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!

06 October 2011

Comparing being an MS Patient to being a Parent

I came to a realization this morning that publicly having Multiple Sclerosis is a heck of a lot like being a parent & raising children.

As a parent you receive TONS of unsolicited advice on what to do / how to treat something, etc. - all that is given with the best of intentions from the sender - but can be totally unwanted by the recipient!

Like I said, I came to that realization today when I was doling out some 'parenting' advice to a friend.  Good grief. 

I almost choked on my humble pill.

27 September 2011

I haven’t posted in quite a while… that seems to be a consistent beginning to posts for me lately – doesn’t it! :-/ Sorry about that.  A LOT going on right now.

I wanted to label this post as ‘brain vomit’ – but I figured that wouldn’t be very appealing – so I’m leaving it untitled for now.

Back in July – I posted about having to stop the oral treatment I was on because it decided to wage war on my liver (big bummer) and that I’d have to start another treatment. Well – I can expound a little bit about that now.  The last treatment option for me (that is FDA approved for Multiple Sclerosis) is Tysabri. That would be the medication that was pulled from the market for a time when I was first diagnosed around 2005 because of deaths related to PML – a rare & untreatable brain infection.  This drug has returned to the market after more research & I’ll try to sum it up in a nutshell… The researchers discovered that there is a virus – the JC Virus – that is the precursor to PML… Normally – on its own, JC Virus doesn’t really do anything to you however if you have the JC Virus – your chances of developing PML while taking Tysabri is much MUCH higher than if you don’t. (Just like MS, no one knows how one contracts the JC Virus). That said – the researchers developed a blood test that can check to see if a patient has the JC Virus or not. A good step in the right direction and should remove some of the risk associated with Tysabri treatments, right?

So – I requested to find out how to get tested for the JC Virus before I started on this new treatment. It took quite a long time – but I got the results to that blood test yesterday. Guess what? I tested positive. DANG IT!

In the same breath that my neurologist told me I tested positive for the JC Virus – she continued with “I still think you should start Tysabri anyway – however, you’ll just be limited to only 12 doses (one year’s worth of treatment). After that we’ll have to re-evaluate & find something else – likely transfer you to a doctor with UCSF or another doctor that is more MS specialized.”

I’d be lying if I said I remembered much else of the visit after that… my husband tells me that the two of them discussed exactly what this meant & how the chances of getting PML during the first 12 doses is negligible at best… yada yada yada.

As we were leaving the appointment, he walked me to the infusion center & we scheduled the first dose for next Wednesday – Oct. 5th.
·        So - I haven't yet started Tysabri - but I'd be lying if I said I wasn't scared to do so.
·        I'm told (by my medical team) that it's my last 'on-label' drug option. I have the neutralizing antibody to interferons - so the rebif, avonex, betasaron drugs are basically saline solution once injected into my system. I'm told that copaxone isn't a good option for me (which is good since I don't think I could do the daily injections and be consistent with it). I've tried the new oral medication (Gilenya) and was kicked off that in less than 3 months because it put me at near liver failure stages... I've even done a medical trial for 'BG-12' and continued to relapse on that and was removed from that trial.
·        So here we are... one last drug to try before we truly start grasping at straws… and I’m positive for the JC Virus. Of course. But - in spite of this, my neurologist and husband are pretty adamant that I begin Tysabri treatment. I've had such a crappy response to every other drug I've tried (meaning I seem to be in that small group that has the bad side effects) I'm scared witless about starting this treatment...

·        *sigh*
·        I think I'm becoming resigned to it - but that's not exactly how I want to be when entering into a new treatment option.

07 September 2011

I'm what one would call moderately active on Facebook. I belong to a number of different groups - some are patient groups for specific drug therapies, and others are general non-profit / MS related groups.  Today - as I was checking in with the groups I belong to - I got fed up - and posted a somewhat negative comment just a few seconds before I clicked on that lovely 'leave group' button ... here's what I said:

I don't generally post negative comments - however - I strongly feel the need to add a comment on this page as to 'why' I am 'leaving' this group. My understanding is that this page should be used to discuss the ***(removed)*** - and NOT to be used for others to attempt to draw profit for their own causes/products, etc. Unfortunately, that appears to be happening here & it drowns out the actual message of the ***(removed)***. Each individual posting their wares may have the best of intentions - but I find it highly unethical to use this board for trying to solicit business to your site/product. Very disappointing. I only wish this page were better moderated - as I truly believe the ***(removed)*** could help many people and facebook would be a great way to reach out. I truly hope that those that can actually use ***(removed)*** information are able to wade through a lot of the superfluous stuff on this page and can actually find what they are looking for - without being waylaid by the various advertisements others post here for their own profit.

