28 October 2010

An Open Letter...

Today's post is long... likely too long for this page - but something I feel driven to share...

My post today is a copy of a letter I wrote to a would-be “miracle-cure” salesperson that bombards numerous sites with advertisements – in the hopes of making a little more ‘green’ for their pocket.

Granted, this specific letter was written nearly a year ago – but as a MS patient – it seems that no matter where I go I’m given suggestions to try this or that to make me ‘better’.  I don’t want to be told that if I just drink this rice water – or take this vegetable pill – or drink this specific juice – that all my symptoms will go away & the disease activity will cease – without some scientific proof to back it up.

Now, when the suggestions are coming from people that are close to me, well, I understand that they are doing it with only the very best of intentions & the love that flows from them makes their attempts a little more understandable.  However, as I’m sure many other MS patients would agree, the offers that come from all other sides and can be completely exhausting.

Like I said, this letter of frustration was written just over a year ago – and was in response to some very interesting bulletin board posts going back & forth between the salesperson & some questioning group members. This specific salesperson was not prepared to be questioned & got quite upset with the group for not taking the bait.

Dear 'Miracle Cure Salesperson':

I generally refrain from responding/commenting to these types of ads on discussion boards – however - after the 'holier than thou' type of response we've recently received from this salesperson when they were questioned, I could no longer keep my fingers from clicking out a bit of frustration on the keyboard in front of me.

Let me try to explain something to this salesperson. As a MS patient myself - after diagnosis I scoured the Internet for any information on various treatment options I could find.

There is a LOT of information floating around the Internet on miracle cures – between diets, treatments such as the one you are touting, and "amazing" detoxification methods that will supposedly ‘cure’ multiple sclerosis.

While it may be somewhat exciting and offer some much needed hope for people that live with this disease – I have to be honest and say that some of the things these people (such as yourself) are touting are really quite scary and offers a very false sense of hope and expectation.

I can assure you, dear salesperson, that if any one of the people selling these ‘miracle cures’ (including you) actually had a true and viable cure for this disease – it would have a whole lot more attention than an occasional blip on an internet search engine of your postings on various internet blogs/pages/bulletin boards.

Quite honestly (if you can’t tell already) these people completely disgust me.

Salesperson - I imagine that you must have some level of belief in the product you tout - but you must understand how completely tired people with MS are from hearing about "the next amazing cure." So many people have been bombarded with these claims that "if you just spend X amount on my product you will be cured" - that is almost as insulting as saying "if you just had enough faith you would be cured" or telling me that "if you had just eaten more veggies when you were little you would never have been plagued with this disease."

I have a hard time believing that you've never met such an angry response. Maybe that is because other sites have just had your postings deleted & your userid to their site blocked immediately. In a way - I'm glad that you are actually receiving some honest angry responses from people that are just sick and tired of hearing claims similar to yours.

So in conclusion salesperson - let me just say that I didn't join this group to hear about a "miracle cure" - but with the hopes of connecting with others that understand exactly what I go through on a daily basis. You clearly don't fit that bill as you have absolutely no connection with this disease and in all appearances are attempting to take advantage of people that are desperately seeking a cure for this currently incurable disease.

I generally close emails with good will wishes - but as long as you are in the business of touting/selling your so-called miracle cure, I have absolutely no good will wishes for you right now. It is hard to find any good will wishes for someone that doesn't see the person with the disease but just the money they can make off of that person - touting a "miracle cure."


Yep – I was angry when I wrote that letter.

25 October 2010

MS & Meds

I have MS... (warning - grouchy day post!)

Seems that when I was first diagnosed with MS I was all gung-ho with anything & everything I could do to combat it.

I was following the strictest diet, taking just about every vitamin anyone would suggest, on the injection medication, receiving steroid infusions at the first sign of a relapse, taking pills to help with the wonderful acne-type side effects you can get from the steroids, another to ease the nausea, more pills to help me sleep, one to help me stay awake, and others to combat the pain... this list could go on and on and on.

It's like this vicious game of intertwining drugs & their various side-effects/reactions... where does it end?

Sometimes I have to wonder - what's the point? If I am on one medication specifically for MS - but I feel like crap from the side effects & have to take 15 other pills to try to balance that out - which one (MS or Meds) is doing my body more harm?

I'm at the point right now where I'm tired of supporting the various drug companies & pharmecutical representatives. The CARB drug manufacturers will tell you that their medication isn't a cure - but only that it may lessen the impacts of outward relapses or possibly slow the disease progression slightly

I just want something that works... something that doesn't require needles - and doesn't come with a cabinet full of other medications.

