 minutes and you tell him, "only with drugs". He didn't come bearing the best of news. As of now he says I have symptoms of a classic case of MS. At least I'm a "classic" instead of one of those newfangled models like my vibrating bed. It seems there was something called plaque on my spine that showed in the CAT Scan so now they needed to do an MRI and look at my brain.

I am claustrophobic. Not in the same way that my older brother is. The way that makes you rip open elevator doors with your bare hands between floors if it hesitates for even a minute too long, but in an "I need a little air here" sort of way. I may have exaggerated just a bit when telling my doctor about the claustrophobia. I'm sorry, but if he wants to send me on a 45 minute vacation to la la land amidst all this MS insanity I am riding that bus!

My neuro also thinks out loud, is confident that he needs to be up front with you about everything (ummm, ignorance is sometimes bliss) and likely amuses himself by making possible MS patients walk an imaginary tightrope with their eyes closed. Hey Doc, I couldn't do that without MS!

So on the way to my MRI I decided to just pretend I was in a tanning bed. Mind over matter, right? Wrong! They are sneaky, those MRI people. They wheel you in backwards and never really let you see the tunnel you are about to ride in to. They stick ear plugs in your ears, pad the sides of your head to keep it from moving and then lock your head down with a Hannibal Lecter type gadget. They also stick a folded washcloth over your eyes in hopes that not being able to see will help you forget that you are in a tube being attacked by a magnetic jack hammer.

I love music so I decided to sing songs in my head while I was in there, but the only ones I could remember the words to were nursery rhyme type songs or songs from Sesame Street. "It's not easy being green..." Eventually I began counting. If the voice in my tomb said , OK Carolyn, This one will take about three minutes I would start counting one-one thousand, two-one thousand. I figured if by the time I got to 180-one thousand we hadn't moved on to the next step I would know the guy was lying to me. He wasn't, or I guess he could have been cause it is really hard to do the one-one thousand thing when you have had 15 mg of Valium. And just for the record, halfway through my MRI they decided they should flush out that unused IV again. Are they just bored?

Thankfully, I made it through the MRI without losing it and was wheeled back to my room. I hope I was really singing those Sesame Street songs in my head and not out loud.

They found an inactive lesion on my brain, a spot that told them that I have unknowingly MAYBE had MS for a while. The guy who read the MRI found something suspicious on my thoracic spine so it looked like I was going on another bus ride to V-Land for another MRI. I figured by the time they were done with all these tests I was either going to glow or stick to the refrigerator.

My neuro doctor asked if I wanted to see the pictures of my brain. I declined. I had this fear that there were going to be images of Big Bird and Kermit instead of the normal weird squiggly brain matter and I just didn't need to see that. Also, what if it was really small and everything I ever thought about my intelligence level was challenged? No way, I'm not looking at my own brain. Seems like bad karma or Midnight in the Garden of Good and Evil Voodoo to me. My husband of course, ran right out to see it.

Sleepless in Saint E''s

After applying ice and heat to my back all weekend, by Monday we had decided that maybe it was something more. I had spoken to my sister a few times and she expressed concern. I have a history of high blood pressure, although not terribly high, and the word stroke was spoken more than a few times. I eventually called my older brother who has run the gamut when it comes to back pain and asked his opinion. By the end of our conversation he had convinced me that I should go to the hospital.

I gathered things to take to the hospital in the event I should have to stay, and I would like to think I was applying the scout motto, Always be prepared, but in reality I would be horrified if someone else had to go through my "stuff" to try and find what I needed. So I hobbled around, gathering what I felt I would need all the while realizing that my left leg weakness seemed to be increasing.

I spent nine hours in the emergency room. I had an EKG, a CAT scan and a blood letting before they decided I should be admitted for a neurological work up. Before sending me upstairs to a room, my young and nervous ER doctor took the time to beat around the bush about what they suspected from the CAT scan and horrified us in the process. It was very apparent that he wasn't telling everything. As soon as he left the room I commented to Joe that he had scared me to death.

I eventually was moved to a room, but the new $16,000 bed was broken so I had to sit in a chair while they located another bed, wheeled the old one out and brought a new one in. Whoever thought these crazy beds were a good idea needs to be fired! They have a life of their own. Just when you think you are comfortable, the bed decides you aren't and growls and rumbles and rearranges itself, waking you from each and every possibility of sleep. Lets face it, this baby's got "BACK" and in order to accommodate my fluffy butt the bed kept deflating under it until I was sitting on the bed frame. Are all sick people skinny?

I eventually ended up trying to sleep with my head at the foot of the bed since it seems the foot section wasn't quite as sensitive as the torso and head sections. Honestly, I was ready to sleep on the floor. I would rather have had the ER gurney than this living, breathing, vibrating bed!

I don't know what made me think I would sleep anyway. Are nurses nocturnal? Do they just not like to see patients sleep? Are there secret cameras? Does a person watch these monitors and announce when one of us looks like we might be falling asleep..."Attention all nurses...Bed 15A is dozing. Quick, go take her blood pressure or maybe just for jollies, why don't you make her get out of the bed so you can weigh her." During the day they might check my BP and take my temperature a few times but at night I swear they must have checked it every two hours. They also felt the need at four o'clock in the morning to wake me to flush out the IV needle they had in my hand that never, the entire time I was in the hospital, actually had an IV hooked up to it. They even went so far as to try and get my roommate up at 3:00 in the morning for an MRI. She pretty much told them where to stick their MRI. She was a trip. (Wherever you are Miss Rose, I hope you are well.)

It Starts

It's amazing how quickly your entire world can change. You wake up one day and realize nothing will ever be the same.

Friday, Sept. 1, 2006 began as any other ordinary day. I am an early riser and this day was no exception. I had a maternity shoot scheduled for the day. By 7:30 I had picked up my son's girlfriend Nicole who was going to help me with the shoot and we were already loading equipment into my car. Before 9:00 my legs began to feel weak, sort of like rubber bands and I decided it was probably because I had not eaten anything. Over the course of maybe a year my body has really started fussing at me when I don't eat, giving way to wobbly legs and breaking out in a sweat. Even my mental sharpness would sometimes fade until I took the time to eat.

On this particular Friday I assumed that I just needed to eat. My photo shoots are very physical, especially if I use my portable pseudo-studio. I have to load, transport and set up a tent, climb up and down to hang backdrops and set up any props that I am going to use. Add to that the physical aspect of the shoot itself and I get a real workout. I am not much of a tripod user. I am standing on ladders, crawling on the floor...whatever it takes to get the shot I want.

As the day moved forward I just didn't seem to be able to hit my stride. Every shot was an effort. I live and breathe for these shoots and this day it was all such a struggle. By mid-afternoon I decided that I must need to eat again because my legs had not returned to normal. I took a quick break and gobbled down a pack of crackers and a drink. Eventually. I finished the shoot. Nicole and I loaded all the equipment back into my car and headed home. Fortunately my son Joe and Nicole were able to help me unload the car when I arrived home. I took about an hours break and then had to drive the 40 miles to Kent State to get my daughter and then the 40 miles back home.

Later in the evening I went to the basement to take a shower and on the way back upstairs I repeatedly banged my left big toe on the risers to the stairs. I can remember thinking I was an idiot but didn't think much more about it. I realized that I was tired. It had been a tough day. At bedtime I struggled to climb the stairs and after crawling into bed I realized that something strange was going on with my right leg. I could feel it if I brushed it lightly, but I couldn't feel pain if I stuck my fingernail in it. I told my husband about it a few minutes later when he came to bed. We both thought I had possibly aggravated my back while moving equipment that day and we went to sleep none the wiser.

Thus began my journey.