I guess I don't understand some people and the way they think.  To me - what these people are doing is just flat out wrong! In my opinion, this would be just like having Nordstroms advertising INSIDE a Macy's store or circular... I don't understand why people think this is okay.

I was expecting (and still am braced for) a full backlash from those that disagree with me on this particular site - however, with the few messages and supporting comments placed on to the post I left on my way out - I know that others were just as exhausted with that junk as I was... A few people actually took time to write me a note of thanks for pointing out their frustrations publically. 

*sigh*  It's so frustrating that when there is something honest - and good - that others feel the need to jump on board and hijack the discussions and try to make a personal profit from it.

What do you think?

15 August 2011

A fellow MS'r messaged me recently - asking about body heat. I thought I'd share my response with you too...

What I've found - with my MS - that my body tends to act like one of those socks full of rice that you put in the microwave.

It sounds odd - I know - but hear me out.

I can feel just fine & be moving around doing stuff - without any problem at all - then bam! The heat hits out of the blue & I'm sweating like a stuck pig for no comprehendible reason. Kind of like one of those bags of rice I was talking about. You can take it out of the microwave & it doesn't necessarily feel very warm at first - but all the sudden, the grains of rice shift a bit in the bag & it's super hot.

Same thing happens to me at night. I sleep cold - under covers. Then about 10 minutes after I wake up, I'm dripping from all the pent up heat that has finally decided to escape. Again, the same thing happens after I blow-dry my hair. About 15 minutes after I'm done getting ready, I'm so hot I can't do anything. Super crappy too – especially when you have to redo runny makeup!

I've had to learn to adapt & switch my schedule around so I don't have to do so much in the morning to get ready - but it isn't easy and is a pain in the butt to deal with.

I'm so sorry you're experiencing this symptom. Just know it for what it is - a symptom of the ever changing world of MS.

For me - the more it happens, I know when I look back there is more stress associated the few days surrounding the 'episodes'. I like to think of it as my body’s way of chiming in and telling me to 'cool my jets' for a bit.

Cooling vests are a great thing if you can afford them. They also have mini ones that just drape over your neck too - like a bandana almost.

19 July 2011

Crappy Juggler

Learning how to balance everything in my life is something I've been working on for such a long time. Seems like just as soon as I figure out how to juggle everything and keep all the balls in the air, something else is thrown at me and I end up focusing too much on catching the new ball that I drop all the other ones I was keeping in the air so well. *sigh* I wonder if I am the only one... Pretty sure I'm not. Here I am fumbling around and trying to get everything picked up and slowly working things back into a new routine.  I'll get there. Thankfully I have a great boss that understands.... well as much as possible anyway.

18 July 2011

Rude reminders.

Sometimes having MS really sucks more than others. Most of the time I am able to pretend that there are no impacts on my life from it... Well, that is until it rears its ugly head and reminds me in one way or another.
MS has been reminding me of its presence the last month or so - this time through some not so great lab work. To make a long story short, I have to stop my current treatment plan and start another. If this next treatment plan doesn't work, I would then be out of options for FDA approved MS drugs until the next new thing hits the market.
Well- fingers crossed. Here we go again.

28 June 2011


I was reading a posting on facebook a few weeks ago - someone asked about disclosing the MS diagnosis to a potential employer... hmm... really made me stop and think for a few minutes before I responded.

My personal diagnosis process was such a public matter at my current place of employment that keeping it 'quiet' just wasn't possible. My employer sent my drivers license through their insurance & I found out a doctor that suspected either MS or Seizures had placed a medical suspension on my license... all unbeknownst to me until I was asked by my new boss why my drivers license was suspended! yikes! Well, that started the ball rolling and a number of months later I received my diagnosis. (You can read more about that in earlier posts here.)

I go back and forth a lot between being thankful/grateful that my diagnosis is such public knowledge at this company & wishing that I could rewind time & keep it to myself.  The latter isn't an option, so I've embraced the fact that everyone knows that my life is going to be full of ups and downs. I'm very fortunate to work for a company that will celebrate my 'ups' and be understanding/flexible when I'm in the midst of a relapse.