I just want to be able to be a mom to my kids, a girlfriend to my husband, and a great secretary for my boss. 

I don't want to have to spend more money on medications than some families spend on groceries.

Is that too much to ask?

22 October 2010

Exhausted. Jumbled.

What a jumbled week this seems to have been... It has flown by so quickly - yet Monday seems like a really - really long time ago!  So - I thought I'd recap a bit here & maybe I can figure out where I got mixed up...

Monday -
I worked in the morning - met Erin (my friend that works for NMSS here in Sacramento) for lunch - then headed to the Sutter Roseville hospital for my steroid infusion (that makes me feel like crap). Hurried home after that to meet with two physical therapy students from Sac State for their 'in-home' visit & showed them how I move around in the apartment... after that - tried to prep dinner while my husband was at Karate with the girls - only to find out that our chest freezer was turned off(!) so I had to empty it out & try to save and cook as much from it as I could (let's see - 4 boxes of taquitos & 2 boxes of popcorn shrimp, two whole chickens, breakfast sausage, smoked sausage links, etc.).  exhausted. *sigh* did I say steroids make me feel like crap?

Tuesday -
still reeling from the steroids but back at the office dark & early. Worked all day preparing for meetings & events taking place the next day. Lots of computer reporting, emailing, phone calling, etc... then met with two wonderful ladies for an after work planning session organizing the Folsom Walk MS event taking place in April. Home late but in time to tuck my kiddos into bed & exhausted crash into bed myself.

Wednesday -
day one of the meetings... in the office making last minute adjustments to presentations, plus printing reports and handouts. Then it was off to the hotel/meeting site for setup & meeting kickoff.  Work from the hotel lobby while waiting for the caterer to set up & squeezing in the last minute guys that didn't initially reply about staying the night at the hotel. Took a lunch break to meet with a friend that is moving away (sad). Touched base with the restaurant and transportation company regarding their dinner that night & tried to get home at a decent time. Visited in the evening with our friend again and along with the rest of my family said our goodbyes. exhausted.

Thursday -
back & forth from the office to the hotel in the morning for the last portion of the meetings... had to meet with another trainer to finalize more meeting arrangements for next week. Ended up running late & had to get my oldest daughter dropped off at karate - then hi-tail it to the preschool to pick up the little one & get her back to the dojo for karate class on time too.  Finally home about 5:30 & exhausted...

Friday -
today - drop little one at preschool & in to the office before 7.  One meeting outside of the office this morning & then back to the grind prepping for next weeks meeting.  Still have to make it through the day & figure out what to make for dinner.  still exhausted.

My brain is a jumbled mess & I'm having troubles focusing on one thing for very long - in fact - I'm surprised I got this written!  So - before my jumbled brain starts to hurt, I'll sign off... with two words which seem to sum up my entire week thus far:




19 October 2010


Ask anyone anywhere & they can likely tell you that October is not only Halloween for the kiddos – but Breast Cancer Awareness month… how can you miss it, right? – with all the pink inundating us nearly everywhere we go. I bet even little tykes could tell you that October colors are ‘orange, black, and pink’!

My 11 year old daughter notices this & has asked me why MS doesn’t get as much attention as breast cancer or MDA or even HIV/AIDS. “It’s not fair!” she says. This is something that frustrates me a lot as well & I had to really think about the answer to her question.

The diseases that seem to get the most public attention are the ones that have somewhat of a more defined disease progression/course. As crappy as that is – we all know that is pretty darn true. There’s a set disease progression/path. There’s a set & consistent treatment plan. There is more publically ‘known’ than ‘unknown’. Don’t get me wrong – they are serious & deserve a cure… but so do we!

I honestly think it is because no one likes the unknown. It’s human nature. And for the majority of society – MS is a big ‘unknown’.

I’ve decided that MS is too much like playing the slots. As someone with MS – one day we can hit the jackpot – be up and moving around like anyone else. The next morning, we’ve lost big-time – our legs may decide not to work – or our eye sight will crap out on us. This can last a few days – to a few weeks – or longer. If we’re lucky we again hit the jackpot! and we’re back to moving around like anyone else once more.

As much as I find that the silver lining so far within this disease – I also find it to be one of the hurdles when raising awareness. Because there are so many ups & downs like that – in such big arcs – way too many people mistake that for something as simple as ‘lazy days’. That’s where I think we as a community of individuals facing this disease need to band together even more.

