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

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.

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,
Kristie

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.

Diagnosis
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.)

Symptoms
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

Pain

Bladder/bowel problems

Sexual dysfunction

Balance/coordination problems

Changes in cognitive function

Mood changes

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...

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...

MRIs... Yuck!

I got a few emails from individuals - wanting to know what happens next! I'm sorry that I haven't updated this in a few days...

Well... here's the update: There's not a whole lot to update you on right now. ;)

I still haven't received the results on the lab work. I think the neurologists office might be waiting for the MRI results to come in. I don't think I mentioned that in my last posting... Since my last brain scan MRI was greatly improved (yep, yet more physical evidence that I do have a brain!), the neurologist sent me in for a Thoracic Spine MRI.

Did you know that in addition to lesions on the brain, MS patients can also develop lesions on the Spinal Column??? I didn't! I still have a LOT to learn about this disease.

Have you ever experienced a MRI? I equate it to being buried alive under a construction site. The noise is nearly unbearable & the task of being completely still for more than an hour is near impossible for me. I've been through quite a few brain MRIs, the latest one just last month... at least with those I was able to move my legs a bit when they got restless. With the T-Spine MRI, I was told to remain completely still... no deep breathing (which is my relaxation technique - yikes!)... no sneezing, coughing, etc...

Since I have been through quite a few of the brain MRIs, I've learned that what works for me is not the norm for most patients. Generally the technician will take breaks between the scan segments and talk to the patient. This technique is just not for me.

I don't want anyone to talk to me, I don't want the breaks between segments... Just hit the "go" button & get it over with! Unfortunately for me, the technician today didn't quite understand that message! In fact, I think he thought I was joking!

I had to tell him multiple times from inside that crazy machine to stop taking the breaks and just get the thing over with. I don't think it was until I told him quite sternly to either listen to me - the patient - because I know what works best for me - and get the scan over with in one shot - or find another technician that could do what I was asking for. I tried my best to stay still & remain calm in that machine for as long as I could - but when a 45 minute scan session ended up taking almost 90 minutes I was about to blow a gasket!

I have to say - having this disease and having to deal with these types of situations have really helped me be more assertive! I'm not entirely sure if that is a good thing, or a bad thing!

More to come soon!

Suck It Up!

Funny title, isn't it?

Those three words resonated in my head all night long.

I mentioned in a previous post that I had a pretty crappy MS day this last weekend. I visited my neurologist (Dr. Au) Tuesday morning and he wants to begin me on a 3-day round of IV-steroids. I've only done this once before - and it was not a pleasant experience for me. The thought process of the doctors though is that if my crappy MS day was actually a flare-up of the disease, then this steroid treatment may be able to stop the flare-up a lot faster.

Ugh. Let me tell you that I am not a person that even likes to take a Tylenol. I hate taking medication and putting foreign substances into my system... My drug of choice: Coffee. Unfortunately that doesn't exactly help my current situation though. :(

I told my neurologist that I only wanted to do the steroid treatment as a last resort. So - he sent me in for some lab work - to make sure I don't have an infection of some sort... depending on the results of the lab work - he will make a decision as to whether or not the steroid treatment is the way to go. (On a humorous note - I don't think I've ever actually prayed for an infection before!)

Yesterday afternoon I went to see my primary care doctor (Dr. Doolittle). I've mentioned him on here before. I have to say, I've been with this doctor pretty much since I moved to California - and he is the absolute best GP I've ever worked with. He doesn't pull any punches and maybe its because we've been with him for so long, but I trust him more than any other doctor I've worked with in the past.

Anyhow - I explained to him my frustrations with the mornings neurologist appointment - and he laid it all out there for me pretty clearly. He told me I basically had 3 options:
1- Deal with the current issue & risk it becoming a permanent one.
2- Request to be pre-medicated before starting the IV steroid therapy (which would mean
even more medication... ugh!)
or 3 - Suck it Up! Do the therapy treatment, deal with the side effects for a few days - but end the current relapse.

I think that was pretty much the slap in the face I needed. Someone I have the utmost respect for (other than my husband or another family member) telling me to snap out of it. That these are the cards I've been dealt. I can fold them up - lay them on the table & walk away - not dealing with anything and trying my best to pretend it isn't a reality... or I can "Suck it Up" and do what needs to be done to ensure my health and my future with my children.

So - while MS truly sucks... I guess I need to 'suck it up' and play through this round... irregardless of how crappy it may at the current moment. Just because I may want to run away and hide - that doesn't mean that my denial of the situation will change anything.

So - here's to my new slogan for the time being: "Suck it up!"

:)

Good / Bad Days - and Fighting Back

Every person in the world faces good days and bad days. There are varying degrees of both, right? Good days can range from just being grateful that nothing major went wrong on a particular day to feeling like you are on top of the world and nothing can bring you down. Bad days range from mild annoyances at work/home to having the world crash down around you (metaphorically speaking of course).

This weekend my husband came home from work and noticed I wasn’t very ‘chipper’ and asked me if I had a bad day.

“Uh huh” I replied.

“What kind of bad day? Just in general, kids, or MS?”

“Bad MS day… you don’t really want to know.”

“I’m your husband… that pretty much means I need to know” he pressed.

So – I told him about my day and the problems I was dealing with. I honestly HATE that part of this disease. I’m not going to bore you or embarrass myself by sharing all the details – let’s just say I ran out of ‘spoons’!

Any time I have a bad MS day – or moment – there is that fleeting moment where I just want to crawl into a hole somewhere and hide from humanity. That moment that I feel like a broken person... I’m sure that is natural (at least I hope so!). But after that moment of self-pity – it turns into anger & a drive to fight back.

I see so much media coverage on Breast Cancer, Parkinson’s, and HIV (just to name a few) – and the drives to raise money towards finding a cure for these diseases – it annoys me at how little attention Multiple Sclerosis receives. My guess is this happens because Cancer, Parkinson’s, and HIV all follow a somewhat predictable path throughout the course of the disease – whereas Multiple Sclerosis is like playing the slots every day… you just never know what combination you could end up with from day to day. There is so much mystery and uncertainty with this disease – you just can’t tell what will happen from day to day – let alone week to week!

I am striving to fight back and regain control. I cannot allow MS to rule my life or factor into my life decisions.

My Diagnosis / My Story / My Request

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. I also began following Dr. Swank's MS Diet.

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. I am working with two great chiropractors in Granite Bay (Golden State Chiropractic) on this though. They have spent a lot of time with me - working on stretching techniques and various adjustments that are helping improve the strength.

There have been good days and bad days. Thankfully, the good outnumber the bad!

My dream - when my daughters are my age - a cure will have been found and MS will be a fading memory.