There is so much mis-information / mis-understanding about exactly what the diagnosis of MS means, that my ultimate recommendation to this person was to keep it quiet for now. Another ‘poster’ on the  board said it best, I believe, when they said that you can’t ‘un-tell’ anyone anything. There are days when I get looks/questions, etc from people and it can be almost too much to bear. I get so tired of hearing about how I look like I’m doing really well. The adage – ‘you don’t look sick at all’. It is almost like people think that MS is an automatic death sentence. Again, this (I believe) is because of the lack of awareness and misunderstanding that surrounds a diagnosis…

The most frustrating part of having MS is in fact the unknowns. I know I have them.  During a somewhat severe relapse for me last summer, I was asked by my boss a very fair question – where do I see myself in 5 years, 10 years, etc. I was taken aback for a moment – but answered with the utmost honesty. I’d like to see myself right here. Just as healthy as I am today – just as able bodied as I am today – but I can’t see into the future. God didn’t grant me a crystal ball. 

As I think about it now, the same question can be (and quite often is) posed to fully healthy individuals as well. Like me, there is absolutely no way they can tell 100% where they will be in 5 years, 10 years, etc. I think the difference is that as a MS patient, we are forced to look the uncertainty square in the face on a daily basis.   

This actually makes me look at things differently. I don’t take as many things for granted. Should something happen to me, I will be able to say that while I will always wish I could have done more, I’ve done a lot. I’ve learned a lot. I’ve listened a lot.  I am thankful for what I have and every day I can walk without a cane or food brace I am ecstatic! Little things that most ‘healthy’ people simply take for granted.

So, until the cure is found for this disease, I will be the 'Face of MS' for my co-workers. Hopefully they will all be a little more aware and understanding of others along with it. I will still have days I wish I could 'un-tell' everyone - but I'll get through it just like every other MSer out there.

Until next time,


17 May 2011

I'm learning that it is entirely possible to be tired - of being tired!

I don't know if it is life going non-stop for the last 7 or 8 weeks - or if it is the new medication (Gilenya) that I'm on - but my fatigue levels have been pretty bad the last few days.

Didn't know it was possible to do - but the other day I actually fell asleep at the dinner table! Not entirely as bad as it seems - dinner was over, kids were upstairs getting in the bath and Randy was in the living room watching one of his shows. I just didn't have the energy or desire to get up from the table and climb all the stairs to get to my room... so I put my head down & next thing I know - its the next morning. Somehow my husband got me up the flight of stairs & to our room.

There are medications available to help fight the fatigue (I have Provigil) - but I'm learning that if I take it every day - my body seems to build up an intolerance to it & it just doesn't work very well - if at all.

As I yawn here at my office desk - I realize that I've gotta get up & drive home now... I see another early bed time in my future.

09 May 2011

Belated Mothers Day

Happy Belated Mothers Day!

A day late - but for the mothers out there - I do hope you had a fantastic Mothers Day on Sunday.

I was reminded too though - that without the men in our lives, we wouldn't have been able to become a Mother - and without our Children, we would have never experienced the "joy of parenthood" - so in our family yesterday, we had a relaxing family day & I loved every minute of it! :)

I know not all my posts are centered around Multiple Sclerosis - however - we have to remember that MS is only a very small part of the person. Without my family/friends, there wouldn't be a whole lot of reason to put up such a fight against this stupid disease every day.

Have a wonderful day everyone.

08 May 2011


Why am I writing this?

Most of the medications on the market for MS are a type of Interferon. For most people, this is just fine... however - the body can create what is called a "neutralizing antibody to interferon" - which in effect means that the medication is neutralized in the system & you might as well be injecting saline solution into your body.

I was diagnosed with MS almost 6 years ago. I immediately began on Rebif - then had to stop due to pregnancy. Beyond that I tried some clinical trials, but was kicked off of those within a year due to low heart rate & liver enzyme issues. Over the last 2 or 3 years (up until late last summer) I was on Avonex. Currently, I'm on the oral medication, Gilenya, that was released to market late last year.

I never knew anything about the body creating this 'neutralizing antibody to interferon' - and was NEVER tested for it until I was fighting to get on the new oral. I just found out this last week that I possess this antibody - so basically the treatments that I've been on have pretty much been worthless for me.

Could explain a heck of a lot.

So - now I'm on my little platform - informing everyone I can possibly imagine - posting nearly everywhere I can think of - begging MS patients to request this test from their neurologists before wasting more money & exerting more frustrations over medications that may not be working in their body.