Moms are a powerful force. We all know that’s true. (Show me one Mom that will sit by & watch something harmful happen to a child if she has the power to stop/prevent it.) So – first as Moms – we group together on the site – http://www.momswithms.com/  We support, uplift, and encourage each other. We provide a place where Moms can come ask those questions that they might not otherwise not ask if they were in mixed company – and they can receive feedback from someone that understands only like another mother can. The site can give other Moms strength to go out and educate others though too.

So who knows… maybe in the next year or two – we’ll see banners inundating our local businesses for MS Awareness month… wouldn’t that be great?! That’s my goal. That’s why I share my stories – my thoughts – my path – with others. I’m pretty much an open book when it comes to my disease path so far – and it is all with the intention and desire of raising awareness… taking out as many of the questions marks as possible.

If you are a Mom with MS - I hope you come & join us in that wonderful community… If you’re a do – I can attest – you’ll find something/someone helpful there too.



18 October 2010

Metal Mouth

When you were a kid, did you ever put a piece of something metallic in your mouth? That wonderful metallic taste is the flavor that wipes out everything else for me when I have my solu-medrol treatments.

Solu-medrol is an intravenous steroid that is supposed to help keep the MS inflammation at bay & is frequently prescribed to help shorten the length of time a person is impacted by a relapse.

Today I am sitting at the infusion center – with the IV tubing sticking out of my hand & wishing I still had the taste of the eggplant I ate for lunch – as opposed to this wonderful metallic flavor I will now enjoy for the next day or so.

While I hate the taste - I keep hoping that this drug will work & keep the disease at bay... :)

17 October 2010

My MS Story - Revisited

You know that tingling feeling your feet have after they've fallen asleep and start to wake up again? Imagine living with that all day - every day. I do.

Imagine sitting at your computer - and all the sudden you can't see a thing. Everything is complete fuzz and very, very dark - and you don't know why. I will tell you first hand - it's excruciatingly scary.

I was annoyed/scared enough to see my family doctor (John Doolittle - no jokes please). He is absolutely the best I've ever experienced. Completely unwilling to let things slide and a memory like an elephant! Based on this episode and other things I'd talked to him in the past - he was the first person to utter those words to me: "I think you may have multiple sclerosis."

Those words hit me like a ton of bricks. I did anything and everything I could to pretend they'd never been said. Ignored his requests to send me for more tests. Until this happened:

Imagine walking in to a room and finding the person you love on the floor - unconscious. I can't imagine what that moment was like for Randy (my husband), but that is what happened.

Obviously - these events turned into a lot of doctor appointments and more ‘suggestions’ that I might have MS. I wasn’t ready or willing to accept their “diagnosis” – so I ignored it somewhat successfully for 2 more years… until I started work for my current employer… In their attempt to add me to their drivers insurance, for the rare days I might have to drive a company vehicle, I found out that the neurologist I met with after my fainting spell actually requested the DMV put a medical suspension on my license… In order to have this removed, I had to be cleared by my doctor and another neurologist!

This led to my introduction to neurologist Dr. William Au. After multiple MRI's and one horrific spinal-tap, I was officially/formally diagnosed with MS in July 2005.

Randy and I met with Dr. Au and had a lot of our questions answered. We were given information on the various treatment options and told that we should decide if we wanted any more children before a treatment plan was started. (I know now that was pretty bogus information – but that’s another story.)

After a lot of thought, we decided that we were content with our family and I began a Rebif treatment regimen that September... only to find out three weeks later (SURPRISE) that I was pregnant!

Obviously - I had to stop treatment at that point until after the pregnancy.

After Heaven was born (May 2006), I joined on to a medical trial through UC Davis. The trial was looking into an oral medication (as opposed to injections). Unfortunately, after being involved in the trial for just under a year, I was ineligible to continue due to other complications and a low heart rate. [Looking back, even the UC doctors believe I was on the high dose of the medication (it’s the low dose that was approved & released to market). Plus – right around the time I got ‘kicked off’ – there was an incredible amount of stress in my life that alone could wipe out even the healthiest of people… so I blame my dismissal on that.]

I then began taking Avonex. Once a week Randy would give me the injections. I really am thankful for him... if I was left to give myself the injections - well - let's just say that it wouldn't happen. A few years & a new neurologist later - I’m still having relapses – so the Avonex isn’t working as well as we’d like… I’m currently off any of the CARB drugs & waiting (rather impatiently) for my insurance to approve the oral medication that’s been released to market. In the meantime, I’m going in once a month for IV-steroid treatment in an attempt to keep relapse symptoms at bay.

