So I've decided to stop the auto-feed of my blog to my livejournal. It just isn't working properly, and I find myself spending the time to edit every post (because I can't STAND the way it feeds without any kind of formatting)and re-load photos and copy links and it's just a huge pain in the ass. I'm disappointed it didn't work as I had hoped. Ah, well.

So if you still want to read my blog (you do, don't you?), you'll have go to aaaaaaaall the way over here http://wrappedinivy.blogspot.com/ (or here http://nikimcstitchy.blogspot.com/ to see my stitching blog). It's a bother, I know. But please, won't you please? :)

I'm linking to this post on my friend Bekah's blog not only because I want to win one of her fabulous creations (oh please pick me!), but because I want to spread the word about what a clever, creative and stylish gal she is!

She does some darling things with vinyl, which you can see at her
Spell It Out Designs blog. And you must must must check out her hand-made iPod/phone/camera cases at her

Needle Pin Productions etsy store, which were recently featured on TV! (Bekah's bit starts at the 5:00 minute mark)

I gotta get me one of those! Anyway, check her out!

Good news first.

I finally spoke with my neurologist today. My MRI comparisons actually showed no significant changes in the progress of my disease. There are still some active lesions going on, but nothing new. This was great news! And it gave me the confirmation I needed to go forward with the treatment plan I was leaning towards.

I did a lot of research on the new medication she suggested for me. I read forty
different patient experiences on this drug and spoke to five people I know personally who are currently taking it or have taken it. I got very little positive feedback. Most people experienced side effects that were bad enough to hinder daily function. Of those who chose to stay on the treatment, they had been in much worse shape prior to starting the treatment (some were struggling to walk) and this drug
made a significant improvement in their ability to move and function. They felt the trade off on the side effects was worth it. And I would be inclined to agree.

However, I am not quite so progressed. While I definitely struggle with certain physical activities, the side effects, I feel, have the potential to put me in a worse state than I'm in now. I simply can't justify making myself feel worse and I want to feel as good as I can for as long as I can.

As such, Nick and I felt we wanted to give the treatment I was originally on another try. Our research found that the reactions I was having were not uncommon and they seemed to be innocuous. My doctor agreed that there was most likely no harm in
giving it another go. If I have more problems, it's time to move on. But I feel it's worth a shot. So we're moving ahead. Whew!

Okay, now the bad news.

As I'd mentioned previously, I was torn over the decision to take a new job. The new job would mean lots of sacrifices, most notably a huge cut in pay. But it would get me off my feet and offered amazing benefits. After much agonizing, praying, and even a tarot reading, I decided I would accept the job were it offered to me. And it was
looking good. They asked me in for an interview, after which they gave me a tour of the building and even the benefits packet which contained all the options available and their costs. They called all of my references over the last few days, and it was sounding like they were definitely interested. I was getting excited for this new
venture.

Today, however, I received their form letter in my email explaining that they did not feel I was right for the position at this time. Bugger. Seemed odd to me that they would go to all that effort if I wasn't right for the job. But...the job market is saturated right now. There may very well have been someone else more qualified. Or more in need. I'd be lying if I said I wasn't awfully disappointed, but perhaps it just wasn't meant to be right now.

Still, all things considered, I'm feeling pretty good. My energy levels have been
inexplicably up the last few weeks, which has also significantly buoyed my spirits. It's been a long time since I could adequately make it through the day at work, and I've been able to make it up the stairs without help once I get home. I've even had the energy to cook dinner. Talk about the little things. But it's been a long time since I've felt this good, and I'm going to appreciate every little bit.

Me: "So what sounds good for lunch today, honey?"

Nick: "Brains."

Hope everyone has a lovely weekend!

Decisions.

Decisions, decisions, decisions.

I'm not a fan of decisions. Ask anyone who knows me, they'll tell you. I don't care to be put in charge of deciding anything. Lunch? You pick. Movie? Whatever tickles
your fancy. Blue or pink? Why choose...get both.

So it should come as little surprise that I am having a dickens of a time with two major decisions that lay before me.

I'm still up in the air on the results of my recent MRI, which is subsequently delaying my treatment decision. Whether or not the results will sway my choice, I don't really know, but it probably couldn't hurt.

I don't like having to choose, let alone having to choose between the lesser of two, or in this case, three evils, which are as follows:

- Go back on my original treatment and hope that the sudden onslaught of reactions was a fluke or the result of a poor batch of medicine

- Try a new treatment that may stave off disability but at the cost of potentially rendering me non-functional due to the severe side effects

- Do nothing and hope for the best.

If only it could be a bit more cut and dry...