PLEASE - Spread the Word to any MS patients you know of that are currently on an injectable MS treatment plan. Isn't it worth the few bucks - to confirm whether or not the medication they take can/will actually work in their system?

Unfortunately, this is NOT A STANDARD TEST for some reason. I would think that this should be something the neurologists test every MS patient for BEFORE starting them on any treatment plan!

I asked my neurologist what this meant for me - should the Gilenya (not an interferon by the way) not work. For me, the next step would be Tysabri... so we'll give the Gilenya a try & hopefully it will work! :)

07 May 2011


Yesterday was my yountest daughter's 5th birthday. I can't believe how quickly my little girls are growing up. So sad... but makes me very proud to see what incredible people they are becoming.
Today, we are having Heaven's birthday party at the park near our home. :) Should be a lot of fun... keeping it simple - but still a lot of prep-work.

Have a wonderful day everyone!

06 May 2011

I Won't Let Go

The last few weeks, it seems that life and the world around me has been running at full-speed & non-stop. That - along with some MS issues that have decided to rear its ugly head - well, it's exhausting... but things have to get done, right?

I'll admit - I've been exhausted lately. I've been moving a bit slower at times too.

This morning, when climbing in the car with my husband, he turns on this song - and tells me that it is his 'song' for me.  Take a listen:
This song is called "I Won't Let Go" and is by Rascal Flatts. Tears will now forever come to my eyes when I hear this song - as it will always serve as a reminder for me just how incredibly lucky I am to be married to my husband.  There will always be times that we disagree - and that we don't see eye to eye - but more than that, we will always be together and completely in love with one another.

04 May 2011


The Walk MS Events are over!

My family spent the day with me last Saturday at the Folsom Walk MS Event - and then again on Sunday at the Sacramento Walk MS Events. 

Both were huge successes.

The Friday before the Walks, I decided it was time to buy a new pair of tennis shoes. It took trying on nearly 20 different pairs at multiple stores before I found the pair that fit comfortably with very little adjustment... ended up with a pair of Nike Air - that are grey and almost a fluorescent orange.
Not planned - but worked out great with the black & orange colors all around for the NMSS! My admission - I have *never* spent this much on one pair of shoes... I just gritted my teeth & looked away from the machine when it asked me to verify the amount. (They were $70.) But - these shoes kept me on my feet all day both days. :)

Well - looks like my MS Fundraising this year brought in nearly $3,000! YEAH! :) Every bit helps - so THANK YOU to everyone.

Well - family duties call - so I'm off & running (in my Nike's)!

26 April 2011

Alternative MS Treatments: NUCCA & CCSVI

After reading numerous posts all over the web regarding NUCCA & CCSVI - I started to do a bit of research & learned that many NUCCA chiropractors are comparing the NUCCA treatment to a 'non-surgical version of CCSVI' - so I thought - what the heck... I'll check this out.

I'm thinking I should have done a bit more research on the actual NUCCA process & treatment. I understood that it only focuses on the axis - to take pressure off the veins & allow proper blood flow. What I didn't look into is the actual process of the NUCCA adjustment.

Here's my experience -

I found a practicing NUCCA chiropractor & went in for an initial consultation. He did lots of tests - measuring my leg lengths, checked the temperature differences on either side of my neck, took measurements of hip alignment, and about 4 x-rays of my head/neck. Then he had me come back the next day to go over the xrays & for an initial adjustment. The adjustment was where I felt things go a bit 'off'. As he had me lay on the adjustment table (which was only about 4 inches off the floor) & he proceeded to 'adjust' my neck by placing his forearm at the base of my skull & I began to feel his ENTIRE body shake with what felt like tremors/seizure. My eyes flew open & I tried to see what he was doing. What I saw was his other arm making odd pulling motions - like he was somehow mentally 'willing' my neck to realign & visualizing pulling things back into place. I don't know about you - but I found this to be quite kooky.

Here's my thoughts -

Will I go back? Not likely. I felt absolutely nothing. I understand the thought process & idea behind the process - but feel I need to do a bit more research on the actual NUCCA process first to find out if I just happened upon a quack of a doc - or if this is actually the real thing. (On a side note - I have gone to traditional chiropractors since I was very young. I totally believe in the body's natural ability to heal oneself & that the bodys alignment is critical to this process. In addition to MS, I also have multiple scoliosis with more than 4 separate curvatures in my spine & no natural curvature in my neck. There are portions of my back - mainly the bra line area - that I have zero sensation in. So maybe this NUCCA process isn't going to be what I need or what I'm looking for.

