25 September 2012

Have you ever seen the Disney movie, Monsters, Inc.?  Can you place the scene in which this image appears?
This is the scene where the monster "Randall" is choking / fighting Sulley. Randall is invisible, and Sulley is waving his arms around desperately trying to get Randall off of him & get rid of his invisible attacker. 

Multiple sclerosis is a hell of a lot like Randall in this scene. We can't see it - we never know when it is going to attack, or what part of our body will be caught in its evil grasp. Other 'invisible' illnesses are like that too - you just never know. 

If you recall - also in this scene of the movie, Mike comes in and is talking with Sulley - and Mike can't see that Sulley is being attacked. It takes a bad throw of the snow-cone ball to make Randall visible to Mike & eventually help Sulley overcome his attacker.

This fights right into the people that are in the lives of the person living with the invisible illness.  They can't see what is going on - and a lot of times they just don't get it - they don't understand that we can't always plan ahead - or drop things for a last minute party/gathering. People cannot see the fatigue we battle. People cannot see the weakness we endure. People cannot see the energy just getting dressed can consume. People just don't understand (easily) what they cannot see. Hell - I'm living it & I don't always understand it. What I wouldn't do for a friend to throw a ball of snowcone & make the enemy appear so I could finally grab hold and fight it back.

I write all this to say that you never know what someone else is dealing with - what just being where they are at that very moment might be costing them. If you know that someone is living with a disease/illness that you can't see - do all that you can to be a little more patient. Understand that sometimes, they just want someone there to hold their hand in silent support... and maybe throw a snowcone at them every now and then. :)

Snow cone anyone? I swear - its lemon!

24 September 2012

Happy Monday all. I hope this is the start of a good week for everyone. What is something your working on? Personally I mean? I'm trying desperately to become a braver person. I get so frightened of disappointing others that I find I sometimes give in a bit on what I really want or need - just in order to try to make sure they are pleased. I need to work on that. Suggestions?

22 September 2012

This morning I am sitting outside my daughters martial arts dojo where she is currently training for her black belt test that will take place in early December. I'm enjoying the warmth of the cool morning sun on my skin and a cup of coffee before I go inside to observe.

The students training here range in age from about 7 up to their early 60s. My daughter is in class with the adults for this portion of her training. She has been training with this academy for almost 4 years now and will continue until she tells me she wants to pursue something else. Personally, I think this has been one of the best things we have done for her. The physical and mental exertion of this sport has built her self esteem and I've enjoyed watching her turn into a very mature young lady. She turns 13 in October and sometimes even now I have to remind myself that she is still very young. She's had to deal with a lot and has picked up a lot of slack at home when I'm not feeling well. I truly am very proud of her.

What was I talking about? Oh - yeah!

Time to go inside.

Watching them move in sync is like watching a well choreographed play. It can be mesmerizing and the sounds of the sticks they use in their practice is reminiscent of popping corn.

I have to admit there are many times that I get envious watching them out on the mat. They move with agility and grace gained through hours of practice.

One of my biggest challenges with MS is balance and coordination. Something you need for most activities - which can hinder a lot of people with issues from pursuing physical exercise.

It's almost like we can get caught in this evil catch22... We want to have the balance and energy we need to exercise but we need to exercise in order to achieve the balance and it's proven that through exercise we will be given more energy.

So what do we do? Start small. (I'm talking to myself here too.)

I've started taking walks around the block. Slowly sometimes and sometimes using my husbands arm when I am having a bad balance day and am too stubborn to break out the cane again.

I watch in envy at the number of people that bicycle around town where I live... So (laugh if you will) but I bought an adult tricycle! I will be able to go for a bike ride without the worry that my balance will disappear when I'm out. It may sound silly, but it is extremely powerful to be able to take a bike ride with your kids. Something lots of people take for granted.

Little battle victories (like finding any way to be active) in this daily fight against MS can make winning the war that much easier.

