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.