Hmm... leaves a lot to be thought about.

What do you see when you look at the people around you? Or – maybe the question is better worded – what do you think when you hear someone’s name mentioned?

For example – when someone says Brett Favre – for 99% of people the thought that immediately comes to mind is football. I don’t see an image of the man anywhere other than on the football field – but surely there is so much more to him than that.

The same things can be said for people we see or talk to every day – whether online or in person. What do people see/think when they hear my name – or see my face?

I was ‘gifted’ a collapsible cane by someone I love dearly recently. I totally froze when it was handed to me. I know it was given out of the most sincere thought & with much love – but I have to say – that it has been bothering me… It really brought up a thought – I’ve been so totally open & honest about my life with MS… has that been a mistake? Does being so completely honest make others see MS before they see me? This is a thought I’m struggling with.

When someone thinks of me, I don’t know that I want ‘MS’ to be what first comes into their mind.

However - with that said, that doesn't mean that I will stop trying to raise awareness - or that I will stop doing what I can to help fundraise for research - or that I will stop fighting this war.

25 April 2011

I’m sorry that I haven’t updated this thing in a while. Seems life & work have decided to make a short excursion into hyper-drive! Work meetings, kids travelling, Walk MS preparations… yikes!

So much has been going on lately. My kiddos just went to spend a week with my parents in Oregon & had a great time. My youngest (not quite 5) made the trip for the first time… a big change for her – as this was the first time she was away from us for more than a day. She enjoyed time with grammy & poppy – but was ready to come home. My husband and I spent the week much like any other – working late, going to sleep early… learned we’re a pretty pathetic couple when it comes to going-out! By 9pm, we’re exhausted & ready to catch some z’s!

The walk is coming up on Saturday. I’m hoping that I can bank some energy this week & make it through the weekend. Goodness knows that I seem to be running on fumes yesterday & today… praying that isn’t a ‘sign’ that MS is about to rear its ugly head once again.

I’ve been on Gilenya now for nearly 4 weeks. I have my follow up appointments scheduled for next week – though I may call the ophthalmologist & see if I can’t get in a bit early. My eyes have been killing me… hoping that means just a simple prescription change & not a bout of optic neuritis – as that would mean that I cannot continue on this medication… and that would be bad news.

Good news however is that the Folsom CA Walk MS event has surpassed its fundraising goal! That doesn't mean though that raising even more funds isn't important! So much research still needs to be done - and so many people still need vital help that the NMSS provides. You can even Donate by CC online. Every dollar makes a difference!

04 April 2011


This past weekend, my husband and I attended a ‘round-table’ discussion with the National MS Society… to have an open dialogue with the MS Society regarding what the MS Community felt was needed – and ideas on what could be done to help the community as a whole. What a good time we had!
Before we delved into the discussion, our facilitator shared a few things with the group.
First – he wanted everyone to realize that one person CAN make a difference. He shared the Free Hugs video with our group to underline this.
Second – he wanted to ensure that the entire group understood the difference between being actively involved – and actively committed to what we were doing.  He shared a story (that according to my husband is a very old one) and analogy about the ham & eggs breakfast…
the chicken is involved – but the pig was committed – giving its all for that meal.  Involvement is great – but commitment is essential.
With that – we launched into a few smaller groups to discuss what we felt was our top priorities as the  MS Community… here was our list:
1 – a CURE and remyelination! Let’s find a cure for this crappy disease & put the NMSS out of business!
2 – More Transparent Therapy Information… whether it is on alternative therapies, nutritional, exercise, holistic, sharps disposal, etc.
3 – More FAMILY recognition. Get events & support groups that can include the entire family. (In our area, none of the support groups allow children… not everyone can afford a sitter all the time – and who says this disease doesn’t impact the child(ren) of the MS patient?  Furthermore, there is not a lot of ‘caregiver’ support – emotional support or otherwise.
4 – AWARENESS & VISIBILITY. Huge.  One idea from our group was to talk the SF Giants into sponsoring/adopting the MS Society… their colors are already Orange & Black… a Perfect Fit! J
I’m likely forgetting something – but there you have it. What we want… What we’re willing to be involved in… Now – the question is – what are we willing to be committed to? And how will we achieve these wants?
Well – I’ll tell you – I’m working on and committed to #3.  My husband and I will be working with the NMSS office here in Sacramento to begin a new “support group” that is family friendly. It may be just one group in the Sacramento/Natomas area – or a second group that would meet in the Roseville area too.   You’ll know when things get moving in that direction!