21 September 2012

A friend gave me this magnet a while ago. I think of her every time I see it on my fridge. :)
Every now and then, something happens in life that makes you reevaluate everything that's going on around you. I recently had one of those days - and I would be lying if I said I wasn't still reeling from it.

Sometimes my MS is like that too. I can be going along just fine and almost able to forget it is something I have to deal with and accommodate for - and then BAM! I get hit with such a strong reminder - its almost like dealing with the diagnosis all over again. Does that make sense? I guess as long as we continue to fight - continue to get up when it knocks us on our backside - we are going in the right direction.

So - here's to each one of us - that gets knocked on our arse by life - that continues to get up and fight for the next day in the hopes that it will be better for us and those we love.

10 April 2012

I should start by letting people know that I am horrible about updating this blog page. Don't know why - I just get busy & it doesn't get done.  Search for me on Facebook - I am much better about posting there - especially since I can do it from my mobile phone. :)

I've been on Tysabri for about 6 months now.  Can't really say that I feel any better - or any worse.  I know many Tysabri takers say they feel 're-energized' after their dose. I sure wish that was the case for me! But - my two hours in the infusion center hooked up to the blasted IV fluids does little more than make me have to pee a heck of a lot for the remainder of the day as my body processes two hours worth of fluids.

At my last neuro appointment I was told that some issues I've been having recently (more loss of sensation, etc) are likely due to MS activity on the spine.  She looked back through my records & noticed (for the first time?) that I had some cervical lesions/activity back when I was in the diagnosis process in 2004.  Hmm... let's see - that was before I took this active of a role in what was going on with me. That was also the last time I had a cervical MRI.  So - the doc ordered one & I went to get that done yesterday. 

I hate MRI's.  Really and truly I do. However - I deal with them because... well - because there isn't much other choice - and I really have no desire to have a lumbar puncture (aka spinal tap) ever - EVER again.  The brain MRI's are what I've had frequently over the last 8 years or so - and I've figured out my own little method to deal with being in that cramped space for so long. I do a lot of deep breathing exercises when I'm in those things...
this Cervical MRI was different though. 

Do you know how hard it is to lie completely still for 45 minutes?  I mean 100% COMPLETELY still. No sudden leg/arm movements because it's all connected & will 'blur' the image of your spine / neck. Ok - so keep the arms & legs still... got it. I do my best there... now - NO swallowing.  I can't even go 20 minutes at my desk without involuntarily swallowing / clearing my throat. 

Try it. 

Swallowing is like blinking or breathing. In order to stop doing it - you have to really focus and concentrate on it.  As the saliva pools in your mouth forever - you think you just might choke on it if you can't swallow soon... but you can't because the blasted clicking of the stupid MRI machine is still going like mad.  Just when you think you can't take it any more and you're about to squeeze that panic ball they give you - the clicking finally ceases and you remain frozen - hoping that you're fears have come to an end & you can finally swallow & breath normally again & get out of that blasted machine.

*sigh*  can you tell I had a rough go of it in that machine?  What was supposed to take only 30 minutes - ended up taking almost two hours. Why? because I have involuntary leg/arm movements that caused the imaging to blur - so that section would have to be repeated.  then there was a few times when I just couldn't take it anymore and HAD to swallow / clear my throat.

Give me a brain MRI any day - they are a piece of cake... but I truly think if they want to do another cervical MRI - they are gonna have to knock me out and strap me down first... though I still don't know if that will alleviate the involuntarily swallowing...

16 February 2012

7 years

This July I will be facing my 7th anniversary of my MS diagnosis. There are times I lay awake in the middle of the night - my mind shuffling through all the worries that take over and dominate my thoughts...Many of the things I was told by the diagnosing neurologist have come to fruition – including my body’s poor reaction to just about every drug on the market. The one treatment I’m on now is the one he initially wanted me to take – but it had been pulled for further study. The hands-down scariest thing I was told was that within 10 years, my relapsing remitting MS would advance and become a primary progressive case. I know they have no way to know this for sure, but I look at my track record thus far and quite frankly, while I'm doing OK right now, I have blown through 5 different treatment options and am currently on the last FDA approved treatment now... because of extenuating circumstances, I can only remain on this treatment for so long – and that’s assuming I don’t experience any relapses while on it.  So what do I do next? If the original neurologist is correct, I have less than 3 years to get a hold on this dumb disease and begin charting my own course.  I’ve (re)joined a women’s fitness center and started on their nutrition program – likely subconsciously  grasping at straws – hoping that something will catch & head my system in the right direction… I think my husband knows this as well – but he’s not willing to talk about it out loud.  Maybe speaking the words makes them a bit more real?  *sigh*

Well – that’s where my brain has been the last few weeks. 


