27 March 2009


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! :)

25 March 2009

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,


20 March 2009

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!

19 March 2009

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,

16 March 2009

MS and my diet

There is a LOT of information floating around the internet on miracle diet cures – 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 are touting are really quite scary and offers a very false sense of hope and expectation. I can assure you that if any one of the people 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! Additionally, they would be shouting their findings from the mountain top – eager to share it with everyone they could find – and not charge $29.95 for the ‘e-book’!

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

Of all the things I have found after many years of searching the internet for more information on treatment options, I will tell you whole heartedly that I have found one that offers information as treatment and doesn’t tout it as a cure. This would be the information from the Swank MS Foundation.

Dr. Swank began studying the connection between multiple sclerosis and diet in the late 1940’s. He travelled the world studying the various locations and cultures and consumption habits in multiple countries – comparing areas with high concentration of MS patients with areas with a much lower MS rate. In 1950 he, along with his team, established a low-fat diet – the first of its kind. Of his 250 MS patients, 150 of them chose to follow the diet and began recording their eating habits every day.

50 years later Dr. Swank was still in contact with 14 of these 150 patients… they report that two were unable to walk, but the remaining 12 were ambulant – able to walk, care for themselves with 10 of them still leading very active and normal lives! Their ages varied from 72 to 82 years.

I don’t know about you, but as a MS patient – not only do I find that completely amazing – but I also find it abundantly inspiring!

Here’s one of my favorite quotes from this:

Our experience has shown us that patients on low-fat-diet treatment usually recover and that their recovery slowly improves during the entire period of 35-50 years or longer as long as they follow diet and rest.”

(With two kids, a job, and school, the rest part is a bit hard for me!)

The other one is this:

In 2001 “I also was visited by a man from California, who was in the intial group as well. He also had a very demanding career as a civil engineer and worked until full retirement age. He has been on the diet for 47 years and at 71 still walks 18 holes of golf and walks four-plus miles a day in cool weather.

Isn’t that incredible?!?!?!?! Even my neurologist has said that the relapsing remitting MS will turn into a more progressive form after about 10 years or so - - -but here – Dr. Swank has been treating patients for well over 50 years – and they have improved!

Dr. Swank doesn’t tout this diet as a cure but as a treatment – nor does he require you spend the money to purchase the book to receive the information on the diet. All the information and dietary guidelines are available to anyone – free of charge – on the internet! (There is a book that can be purchased to supplement the data and research on the website, but it isn’t required to get the gist of the diet.) There is a great community bulletin board full of very helpful and wonderful people that will answer questions not only regarding the diet / but about MS in general as well.

I have been working on changing my dietary habits to follow this plan. (The hardest part for me is the first year requires no red meat – but after the first year it is allows in small servings.)
I’ll update on it from time to time – but you can check out more information on the Swank MS Diet by using the link on the side of the page under quick links to learn more yourself on this amazing plan.

**All information regarding the Swank MS Diet and Dr. Swank should be attributed to and referenced to the web page: SWANK MS FOUNDATION - About Dr. Swank on the internet at: http://swankmsdiet.org/About%20Dr%20Swank.

09 March 2009

Mack Truck vs. Dodge Ram...

Slowly, but surely, I'm returning to my old ornery person! :) Someone called me this morning to check and see how I was feeling - the first analogy that came to mind was that last week it felt like I had been run over by a Mack Truck... today - it feels more like a Dodge Ram... so - I do feel a lot better... still don't want to have to do that again... but a little better is better than no better!

Randy ended up sick with the flu this weekend too... He made a point to tell me that it just wasn't right for both of us to be sick at the same time! I do have to say tough that we are VERY THANKFUL for Christina. For those of you that don't know her, Christina is our girls' "Nanny Nina" - a person that they absolutely adore. She was so very helpful this whole last week while I was sick & while Randy hasn't been 100% either.

This weekend I didn't do a whole lot of anything - just sat around and watched my kids play. I'm so very blessed! Here's some pictures from this weekend...

Counting my Blessings,

Responding to an email

I received an email asking for more information regarding MS... Here is some short info... While you read this - please consider sponsoring me in the upcoming MS Walk! You can donate by mail (email me for info) or you can donate online using the links on the side of the page.

MS - What is it?

Multiple sclerosis (MS) is an autoimmune disease that affects the central nervous system, resulting in vision disturbances, coordination loss, muscle weakness, numbness and tingling, slurred speech, and fatigue. MS is the most common central nervous system disease in young adults.

Twice as many women than men are diagnosed with MS.
Disease onset typically occurs between ages 20 and 45.
The exact cause is unknown.

There are four types of MS:

Relapsing-Remitting Multiple Sclerosis (RRMS): This is the most common form of MS at diagnosis and is marked by episodes of neurological dysfunction, each lasting several days to several weeks. (This is what I have.)

