Be Careful What You Ask For

I can remember being told – “Be careful what you ask for…” The biggest example I was given – was with Patience… when you pray for patience, well – you’re put to the fire & tested… and at the end of it – hopefully you learned that you have to have patience in many situations. Well – I never wanted to go through the fire & testing – so I’ve never actually prayed for patience… that doesn’t mean that I never went through some trials – but – I never went specifically in search of learning/obtaining more patience. (My children can attest to that!) But – I’m getting away from my intended subject matter…



I write this specifically in regards to my life with multiple sclerosis. In the summer of 2010 – I went through a period of time where I literally could not feel my left leg – at all. It was there – it just didn’t register. I recall one neurologist at a university - that may not of completely believed me – who actually drew blood by poking my foot with a safety pin needle… Anyway – I remember whispering thoughts, prayers, and wishes – that I could feel my left side again. It was truly troubling to me that I couldn’t feel the touch of my children – or my husband – and I longed for sensation to return. Well – my prayers/wishes were answered… I can feel my left side now – but I feel everything wrapped in a thick layer of pain. It’s a pain the most OTC pain relievers can’t touch… you see it’s still related to the MS & some pesky misfiring nerves.


Moral of the story: I just need to be a bit more specific when I send up those whispered prayers… “please let me feel again – the true sensation of touch & control – without the caveat of a layer of pain.”


We’re working on finding the right medication to help alleviate the nerve miscommunication – but in the mean time when people say “It’s all in your head” – well – I just have to agree. 

Frustration

Okay - so I disappeared again for a while...  The holiday season (I consider that to be Halloween through Valentines Day) has been exhausting. 

Today I'm taking some time to catch up on the things that are important to me.  (warm & fuzzy, I know)

Anway - I'll jump into things... I'll admit that my MS has progressed some this last year... the relapse I had in June still likes to rear its ugly head & remind me that it's not completely gone & I better get used to it being with me off and on. A few new symptoms are appearing - one that I call my 'brain-pain'... which just means I'm experiencing pain for no apparent reason - and I can't explain it and none of the OTC pain killers have done a thing... thus the name 'brain-pain'... I think it sounds better than just saying it's all in my head...

My medical experiences the last two months have been horrible for some reason... let me share:

I had a MRI mid-December - and was instructed (for the first time ever) to completely disrobe...  Are you kidding me?!?!?!  It's not my first time at the rodeo - and it was my brain they were taking pictures of. I don't wear bejewelled jeans - or jeans with a million zippers & metal studs.  I  wore a sports bra - a sweatshirt - jeans - socks & tennis shoes.  In all my prior MRIs - I have been asked to remove my shoes - but never been asked to take all my clothes off.  When I questioned the technician on this, I was treated so rudely I was stunned.  I was tossed a gown & told to change.  What choice did I have - I needed to get this completed before my next appointment. I changed as 'ordered' - but refused to remove my bra & put my sweatshirt over their 'gown'.  Then while I waited - I heard the technicians talking about "the patient that refuses to change because she thinks she knows more" than they do. Ugh.

Fast forward a few weeks - and its time to meet with a neurologist to review the results & put together an action plan for going forward. My regular neurolgist is out on maternity leave - so I needed to meet with with her colleague.  I have *never* in my life experienced such a useless & disappointing medical appointment... if it was any other service - I would have asked for my money back!  The doctor came in the room - did a brief exam - told me my MRI had "countless lesions".  He asked what medication I was taking - and I told him I wasn't taking anything - because I was waiting for the new oral treatment to become available - which it was at the time of the appointment & I'd like to get started on that as soon as possible. His response - "well, you're a good candidate for that and I'm signed up to perscribe it, but I don't want a patient sitting around in my office for 6 hours for observation and that is what is required for that medication... just come back as soon as your regular doctor is back - she'll be back the first of February." With that - he left the room.  Less than 5 minutes of face time - and not once did this doctor even look me in the eye when he spoke with me.  I wanted to shout at him "Am I wasting your time? What kind of doctor are you?"

So - here I sit - and wait - for my doctor to come back from maternity leave.  Still on no meds - still in pain.  Completely disappointed that there are doctors out there that make the money they do while being completely useless to the patient sitting in front of them.

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."

~Kristie

Yep – I was angry when I wrote that letter.

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?

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:

Exhausted.

Jumbled.