People ask me - how the MS affects my life - what symptoms I experience. The biggest (and most annoying) - Fatigue! This is the one that I hate the most. It has the biggest impact on my children and our family activities. Ugh! I can't tell you how often I'm tired of being tired!

The other main symptom I deal with daily is a major loss of sensation & strength in my left arm and leg. Let me tell you – this is pretty annoying… imagine your husband coming up – he caresses your arm or sits next to you & rests his hand on your thigh – and you can’t feel a darn thing… *GRRR* - kinda puts a damper on the intimacy sometimes. And again - *GRRR!*

There have been good days and bad days. Thankfully, the good still outnumber the bad! I sit back & take stock of my life & realize that I’m truly thankful for what I do have – what I can feel… so – I’ll fight. I’ll share. I’ll do what I can to empower others with this disease. I’ll find a work-around when tasks become difficult.

And most of all – I’ll live my life – not allowing MS to define who I am.

14 October 2010

11! YIKES!

My daughter, Jessica, turns 11 years old today. 

Wow - I can't believe how fast the time has flown by.

So today - my blog post is dedicated to her...

Happy Birthday Jessica.  You're one of the big reasons I fight every day to be stronger - to be better. I love you with all my heart.

13 October 2010

Spin Me Right Round...

You spin me right round, baby, right round -
            like a record baby, right round round round.
You spin me right round, baby, right round -
                          like a record baby, right round round round.

In the 80s - Dead or Alive lit up the radio with that song. Last night I think I lit up the other diners at a local BBQ joint with my 'literal translation.'

I'll explain...

I was completely fine all day. Ate breakfast & lunch - worked all day - picked my kids up & took them to their martial arts class... a normal day. Sitting at the table at a local BBQ joint - because I forgot to start the crockpot that morning - I was joking around with my family & munching on my daughters french fries while I waited for my food to arrive.

Out of the blue - the entire resturaunt start spinning & I couldn't even sit up straight. If my husband wasn't sitting next to me - I'm sure I would have crashed onto the floor - because I sure crashed into him with considerable force. My hands couldn't find the edge/corner of the table to hole myself steady & my mouth couldn't find the straw of the cup right in front of me. Darkness started to creep in on the edges of my vision & I instantly started sweating along with waves of nausea that rolled over me stronger than I've ever experienced before. My head went down on the table & I tried to will myself to balance.

It took about 20 minutes (although it seemed like hours) before the world stopped spinning. My kids were freaked out & my husband had stress written all over his face. Then the waves of guilt began. I looked around & realized how many people were staring & how uncomfortable this whole 'spinning ride' had created. Ugh.

The worst part - I still had to drive home! My husband and I had met up at the dojo after he got off work - so we had two cars out. I made both my kids ride in the truck with him & he followed me home. I don't remember the drive - but I know that I'm here now & the car is in one piece - so it must have been okay.

I've never experienced anything like that before - and hope I never do again.

Today - well I'm moving a bit slower. My foot drop is back, my head throbs and twinges of dizziness still linger. I'm determined to make it through the day though. I have too much on my plate to creep out too early... not to mention a boss that is returning to town this afternoon after being gone for nearly 2 weeks. So - I'll do my best to make it through today & keep my fingers crossed that my world stops spinning once again.

12 October 2010

"The Look"

There's certain 'Looks' that only people with an invisible illness such as MS are familiar with. Co-workers or friends or even family that is aware of the diagnosis have all taken part in sharing (albiet unwittingly) "The Look" with me. It's one of the things I detest the most about people knowing about my MS.

Now - this look comes in many different forms, right? For me, well there is the one that reeks of pity - the one that tells you they think you're putting on an act for attention - the look of guilt - and the one where people choose not to see you anymore.

None of them are easy to deal with.

The people I love the most in this world rule the "guilt look" unlike anything I've ever seen before. Lord forbid I have a relapse - or share with them when I'm having a difficult moment... that's the apparent 'green light' for them to paste this look on their face & in their eyes... makes me wish that I could snap a picture of that look & let them know it actually makes me feel like *not* sharing anything with them sometimes. I know they mean nothing mean-spirited by it - and likely have no idea how it is read - but its there nonetheless.

Co-Workers, on the other hand, are split into a few different groups. The core group I work with face to face on a nearly daily basis - they've accepted my disease & have been amazing... the ones on the outside of this core group - that are located in different offices I only have to visit once in a while - well those are the ones that either give me the pity look or the look that says "whatever - she's just looking for attention."

I wonder - what 'looks' others with an invisible illness get - and what they say? I'm sure there are more out there than the four I mentioned...