01 April 2011

Gilenya, Saving, Meal Planning, and Cactus Chili... :)

Day two & three on Gilenya have been uneventful. :) That's a good thing!

I'm back at work - getting things done & planning away.

My husband is on a new kick - save, Save, SAVE... That's a good thing too! :) One way we're doing that is meal planning at home... trying new recipe ideas - so we aren't tempted (as much) to go out to eat. The other day, he made a Cactus Chili... different - but good! :) I know it is abnormal for me to share recipes here - but just this once, I figure it is okay...

Cactus Chili

• 2 – 5 lbs of pork butt or shoulder roast (this can vary - depending on how 'meaty' you want it. We used about 3 lbs.)

• 1 large can of green enchilada sauce

• 1 can of refried beans – (for thicker chili – you can use a larger can.)

• 1 jar of Nopales - Drained. (in Mexican food section of grocery store)

• 1 large sliced onion

• Salt & Pepper & Garlic to taste.

• Cumin – about 2 tsp.

Cut pork into bite size pieces & brown with salt & pepper. (Do not cook through… just brown lightly). Add pork, drippings, & all ingredients together in crockpot. Cook on low for several hours (we threw it together first thing in the morning & let it cook on low all day while we were at work.)

Serve over rice & with tortillas. Top with sour cream & chopped green onions… (If you like heat – you can also top with diced jalapenos.)

I will admit - I was extremely skeptical about this one... but it was wonderful & many in my office have enjoyed it as well. :) I hope you take a leap & try it out... you may find something new to add to your dinner menus at home too. :)

29 March 2011

Successful day one on Gilenya.

Okay... Spent the mandatory six hours at the doctors office today. Boy, that was brutal! Six long hours of near silence in a room with a long table and no windows. Internet access was sketchy. No music. Dim lights. Ugh... Reminded me of a few dreaded Saturday school sessions I had to do when I was a freshman in high school... Only the Saturday school sessions were more fun.
Took the pill about 830 and had my pulse and blood pressure taken every hour. No issues for now.

Realized how much I love my husband as he endured the long boring day with me - only taking a break from the dungeon to find me something good to eat for lunch. One other woman started Gilenya today too. Her sister came with her and complained about being bored most of the time. I considered myself lucky. I know my husband was bored too, but he never complained about it.

As I struggle with this touch screen keypad, I am sitting at my daughter karate dojo. Life has resumed its crazy schedule and tomorrow will be just like any other day...

Celebrating a successful day one on this new needle-free multiple sclerosis treatment. :)

28 March 2011


Sometimes we can get so caught up in moments of self focusing that we fail to see all of the positive things surrounding us. 

I have been so caught up in all my medical appointments and the stress surrounding the start of this new medication. Friday at work I chatted it up with a friend that recently found out her fiancee has an inoperable brain tumor. They are in the early stages of diagnosis and don't even have a firm treatment plan in place yet. How scary is that?
Now I may not know what is around the corner for me day to day, but I can only imagine what she is going through right now. To not know is so much more scary. Your mind can run a million miles a minute and for some reason human nature tends to point our minds to the worst possible scenario. The internet doesn't help much either... There is so much information that isn't always accurate and can feed our fear.

I think the most important thing anyone can do is to take time to focus on positive things especially when the stress of a situation or diagnosis begins to overwhelm and dominate our minds. For example, my friend said that this diagnosis has repaired a broken family, brought friends out of the woodwork they  didn't know they had, and forced her to focus on the truly important things.

So often we expend energy on things so petty. When faced with something truly serious we are forced to re-evaluate everything.

Maybe that is part of the silver lining of a horrible situation...

22 March 2011

Okay - so I had to share this one...

I've been pretty vocal about the start of the new medication, Gilenya.  When the doctors office called to schedule the appointment, they wanted to make 100% sure that someone would be with me the *entire* time I was there.  When I asked if it would be okay if someone dropped me off & then came back to pick me up - I was told 'absolutely not'.  I pushed - and asked 'why'?... their response - 'well, if you flat-line, we don't want you to be alone.' 

ahhh... sometimes I really don't think they realize what they are saying!

***for those of you that are concerned right now, please don't be.  I've been on this medication before... actually when I started this blog initially I was preparing to be involved in the medical trial for the medication. I was fine then - and I'll be fine now. :)***