Always,
~Kristie

October

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.

Always,

~Kristie

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... :)

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.

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.

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.

"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...

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.

Always,

Kristie

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.

Acceptance

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! :)

2010 Walk MS Kick-off Event

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 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.

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. I am currently taking Avonex. Once a week Randy gives me the injection. 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.

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. Like anything else, there have been good days and bad days. Thankfully - so far, the good outnumber the bad!

Ultimately, I have never been successful in describing exactly what it is like to live with Multiple Sclerosis. There are days that seem to be a self-contained rollercoaster – and there are days that I am almost able to go into a full case of denial because everything seems to be going so well.

I came across an article last year called The Spoon Theory. While the author suffers from Lupus, as opposed to MS, she has succeeded in describing what I have not been able to express. From her description of a daily battle with fatigue - to the oddly difficult decisions that have to be made - ring true. Most of the things that many people take for granted. Use the link to visit and read The Spoon Theory. It really is wonderful reading! http://www.butyoudontlooksick.com/the_spoon_theory

Please consider joining / sponsoring me in Walk MS. The walk is a wonderful event that helps to raise awareness and funds for the fight against multiple sclerosis. Because of generosity and support from people like you, the National MS Society is moving one step closer to a world free of this disease. Thanks again for all your support and helping to bring an end to multiple sclerosis.

I wish you a 2010 full of unlimited spoons!

WAKE UP!

I know that sometimes you can sleep wrong - and wake up with a numb arm / hand, leg, etc...

Well - I woke up this morning with my right arm numb/asleep from the elbow down through my fingers... mainly on just the outside... meaning that the inside of the arm from the crook of the elbow through my thumb seems fine... but I can't feel the other four fingers, and most of the hand... very weird...

I thought it would go away after a while - but here I am almost 10 hours later and it is still 'sleeping soundly' if you know what I mean... COME ON!!! WAKE UP ALREADY!

So far today I've managed to drop two cups of coffee, scattered a pile of mail in the hallway that I was trying to carry & sort at the same time, and learned that - while possible - it is extremely difficult to button a pair of jeans with my left hand! UGH!!!

Now I wonder at what point does something like this become an issue that might be considered a 'slight relapse' or 'symptom'? Already living life with a major loss of sensation on the entire left side of my body... I'm not sure I could handle it on both sides!

Balancing Acts

Life is already a pretty crazy balancing act… We try to do as much as possible – and sometimes end up with too many things to balance effectively…

You know how when you try to carry too much laundry at once – and inevitably there are at least two or three socks that don’t seem to make it down the hallway to the washroom? My thought is that life is a lot like that… At least – that’s what my life feels like right now. Between home, work, doctor appointments, and karate classes for our daughter, I have the feeling that I am losing my grip on a load that has become quite heavy. So – now it is time that I have to make a decision… do I take a purposed step to reevaluate all the items I am attempting to juggle & purposely set one down? or - do I continue onward and just hope and pray that I make it through without dropping everything?

Every time I speak with a support nurse, and she asks me to outline a typical week – her immediate question is ‘are you trying to make yourself worse & trying to provoke a relapse?’ I am not ever sure how to answer that one… I definitely wasn’t sure how to answer that one today! Is that what I’m trying to do? I wouldn’t think so. Maybe - in some way - I am afraid of stopping. I don’t want to stop – and then be in a position where I can’t get started again… does that make sense? I am afraid of being in a position where I have to actually admit that I am unable / incapable of doing everything… that’s not me.

So where do I draw the line – you know that proverbial line in the sand that says anything that is beyond this line is okay to let go of for now – but everything else needs to be maintained with priority? Furthermore, once that line is drawn, how do we know what goes on either side of that line?

I’m worn out. I’m tired. I’m disappointed… but I have a decision to make – and I’m being told that it’s well past time that the decision is made – so – hopefully I’ll make the right one.

Kick-Butt Karate

So, my oldest daughter has started Karate class & LOVES it. I'm hoping that it will help instill in her the morals/values that we are working on... Here's just a snipped from her 2nd week in class! :)

Yeah - I know it's way off subject - but its still fun to share!

