New Lesions

I found out last Thursday that my MRI showed that I had new lesions in my neck.  My neck and spine have previously been untouched, but this shows that my MS is still active.  But my doc is jumping on it fast and will schedule 5 days of iv Solu-medrol to hopefully take the inflammation down.  Good thing I was at the grocery when he called, I picked up a few extra groceries so I could use my forced laziness to not leave my house too often while the IV is in.  On the flip side of that, my house is actually clean, so if anyone wants to visit. I will be kinda bored.

so on Friday when the pharmacy called to set up my infusion to begin on Saturday, I instantly became non-dizzy and could walk a semi-street line, I actually thought to myself, "Do I really need this? 5 days?"

Then the next morning, I woke up and stumbled into the wall. 5 days it is.

One of my best friends always says we are all on our own journey. I guess this is mine. Although, I would like to learn how to journey around the walls once in awhile.

Sometimes I like to sing the names of my medications....

To some of my favorite '80's songs.  Today, waiting on Lisa to pick me up for my second MRI of the week, I was enjoying my Ativan cocktail while humming the chorus of "Xanadu".  I think it fits quite well.  Sing it with me "Ativan.....Ativa-an".   See? Not bad.  Earlier in the night, say oh about 3 am when I couldn't sleep AT ALL, my mood was a little different and I really thought I would be singing to the tune of "Amadeus, Amadeus".  See what you think about this "Ativan, ativan, ativan, ativan, ativan, ativan, ativan, ativan, at-at-at-ativan oh, rock me ativan!"

It was a long night. 

I really thought I wasn't one to get nervous over things like this, it was just an MRI.  But when the last one didn't take because of my muscle spasms on the inside, that I can't even feel, messes it up, I guess I realize I'm at a new level.  It's a strange sensation to wish that the scans show something is wrong, or something new has raised it's ugly head.  I am kind of tried of being frustrated and thinking people look at me like there is nothing wrong with me.  Or when I stumble getting up from a chair, or walk into a wall.  First thought seems to be, what is she drinking!  And while I may have a glass of wine on occasion, it's not usually before work. 

I have been doing a lot of praying lately because of some work crossroads that I possibly will have to face.  About 4am this morning, I realized that while I may have said I was frustrated, I think I'm really scared.  Wacky things are going on and I'm just trying to deal with them the best I can.  I start to feel like I shouldn't ask people to help me, cause what if that's just the last time they got for me. 

I don't wanna be a bother.  I get that from my Aunt.

I'm gonna get in bed and read now. Tomorrow could be a whole other adventure, especially if the doctor calls.

Sigh....

Big day for me today! MRI of my brain, neck and spine.  I wake up on time, mainly because I didn't sleep well at all.  Got dresses, took my ativan. Fun drug, by the way. Kept me calm, comfortable and basically carefree! Happy-ish.  The main issue that I had with my symptoms is the tightening of my leg muscles and my brain's refusal to let me relax them. And then there is the little issue of my muscle spasms. Uncontrolled, of course.  So if I happen to walk by and hit or kick you, chances are you can blame that on the muscle spasms.  Chances are....

So now, I get to blame the spasms on going  back on Wednesday to finish the MRI. Apparently, even though I thought I was being still, the spasms inside made a lot of the pictures blurry.

I wanna be sedated.....

Another MRI? So soon?

I'm really, really looking forward to Monday!  No, really!  My doctor gave me Ativan to get through my very long MRI of my brain, neck and spine.  I haven't taken Ativan before, and I'm not opposed to new medications.  It's no Nyquil, of course....

I spent 2 hours at the neurologist's office today, discussing why I may be starting an episode...dizzy, funny eyes, twitching and muscle issues.  And hearing my doctor tell me that he doesn't know what the next few years hold for me.  I'm not mad with him, just frustrated with how many times I (and anyone with MS) has to hear the words, "I'm not sure", "It's too early to tell", "It's different for everyone". 

But life is about growth.  And I am learning to trust God with things I can't control.  Definitely, multiple sclerosis is one of those things.

A much needed smack on the head...

I'm still trying to figure out quite a bit about MS.  And the paranoia has definitely set in.  How do you know if something that happens is a weird coincidence or the start of a relapse?  I had this conversation with my doctor a few months ago and he seemed to calm me down, but it is back. 

The evidence:
A)  A few days ago, I started with a bit of a dizzy spell that has hung on somewhat.  This is how everything began.  Also, just about everyone I know has had some sort of a sinus infection and that can cause dizziness.  I, too, have been sneezing lately, but not enough to warrant a call to my family doctor.

B)  The right side of my tongue is feeling kind of funny.  Also one of my first symptoms.  And, while shopping last night, I saw some artichoke hearts at the store yesterday.  Artichokes were in the meal I had the day my tongue went numb.  Coincidence??  Um, I'm not sure.

C)  I am super tired!  But I never was one to turn down a nap, and I have been known to sleep, and sleep, and sleep.... MS or not.  This could also just mean that I am lazy....

D)  I stared at my friend for an unusually long time because I couldn't think of the word "Winter".  Not only could I not think of that word, but I couldn't remember any words.  This was one of the issues I had in the hospital.  But on the other hand, I'm not exactly brilliant, so it may just be nothing.