I also have a job interview coming up this Friday. It's with a highly acclaimed and stable company and offers much better hours, affordable benefits, and will be much
less physically demanding. The one downside is that it's a significant cut in pay. Our medical expenses have already been much higher than last year, and we're only in February. And a new insurance brings with it fresh new deductibles. So taking this job would mean more expenses on less income. But it has the serious potential to stave off the loony bin much longer than my current job.

Maybe I could run some computer simulations...



One thing is clear, however. Eventually, I'll make a choice. And I know that, even if the outcome is not ideal, my head probably won't fall off. We'll find a way to manage.

But can't I just have cake?

Maneki Neko literally translates to "Beckoning Cat", but is also known as "Welcoming Cat" or "Lucky Cat". This common Japanese sculpture is believed to bring luck to the owner.



This little dude was given to me by my dear friend Angie, to bring me luck and good health. Isn't she a gem? I'll take call the luck I can get! Thanks, friend!

The following conversation took place during a phone call I received
from a nurse at my neurologists office:

Nurse: I'm just calling to let you know we have the results of your MRI.

Me: Oh, good.

Nurse: It looks like there have been changes in the MS.

Me: I see. So, what exactly does that mean?

Nurse: Well. I don't exactly know.

Me: Uh...

Nurse: The thing is, you were supposed to take the copies of your previous scans Dr.
Banks gave you to the imaging center so they could make a comparative evaluation.

Me: Um, no...I was not instructed to bring any copies of my previous scans nor did the imaging center ask for any. And Dr. Banks didn't give me the copies. They should still be in my chart.

Nurse: No, she said she gave them to you.

Me: No, we looked at them at my appointment last week. They're in my chart.

Nurse: Let me just....oh! Well look at that, they're right here. Huh. Well, Dr. Banks isn't back in the office until Monday, so I'll have to check with her and see what she wants to do and go from there. I'll call you back on Monday.

Yes, wonderful. Call me back on Monday. And thank you for calling today to give me absolutely NO useful information, but just enough to cause me worry. "Changes in the MS". What the fuck does that mean? Did she seriously not expect any follow up questions to that vague statement?

I am seriously losing my patience with the stupidity and the incompetence of these health care "professionals". Not only does my doctor not have the decency to deliver my test results in person, but she gives the assignment to an individual who hasn't been provided with adequate information and who isn't qualified to answer any of my questions. Genius!

An easy notion to forget, particularly when you've had a crap day before 10am. I won't go into the details, but let's just say I needed some cheering up. And fast.

The blokes of Monty Python are the very epitome of silliness and embody the idea that life is a bunch of shit,so let's make fun of it. Yes. Lets!








And let's not forget this classic..

I feel better now, don't you?

As I've said before, I can't get enough of my little nephew. He's just
getting to that stage where he's starting to smile a bit and become
curious with the world.



Just look at this wee little smile.



He can't get enough of that hand. Looks tasty, no?



Whoa, kid packs a mean right hook. Put up your dukes!



Dude, are you guys seeing this? It's trippin' me out,man!


I don't know what he was looking at there, but all I'm looking at
are those nomable cheeks. I want to chomp on them just a little!

I am participating in the MS Walk this year! I've been wanting to do
this for the last two years, but scheduling conflicts kept coming up.
However, that won't be an issue this year and I'm really looking
forward to raising some money for this cause and spending a fun day
outdoors. (I did the Arthritis walk with my dear friend Mindy last year
and had a great time).

The walk will be held in down town Salt Lake City
(starting at the Gateway) on Saturday, April 11, 2009. You can view my
personal event page
here, where you can also sponsor me (my goal is to
raise $150, but we can totally beat that, right?) and see the goofiest
picture of me ever. (Incidentally, that picture was taken by my good
friend's three-year-old son. I was brave enough to let him hold my
camera for five minutes and he managed to snap that shot. Not
bad!)

Also, if you are interested in joining me in the walk (please do!)
you can register here as an individual, or contact me and we can form a
team! 100% of dollars raised go directly to the MS Society of Utah to
fund support programs, services and research.Please join me in
supporting this worthy cause.

And thank you

Coraline is one of my favorite stories from author Neil Gaiman.
Actually, it's one of my favorite stories, period. I'm quite looking
forward to seeing the film adaptation.

This just made me smile.

I found an unopened fortune cookie in my purse today, from lunch I had
earlier this week. I had forgotten I'd thrown it in there. Being a bit
snacky, I cracked it open....



Wow. I really need to hear that. And I
really hope it's true. I put the fortune back in my purse, for future
reference. I ate the cookie.