UC Davis Trial UPDATE

I received a call from the University end of last week - stating that they wanted me to come in early and start on the medication for the trial. So - Monday night was a sleepless night - tossing and turning - fighting back the anxiety of Tuesday's dosing day at the University... Tuesday would be the day that I would find out what medication I had been assigned to for the trial. Tuesday would be the day I would find out if I would be faced with daily injections for the next two years - or be assigned one of the oral treatment options.

Randy, thankfully, took the day to come with me so I wouldn't be alone. I went through all the testing once again & then the coordinator left the room to call in to find out what medication I would be assigned... as she left - I jokingly told her not to come back if there were needles involved with her return!

About 15 minutes later, she returned - and to my delight - it was with news that I had been assigned to one of the oral options. (YEAH!!!)

Next Trial Appointment

Tomorrow I play the Guinea Pig role once again... but it shouldn't be too bad. I have a MRI scheduled at the University in the morning, followed by a round of MSFC testing...

The MSFC testing is composed of a few things:

• two short 'timed' walks (I guess its just to make sure I can walk unassisted without completely tripping over myself).
• a peg board test... a series of 9 holes and 9 pegs. I have to pick up the pegs one-by-one and insert them into one of the holes - and then remove them all one-by-one... first with the left hand only twice, and then with the right hand only twice.
• a vision test... this one is a little weird.. the first screen is at 100% with bold black type. The second screen is at 50% with much lighter type. The final screen is at 20% I think - man that one is really hard! The type appears as barely a shadow on the page... (even my husband that doesn't have MS has a hard time seeing that one... he blames it on glare... :) )
• The last part is my least favorite part... it is a type of mental math test. a voice on the machine says a different number every 3 seconds... I have to add the last two numbers the voice said together... so for example, the numbers said could be "1"...(3 second pause)... "8"...(3 second pause & I have to answer '9')... "4" ... (3 second pause & I have to answer '12')... See what I mean... after 5 minutes of that a person just goes loopy!

Well - wish me luck... almost an hour in that MRI machine can drive me crazy - it is very very hard for me to hold my body still for that long! Hopefully I have a great tech that will actually listen to me & how I function best during those exams... if not - it could be a very very long day! My husband is going with me tomorrow - so at least I won't be alone. I'm so very lucky to have a guy as great as he!

Catching Up

Okay – no excuses from me this time around… I need to get back in the habit of posting something here again. Well – let me fill you in on the happenings since my last post on April 22nd.

The walk was on April 25th, in Roseville / Rocklin. We had a GREAT time and amazing weather that day. My mom flew down from Oregon too. In the picture (from left to right) are my husband, me, Christina “Nanny Nina”, my mom and in front, the little on is my daughter Heaven. My oldest daughter was at play rehearsal and wasn’t able to make it. My team ended up raising just over $1,300! Not an exorbitant amount, but every dollar puts us one step closer to a cure! So – THANK YOU THANK YOU THANK YOU THANK YOU!!!!

I have also received final approval to join in a new medical trial through UC Davis. This one is called the Confirm Study. I will find out on June 16th which medication I will be on. I have a one in four chance of being on Copaxone – which is a daily shot. The other three options are oral pills… a high-dose medication, a low-dose medication, and a placebo (sugar pill). I’m hoping for the high or low dose oral pill – since I’m doing this with the hopes of not having to deal with shots at all - so keep your fingers crossed for me!

In other news – have you seen some of the amazing stuff being done so far with stem cell research?!?!?!?! How exciting is that? My favorite one so far is the news that they have been successful in extracting stem-cells from the patients fat-cells! SIGN ME UP!!! Sounds like a great two-in one deal!

Speaking about MS

This Saturday is the MS Walk in Roseville/Rocklin, CA - and I have been asked to speak to the group of walkers & volunteers that day. I'm at a complete loss. I have only been diagnosed about 4 years - I haven't raised an exorbantant amount of money for research - I just continue to live my life...

I only have to speak for a few minutes - but really I'm just not sure what direction to go with that.

We're all gathering together with a common purpose - to raise awareness of and funds for research - in the hopes of finding better treatments - and a cure for this crazy disease that has touched all of us. While the disease touches each of us in a different way - it has brought us all together - in a new kind of family. A family of support - encouragement - and most important of all - hope. Hope that this stupid disease will soon be something only read about in some obscure medical history journal. I'm supposed to be there to encourage these people in some way - but ultimately - I believe that I just may be the one most encouraged by the many people coming together to stand up against Multiple Sclerosis.