16 January 2012

MS Stuff...

OK - first some MS stuff...  We all know it absolutely sucks to have MS - and to put up with the ever changing tide of symptoms we seem to experience.  One of the most frustrating things I'm dealing with is trying to determine if things going on with the body is MS related - or not.  I never know what to ask the doctor about - and what to just ignore - know what I mean?  I definitely don't want to become a person that when asked 'how are you doing?' goes into a 15 minutes long diatribe about various aches/pains/spasms, etc. - and so I will admit that there are likely things I should talk to the doctor about that I don't... My brother gets completely & totally upset with me when he doesn't think that I'm giving him enough accurate updates on how I'm doing.  I'm not sure he completely understands though... when a person hurts 99% of the time - they get accustomed to that pain... the more I dwell on the things that hurt or cause discomfort - the more hurt or discomfort I feel.  Does that make any sort of sense? Might be odd logic - but it makes sense to me...

May your week be healthy - and pain free! :)

11 January 2012


It's been quite some time since I actually took time to sit down and click out a message to be posted on this site.  I have to say that I don't seem to be very good with staying on top of things so much anymore.

Let's see - a quick recap since October?  Okay - here goes.  November was pretty full. My husband had a surgery a week or two before Thanksgiving.  In the midst of his drug-infused recovery - he decided that we should go ahead & move into a larger place - so our girls wouldn't have to share a bedroom any longer.  Best of intentions, right? So - we spoke with the landlord & they were only going to be able to hold the unit for a few weeks... this meant that we were moving the week after Thanksgiving! With my husband still in recovery - he wasn't able to do much - so the lions share fell to me... and thankfully my father was able to come down from Portland to help. Can't tell you how helpful that was! (THANKS DAD!!!) So - that meant that between November 30th & December 3rd, we moved. (We're still putting away the last of the things & going through the last of the boxes!)

As soon as the move was done - and I mean two days later - on December 5th, I had to leave for a work trip. We had a sales meeting that I helped coordinate. So the 5th through the 8th I was out of town. Up late each night & Up early each morning. Quite exhausting - but the meeting went off without a hitch & only two 'problem children' out of a group of almost 200 - so that's pretty good statistics! I got home late on the 8th & hit the hay shortly after walking through the door.

December 9th had me back at the office - placing the finishing pre-planning touches on the company holiday dinner that I had planned for December 10th. A great dinner - in a great location - with great raffle prizes. My girlfriend Erin really helped out a LOT for that event. I literally couldn't have done it without her.  (THANKS ERIN!!!)

Once that event was over - it was getting year end stuff finalized at work - trying to get Christmas shopping completed - the holiday dinner(s) planned & worked out. Christmas came and went & well - I survived! We all survived!

Here it is the 11th of January. I'm still exhausted - I think that the last two months of go-go-go are really beginning to rip me a new one... so I'm trying to learn how to slow down. Making my daily task lists and trying to get at least one thing checked off each day.

Hmm... did anyone make a new year's resolution?  Mine is trying to eat dinner at home more often... so far (again - we're talking only 11 days) we seem to be doing pretty darn good.  We broke down one night last week & I picked up burgers on the way home - but so far, we're doing pretty well.  Maybe I'll try to post something quick - short - each day about what we did for dinner... that will keep me honest at least!

I sincerely hope that everyone had a super fantastic holiday - that you've recovered well from the holiday treat withdrawls - and that 2012 is a year full of health and happiness!