Don't get me wrong - there are good 'looks' too... Like the ones from my kids that say "I love you" even when I'm having a bad MS day.
The look that hurts the worst though - is the look from someone I truly believed was one of those 'thick or thin' kind of friends - who now chooses to look right through me & act like I don't exist. Part of me understands - that dealing with this disease & accepting it is hard sometimes - and they just aren't really sure what to say or how to deal with it...

11 October 2010

Haunted House

This week many communities are opening haunted houses for the Halloween season. One of my friends was going on and on about how much they enjoy the fright of turning that next corner & not knowing what will come up & scare the crud out of them. When asked if I was interested in getting tickets to go – I declined – as I’m not one that enjoys almost messing my pants from fright…(I didn’t tell them I have enough of the almost peeing my pants anyway…)

I’m sitting here at my desk & pondering the conversation we continued to have about past Haunted Houses they have toured & all the various frights they’ve endured with pride. My friend described lights blinking on & off with fog filling the air making it difficult to see – then something reaching out & grabbing them as they walk through darkened halls – with floors beneath their feet shaking & dropping a few inches causing them to lose their balance – only to be covered with lifelike spiders and the fake spider webs that makes her skin crawl. On and on she described all the horrors of not knowing what will happen next and the total relief when they reach the end of the path and know they are safe.

Then it hit me.

MS is like a haunted house.

The difference is – for us with MS, as of right now there is no ‘end’ (aka cure) to this path we’re on… at least, not yet.

Each day we wake up – not knowing what is around that next corner. Sometimes we get the crap scared out of us – when all of the sudden our vision goes screwy & we can’t even see our hand clearly in front of our faces. We may experience the pain of the MS Hug as they call it. Or – with no notice, our legs give out & we fall (which in-turn can become relief when we find out nothing was broken). Or – the tingles/itches that so many of us experience.

For those of us with MS, we live in a variable haunted house every day. We don’t know what may be around the corner for us… it may be a room that is completely calm with still waters & it may be a room where our legs don’t seem to hold us up like the should.

No – I don’t think I need to take the ‘Haunted House’ tour this Halloween – but I will keep trudging through my own Haunted House of MS – hoping and praying that the ‘end’ (cure) will arrive soon & fill us all with the relief we so much deserve.



From the mouths of children

My daughter Jessica - who prefers to be called Jessi - asked me this past weekend if she could write an article for my blog...  A short time later, she came to me with this:

Having a mom with MS is tough.

You never know what is going to happen to them.

For example, mom will say ‘you can have a sleepover – if I’m feeling ok. But next thing you know, mom is saying she can’t breathe that good.

Also it puts you down. I go to middle school, but no matter how much fun I have, I always worry about her.

Plus I can’t imagine having no cure for a horrible disease. It’s not like cancer where it hits everyone the same – MS hits everyone differently.

I just hope all the people with MS will do ok… especially mom.

I'm a lucky mom - to have a daughter so amazing. She turns 11 this week - and I can't believe how quickly time has flown by.  I love you Jessica Lynae. You're a great daughter.

10 October 2010


Funny - that one word can make such a huge difference in our lives.

Acceptance of the diagnosis is something I’ve been yo-yoing around with for the last 9 years. Somehow though - I have to wonder if I’ve ever truly accepted it. I was formally diagnosed with RRMS just over 5 years ago.

Does having RRMS make it a bit harder to accept? I say that because there are times in between relapses that I don’t even think about it & how my world may need to / has needed to change. On the flip-side of that – give me a bad MS day – and watch out! The tears are flowing, the anger is building, and although I received the diagnosis quite some time ago, it’s like I was just told for the first time all over again. The fear of the unknown.

I think (and hope) that I’m getting better with the whole acceptance thing. I’ve been open & honest with just about everyone with my diagnosis – maybe everyone but myself. I adamantly refuse to allow MS to rule my world – and for the most part I do pretty darn good at that… but it’s those brief moments of defeat – when I know that a side effect / symptom of this windy curvy life path we’re on has caused me to stumble that make me question myself.

Have I actually dealt with and accepted the diagnosis?

Which brings up even more questions – If I haven’t, do I even want to? If I fully give acceptance to this diagnosis – does that mean I’ve given in or given up? That’s a mental battle I fight quite often.

Then I step back & look at it – I believe one thing… I have accepted that I have a war to fight.

So – maybe that is what acceptance of this diagnosis is all about… I could accept & give in. I could accept & give up. Or I can accept & turn it into a battle cry.

That said - the war has started & the fight is on! :)