Any suggestions/guidance would be so very much appreciated.

Thanks!!!!!

Kristie

Updates

First - I have to apologize for not posting any updates for such a long time. Life has a way of seeming to fly by when we least expect it!

I've received notification from the University that my first appointment will be toward the end of the first week of May. I cannot tell you how much I am looking forward to that. I am very excited about the possibilities & count entering this trial as a huge blessing.


In just 8 short days (April 25th) I will be at the Rocklin Walk MS Event. My mom is flying down from Portland to walk with me - and Randy has arranged to take that day off from work too. Jessica (my 9 year old) has 'play practice'/'dress rehearsal' for the big production at school, so she won't be able to join us on the walk next weekend. She's asked to be able to walk the route this weekend though - so I think we just might do that. That's one way to get out of the house!


So many of you have sent in your well wishes and many of you have donated to the walk. To all of you - I send my many thanks!


Did you know that for every $1.00 raised for Walk MS, $0.78 goes toward research, programs and education? (The remaining $0.22 is invested back in to the society for future fundraisers or to cover administrative costs.)

Lab Rat Update

Well, I signed all the consent paperwork yesterday at UCDavis for the CONFIRM study. I'm really excited about the possibilities. The drug being used in this trial is actually a reformulation of a drug that is currently FDA approved for psoriasis treatment... so at least this isn't a completely new study drug with so many unknowns as some of the others currently in trials.

I now begin a 'wash-out' phase - - - which means I'm off all MS meds for the next two months. After that, I'll go in for an official 'screening' visit which will be followed by the baseline appointment. After that, it's one visit a month. Most visits will take less than an hour - and one appointment every three months will take a majority of the day.

There's no monetary compensation for the study - at least not in the form of receiving a check. However - if you look at it in the form of the savings on all the doctor visits (my co-pay is normally $15/each), plus the savings on the MRI's (my co-pay is about $300), plus the savings on the medications (my co-pay is about $100/order), plus the savings from all the various lab-work (my co-pay is 20%)... well let's just say that adds up to a pretty significant compensation package!

Some of my family/friends have raised concerns about the possibility that I'll be assigned the placebo drug. My response to that is if I am assigned to the placebo group, there is no other environment where I'd be better monitored. Monthly exams and lab work and MRIs every 6 months will keep a close eye on any disease progression. So - I'm okay with being a lab rat!

Moving is...

Here is the message of the day from WALK MS in Northern California:

Moving is universal.

Moving is essential.

Moving is expressive.

Moving is defiant.

Moving is natural.

Multiple sclerosis stops people from moving.Your support of the 2009 Walk MS ensures that it doesn't.

Walk MS is more than just a walk. It's a rallying cry uniting those living with MS and all who care about them. Walk MS promises to raise $1.6 million in 2009 to fund local programs and services for 87,500 people whose lives are touched by MS. The Society invests almost $50 million annually to fuel the efforts of hundreds of researchers throughout the U.S. and abroad. That investment is paying off in significant advances toward finding improved treatments as well as better diagnoses, rehabilitation and symptom therapy.

Thank you to everyone that has been able to offer support & sponsorship thus far for the 2009 Walk. If you haven't yet had an opportunity to do so & would like to make a tax-deductible donation to the MS Society & sponsor my team in this years walk, please use the link on the side of the page to Donate to the 2009 Walk MS.

THANK YOU EVERYONE! Your support is invaluable.

~Kristie

Lab Rat Potential?

Well - I mentioned in a previous post that I was hoping to become a lab rat once again. This afternoon I will be able to take one step closer to my goal! I received a call from the study coordianator at UCDavis yesterday and I am scheduled to meet with her today to sign 'consent' paperwork. I'll update everyone with the status after the appointment today.

Until next time,

Kristie

Fatigue

No – I’m not talking about the style of clothing our soldiers wear – I’m talking about being just plain worn out! One of the unpleasant symptoms of MS is fatigue. Not the “I’ve worked my butt off in the yard all day” – but the kind of fatigue where even your brain feels worn out.

Ugh. Try explaining that to two young kids! It’s hard when people just assume you’re lazy – or that you just don’t care about what’s going on.

Well – I had an appointment with my neurologist on Wednesday and she gave me some samples of a medication called ProVigil that is approved and supposed to help MS patients with fatigue symptoms. Yesterday I decided to take just a ½ dose. Wow – that stuff just knocked me on my butt! I think it had the exact opposite effect than intended. I was just sorta out of it for a majority of the day after that.