I saw my neurologist today for a follow-up; it's been about eight weeks
since halting my treatment due to some reactions. I was expecting her
to tell me she was not concerned about these reactions and instruct me
to resume my injections. I'm not exactly sure why I was expecting this.
Perhaps I was just hoping for this. Alas, this was not the news I
received.

She explained that she was concerned with these reactions,
particularly the tightness in the chest and did not feel that it would
be wise to resume this particular medication. She went on to say that
given my increase in symptoms the past few months, she felt it was wise
to get me back on a treatment with one of the other medications.

My heart sank. Since my diagnosis two years ago, I have been adamant that
I was not interested in trying any of the other treatments available;
their side effects seemed too risky and too much for me to cope with.
And now I was hearing that I needed to get back on a treatment, and
that these other drugs were my only options. I started to tear up a
bit.

I felt like I had come so far and now I feel like I am back at the
beginning again. It was a gut-wrenching choice to chose a treatment the
first time around. I don't much fancy the idea of facing all that
unknown again.

The neurologists treatment of choice at this point is
an "interferon immunomodulator". Interferons are a family of small
protein molecules that are produced by cells in response to viral
infections. They work in a way that is not understood, which is pretty
much all I can find about how this medication works. They don't know
exactly how it works, it just does, and can reduce the number of MS
attacks and slow the progression of the disease. Side effects include:
-Flu-like symptoms such as aches and pains, fever, chills, sweating,
headache, fatigue and nausea. These tend to be worse at the start of
treatment and improve with continued treatment.
- Injection site reactions such as pain, inflammation or abscess - Pain in the muscles or joints
-Flushing
-Skin reactions such as rash or itching
-Diarrhoea
-Loss of appetite
-Difficulty in sleeping (insomnia)
-Depression - Hair loss (alopecia)
-Disturbance in the components of
the blood
-Heavy or irregular menstrual bleeding
-Dizziness
-Under or overactive thyroid
-Confusion
-Seizures (convulsions)
-Inflammation of the liver (hepatitis)

Sounds fun, no? Blood work is required every three months in order to monitor liver function. Swell.

I was also given a big booklet about this medication, full of photos of
all the happy people who are "taking charge" and "feeling good about
tomorrow". You know, completely unbiased information from the
manufacturer. Give me a break.

I've been trying to tell myself for the past two months that I don't really need to be on a treatment. That really, my MS isn't that bad and I'm sure if I can just cut back my work a little and exercise more and eat better, I'll be fine. Really, there's no need for me to put myself through this. I say that to myself. Then I see Stuart Smalley pop into my head and tell me that "denial is not just a river in Egypt". Yeah. I know.

I also know that these side effects probably sound a lot worse than they really
are. And that even though I'm coping (if only barely somedays) with the
symptoms now, they are likely to just worsen over time. And studies
show that getting on and staying on a treatment is the best defense
against disability from this disease.

My neurologist also explained that of all of her patients on this particular medication, none of them have so far suffered any liver troubles. She acknowledged that liver problems do happen, but that because this is monitored so closely, any
issues that arrise are typically reversable.

Yeah. I know all that. Still...I just don't want to fucking deal with this. But, this is my cycle. Right now I have to allow myself to just feel whatever it is that I feel. I just need to let the emotions flow and experience my fear and sadness and anxiety and whatever else. Eventually my resolve will kick in and I will do what I have to do. This disease is unrelenting, so I will be unrelenting too.

Over 71, 400 jobs lost in one day.My heart goes out to all the families
this recession is affecting. I'm counting my blessings for sure. As
much as I hate my soul-sucking job, at least I still have one.

I was sitting at the front desk at work today when a customer
approached. I recognized him immediately. He is a very nice, older
gentleman and a long-time customer with whom we are all very familiar.
I greeted him by name and asked how he was doing and what I could do
for him. He explained he needed to reorder some contacts, so I
proceeded to look up his records in the computer.While I was typing
away, he leaned over the desk and, with a slight swagger in his voice,
said: "Boy, you smell really good. Don't mind if I just lean in and
have another whiff.".Why, yes...I DO mind as a matter of fact.
Seriously, did this guy just smell me? Did he really just lean over the
desk and ask if he could "have a whiff"? As if to confirm the
uncomfortable reality of the situation, he followed up with: "Mmm,
yeah...that is quite nice.".Insert "Side Show Bob" shudder here.So I
know I've known this guy for ten some-odd years and we're all on a
first name basis and everything, but I'm just not sure how he felt his
comments were a) in any way appropriate and b) not creepy as shit.Oddly
enough, this is not the first event of it's kind. If I had a dollar for
every man with an AARP card who made a creepy and/or innapropriate
comment to me, I could finally make that trip to Europe. So what's this
all about?Perhaps these men are just trying to relive their youths in
some feeble way, or maybe they just get a kick out of flirting with
younger women. Conceivably, they are just plain dirty old bastards.
Sorry, fellas...but it's gonna take a bit more than your senior citizen
discount for Denny's Grand Slam breakfast and a tube of aspercreme to
win me over. How about a time machine for starters?In all reality, I'm
not sincerely offended by any of these off-color gentlemen. Mostly I'm
just baffled by their motivation and tastelessness. And I wonder what
their wives would say if they were caught, for example, sniffing pretty
young girls at the eye doctors office like a kindergartner sniffs
glue.Still, perhaps I should start keeping track. I'll put a dollar in
a jar for every dirty old dude to cross my path and we'll see how soon
I can get to Europe.