Secondary-Progressive Multiple Sclerosis (SPMS): Half of people with RRMS develop SPMS, which causes frequent relapses, shorter remission periods and symptoms that progressively worsen and become permanent. (This is what they expect it to develop into during the next five years or so.)

Primary-Progressive Multiple Sclerosis (PPMS): With no distinct relapses or remissions, PPMS results in slow decline of physical and cognitive abilities.

Progressive-Relapsing Multiple Sclerosis (PRMS): In contrast to RRMS, periods between relapses in PRMS are characterized by steady disease progression.

No one test can identify or rule out multiple sclerosis. This means that ultimately a doctor will diagnose MS by a combination of observing a person’s symptoms, and ruling out other possibilities. This is called a ‘clinical diagnosis’.

An MS diagnosis usually begins with a complete neurological examination and a discussion of your full medical history with your healthcare provider. He or she will need an overall view of your health, including your symptoms and when they started. However, it may still be difficult, if not impossible, to confirm the presence of multiple sclerosis without using certain procedures.

Many healthcare providers use magnetic resonance imaging (MRI) to help diagnose MS at an early stage by providing a detailed picture of the brain. Early diagnosis means that treatment can begin right away, rather than waiting for continued relapses to confirm diagnosis.

Treatment Options

Although research continues, a great deal of progress has been made in understanding and managing MS. Previous research has yielded injectible treatments, which are daily, weekly and monthly and are marketed around the world. (I am on the Avonex therapy - which is a once a week injection at home.)

Multiple sclerosis (MS) can cause a wide range of symptoms. Some problems occur often, and some are seldom seen. The course of illness is different for each person. Even when there are no symptoms, there is progression of damage to the central nervous system over time. That’s why it is important to stay on MS treatment.

Common MS symptoms are:

Vision disturbances

Loss of muscle strength in arms and legs

Change in sense of touch


Bladder/bowel problems

Sexual dysfunction

Balance/coordination problems

Changes in cognitive function

Mood changes

04 March 2009

Day Three

Here I sit - back in the infusion center for treatment day #3.

You don't know how glad I am that the clock is ticking in my favor today... As I type, there is just a little over an hour left to go - and today they take this IV out - - - hopefully for good!

I know that receiving these treatments aren't designed to be a walk in the park - but my goodness - I sure wish it wasn't as icky as it has been.

With every pump of the machine, the burning begins... just as the burning begins to subside, the machine pumps another dose into my arm - and the burning begins all over again. Yep - just over an hour to go.

I do have to admit though - this time around has been much better than my experience just under two years ago. That time I was so nauseous that the idea of eating anything wasn't a pleasant one. At least this time, I've only gotten sick twice on the first day. Day two, I opted for no breakfast before starting the treatment and I was fine. I think I should have opted for that again today!

I do think that I will be able to return to work tomorrow... maybe not for a full day - but I'll do my best! I think I just might go nuts if I'm stuck at home for much longer... I am just not cut out to be a stay at home wife / mom. There is a lot to do at home though... hopefully I'll be able to play a little bit of catch up this afternoon... One of the nurses here said to be sure not to 'over-do-it' when I go home - but I really think I feel better if I keep moving. The more I just sit - the more I start to feel ill. Just like the weekly injections I get - if I keep moving around after I've received the shot, I don't feel quite as bad as when I go straight to bed... when I do that, I end up being very very tired and sore.

Well - I am going to log off of here for now... try to work on a bit of work work and maybe some school work too...

Until next time...

02 March 2009

Back at it again...

Well - I'm not sure if a person would say that I've been avoiding updating the blog... but if I were to be honest - that is exactly what I've been doing... in a previous post, I made mention of the doctors orders for IV Steroid treatment... and my disdain/attempted refusal. I think that in some small way, I knew that if I actually put the fact that I had lost my fight against steroids - it would mean that I had accepted that this was going to happen. However - as I click away on the keyboard right now, I am sitting in the infusion center at the hospital in Roseville.

I fought having to return for another steroid treatment - as long and as hard as I could. I did nearly all the other lab work and testing possible - with the hopes that I could avoid having to face the reality that my current issues are actually the ugly head of MS raising up again.

Do you know how sometimes when you feel a cold coming on... you do everything in your power to deny its existence... sometimes it works - and sometimes it doesn't. Unfortunately, my stubborn denial didn't make this issue disappear this time.

So - here I sit. The IV is in... the drugs are dripping... and I'm doing my very best to keep a positive attitude.

All the while - this reminds me exactly why I signed up for the MS Walk. To take some active part in fighting back against this stupid disease! Thank you very much to everyone that has donated thus far. I've actually met & exceeded my initial fundraising goal of $500! So - with over a month left to go, I've raised my goal to $1,000. Please - join me in fighting back.

Time to get the IV checked again... until next time...