To be fair, I can’t say 100% that it was the medication that caused me to feel so icky yesterday – but taking that ½ pill was the only thing I did differently yesterday morning. Maybe I’ll just up my coffee/caffeine intake next time. Not only will it taste better, but I don’t think I’ll get so strung out either! :)

Strive to be a Lab Rat?

I have never known anyone to say that they have an immediate/near future goal of becoming a lab rat... have you? Okay, well if you're reading this, then I guess you can say that you have now because that's my immediate/near future goal.

I spoke with the UCDavis Neurology Department about some of their current trials. (Read the post from March 20th.) There is one that I may be eligible for. Here's the kicker though...

This trial has a possible 4 treatment plans the patient can be put on. Three are pills - high dose, low dose, and no dose. The fourth option is Copaxone... that would mean one shot in the arm/leg/stomach (etc) every day. (Ugh.... can you hear me groan over the internet?) That means I would have a one in four chance of being stuck on the injectible drug... but on the bright side there is a three in four chance that I would receive the oral medication.

Why would I try for that? Hmm... let's see... all medications would be paid in full... all medical visits would be paid in full... My MS would be more closely monitored than in traditional treatment environments... We'd be one step closer to having a treatment available to the market that did not require injections or infusion therapies... Hey - did I say it was paid in full? :) I can't tell you how huge that is.

I passed the pre-screen. The study coordinator is sending me a packet to take a look at. If it appears that they will accept me into the study, I would have to go off the Avonex for two months before my first visit. That part of it may be a small crap shoot - but do you really think I'm going to complain about not being stuck in the arm with a needle every Saturday morning for a few months? :)

I'll let you know if it looks like I'm reaching my "Lab Rat" goal!

Until next time,

Kristie

MS Support Group Experience

Last night was great!

My husband and I visited a MS Support Group in Roseville for the first time. We went back and forth a little bit about whether or not to go… especially since we knew we weren’t going to make it there on time. When we finally found the meeting room, we were almost ½ hour late – and had to take one of the few empty seats remaining.

The speaker last night was a neurologist with the UC Davis Neurology department – where I was enrolled for a medical trial a few years ago. (If you read the older posts, you’ll see a little more on that.) Well – it looks like they are enrolling for a number of new trials – and they recognized/remembered me, so hopefully that will spell good news to my return to the medical trials! There was a lot of great information floating around the meeting last night. Both Randy and I agree that we will likely be back again – and now that we know where it is, next time we’ll be on time!

So, keep your fingers crossed… I just may become a lab-rat once again!

Crying Over Spilled Beans?

They say “don’t cry over spilled milk”… but what about spilled beans?

A little over a week ago we were sitting down for dinner. I was walking around the table with one of those Pyrex bowls in my left-hand – serving black beans to my girls to go along with our dinner. One muscle spasm later, the bowl shatters on the floor & beans go everywhere.

I’m sure you can imagine the chaos that followed… especially with two young children at the table. Randy’s telling the kids to stay in their chairs, Heaven (my 2 year old) is asking why mommy made a big mess, and Jessica (my 9 year old) is saying she can’t believe her mom is so clumsy. Well, the beans & the glass got cleaned up and we all sat back down at the table to eat the remains of our now cold dinner. My eyes welled up with tears and seeing that, my daughter says “It’s just beans mom.”

Okay… maybe it wasn’t the 89 cent can of black beans I cried over – or the now shattered bowl that used to belong to my grandmother.

I think it was more because for that one instant, MS had an effect on something tangible – and had I been one step closer to my child as I was serving those beans for dinner, those hot beans would have been all over her, meaning my MS would then have physically hurt someone I love dearly.

This wasn’t the first time I’ve dropped something, broken something, or even fallen because of a muscle spasm and I’m quite sure it won’t be the last. So – on a lighter note – not only does it give me an excuse to have Randy pull all the heavy pans off the stove or out of the oven, but now I can go guilt-free shopping for some new serving bowls (obviously plastic & shatter resistant)! Seriously though, it reminds me of exactly why I am working for awareness and trying to raise funds for the MS Walk this year.

Please join me in raising funds for the research in not only the cause of MS – but the cure.

Until next time,
Kristie