1. A lovely lunch at the Tea Grotto with a fabulous group of ladies!
Good friends, amazing tea and hearty helpings of laughter. 2.
Discovering the Doctor Who Magazine while perusing at Barnes And Noble.
I'm so geeky, I bought it. It kinda made my day.3. New episodes of the
Daily Show and the Colbert Report.4. Finally getting the hang of the
SR-201/I-80/I-15 interchanges. Makes getting downtown a snap.5. This
guy.

I am posting just this one thing today, because this takes up all 5
spots on the things that graced me today. I know that Prop 8 passed
over two months ago, but this is still an issue and it's one on which I
have very strong convictions. I have found it difficult to put into
words precisely how disgusted I am that Proposition 8 actually passed,
but Keith Olbermann puts it brilliantly. Quite frankly, I thought
America was better than this. I thought we had moved passed this kind
of discrimination. We just elected an African-American president for
goodness sake! With all the hate and horribleness taking place in the
world right now, shouldn't we be striving for peace and tolerance?
America is supposed to be the greatest country in the world. What kind
of example are we setting? We hold these truths to be self-evident,
that all men are created equal, that they are endowed by their Creator
with certain unalienable Rights, that among these are Life, Liberty and
the pursuit of Happiness.Indeed.If you're going to take the time to
watch this, I ask only that you watch it all the way through and really
LISTEN to what he is saying. I am open to all comments, but any
containing hate or offensiveness will be deleted.

You know, I thought it was going to be a stretch to find time and
things to write about once a week. Interestingly enough, however, I am
finding myself graced with little things that make me happy each day. I
think they've always been there, it's just now I'm actually taking the
time to notice. Today, for instance:1. Having lunch and enjoying an
afternoon with my sister. She's the neatest person I know. 2. Holding
my little nephew. I love him so! And the top of his head smells good
(seriously, go smell a baby's head...they smell amazing.) 3. Curry. 4.
Connecting with an old friend and finding we have a pretty significant
trait in common. 5. Nick giving me a Hershy's kiss, because he's sick
and can't give me the real thing. I can't wait to see what graces me
tomorrow!

I'm feeling really blah these days. Just blah. And I'm not the only
one. I think it's the whole January transitioning back to reality,
dismal weather thing. It seems everyone is in the same gloomy boat. And
if I had my way, we'd sail this melancholy ship out to the Caribbean
somewhere and get drunk and play casino games and lounge on the deck.
If only that were possible. But, I'm not going to let stupid January
completely cloud me over. So in keeping with my objective (and because
there is nothing else interesting to write about), here are five things
that graced me today:1. Wearing my new pink zip up hoodie (with sparkle
embellishments).2. My husband giving me a second, lingering glance as I
left for work this morning (yes, I saw that!) and then, when I got
home, remembering to tell me he thought I looked cute. 3. Sitting in my
car during lunch and taking off my shoes. Bliss! I hate shoes.4.
Hearing a co-worker tell me that her husband thought I was "looking
good" at the Christmas party and wondered what I had been doing to lose
weight. God bless the man.5. Hearing the new Morrissey single on the
radio.

I think the phrase rhymes with "clucking bell".It's just been that kind
of day. Well, week. Actually the whole month has been rather
craptastic. And we're only halfway in. Brilliant.But let's not let all
the wank cast a shadow on the good stuff, shall we?. Continuing with
the Grace In Small Things challenge, here are a few things that graced
me today:1. A warm kitty sleeping on my chest, his head rested directly
between my cleavage. Aw.2. Rewatching episodes of Doctor Who (oh,
yes!)3. My brown and white polka-dotted head band.4. My amazing,
loving, thoughtful, kind, wonderful, hot, sexy husband.5. Betty
Crocker. Oh. My. Stars. This is my porn, people. (Note: This porn IS
suitable for work! So go ahead...click your brains out.)