Even when I put all those things together, I don't have a good answer.  And neither does the doctor.  It could be the start of a relapse.  It may actually be a relapse, but since I'm on some good medicine, it may not get any worse. 

So, my conclusion is:
STOP THINKING ABOUT IT!  STOP TALKING ABOUT IT! 

Um, OK, Mary....You don't have to hollar at me (or yourself) like that!

Here is what I am saying, and I think it can pertain to a lot of things -

Stop stressing about (insert problem here).  Worrying isn't going to add a day to your life. 

Be appreciative of what you have, even if it is a problem, because problems usually teach you something.  And they let you know you are alive. 

And as a bonus.....Be thankful for who you have in your life because you never know when they will be gone. 

Try not to use the words, "I'll do that later."  Later may not come.

Until exhibits A through D really hit me in the head, I'm not going to stress about it.  I'm going to be happy that I have something to blame my crooked walk on (other than my 2 left feet).  I am also going to be happy that at my sister's wedding next week I can dance however I want, cause I have lesions and they have sucked the talent right out of me!

And after last night, which was full of shopping and back-drafting laughter that I had not done in a few months, looks like my cup maybe just about up to it's beginning level of 3/4ths full.

D for "delightful"

The long weekend is over.

There isn't much pumpkin pie left.

I have done a bit of Christmas shopping.

And my Vitamin D level is low. 

I mean, really, really low.  And just so everyone knows, I cannot just drink some extra milk.  But I do appreciate you suggesting it for me.  Holy cow!  I would have to drink a lot of milk to make up for the 50,000 IU of Vitamin D I now have to take.

So, why is it so low?  There have been debates about the correlation between Multiple Sclerosis and low Vitamin D levels.  And there have been studies that say Vitamin D can prevent or slow the progression of MS.  I'm just kinda happy that I found something that says why I may have gotten MS. 

Of course, I could have a low level because I am Irish and only get sunburned, so I stay out of the sun as much as possible.  Another reason could be that I spent the last 5 years of my life working on patrol at night and sleeping during the day.  Maybe that made me more prone to get MS.  I didn't realize that all those days cuddled in my bed with the curtains drawn caused my brain to be cookin' some lesions!  No wonder my retinas are so sensitive to light.  I wear my sunglasses at night.....

I started my prescription Vit D on Saturday.  I'm really enjoying the long list of medications I am taking.  The most important information I check on them when I first get them filled is the list of side affects. 

Pretty much if it doesn't say "weight gain", I will have no problem taking it.

"Funny the way it is..."

I really need to get back in the habit of updating this more often, for no other reason than it is cathartic for me.  And I love a good catharsis every once in awhile.... And, maybe someone will read it and get a kick out of it, or realize they aren't the only one with wacky stuff going on.

I expected to leave my neurologist's office full of snark, but with my new attitude, I was all smiley!  He told me my balance is getting better.  Not perfect yet, but I mentioned that he didn't know me PL (Pre-Lesions) and that it wasn't that great to begin with.  He upped one of my medicines that should help with the muscle twitches.  I think it does, but maybe I have just gotten used to them.  Either way, they don't bother me as much, so it's a winning situation for me.

I left the office with an appointment for another MRI to see how my brain is doing (go ahead and insert your jokes here).  They got me in just a few days after my visit.  Apparently they are all fans of working very expeditiously.

I know a lot of people do not like MRI's but they really don't bother me too much even though they are noisy and you can get a little claustrophobic.  They let me pick what music I wanted to listen to.  I haven't had that option before.  So, since I just try to zone out during the test, I picked Dave Matthews Band.  It's kinda hard for me to understand what he is singing, so combining his mumbling with the noise of the machine, I was still able to just zone out...

They gave me a CD of the images they took of my brain.  Isn't it cute?  Check out my eyes!  You can't tell in this picture, but they are blue with orange splashes.

Of course when I got to a computer, I tossed the CD in and tried to see if my lesions are better or not.  After looking at over 600 images, I realized that I am not a doctor and even though I know what the lesions look like, I don't know if they are new or old, bigger or smaller.  So I will wait for him to call me back.

He did.  And it wasn't all bad.  The other lesions I have seem to be "quiet".  I felt like I should have been whispering when I was on the phone with him so they wouldn't "wake up".  But what this meant was that the medicine I am on seems to be doing it's job.  However.....

Here is a new lesion...



Here is a new lesion...



And here is a new lesion...

In keeping with the whole "can't really tell you much about this disease" thing, it is unknown when the new lesions popped up. I didn't start my shots until 2 months after I was diagnosed and I wasn't on the full dose for 6 weeks - it doesn't really start to work for at least a month.  What the new lesions mean, though, is that the disease is still active. But since my new symptoms are controlled, I am just going to continue on what I have been doing and, barring any odd episodes, I'll have another MRI in a year

I can live with that.

 So, doc...will you change anything on my work restrictions??

He kind of did. He said I have a "neurological condition" and that it caused some "gait unsteadiness". "Climbing or careful balancing might be more difficult" for me. And he said I probably shouldn't chase bad guys over rooftops. Not a problem. Heights are not my favorite thing. And if I encounter a incident that requires me to carefully balance on a
tight rope between buildings, I'm gonna have to call for backup.

Now if I can just get the city doctor to agree....