Tips for ICU patients and families

I wish all my patients and their families would follow a few simple guidelines...would make life easier!

In appreciation of critical care nurses...

I keep seeing these posters and felt compelled to make one for ICU nurses. We rock!

I had an awesome day skiing!

I went skiing for the first time this season...it was fabulous! I was worried that I was going to be awful and stuck on the bunny hill most of the day, but I got my ski legs back pretty quick! After two quick runs on the bunny hill, my friend and I rode the big lift to the top of the mountain (OF COURSE it stopped on us...why does it always stop when I'm at a really high spot over really hard ground?)

Though we spent most of our time on the green runs, we snuck in a few small blue runs and I have to say I did better at them than I did last year! There's one run called "Lower Main" that is steep, straight and long. My friends talked me into doing it and all I can say is peer pressure is a bitch. I pretty much went down sideways, but I didn't fall and I made it to the bottom! That run will be conquered!

Here is a pic of me after our beautiful day!

In other news, I was thinking about my RDW the other day and realized that I hadn't checked in in awhile...I looked at my lab results and saw that with my last draw it was in the normal range! Could this mean my bone marrow is playing nice? Interestingly, my RDW shot up as soon as I started working night shift...now that I've cut back on my schedule to two nights/week it was normal. Good thing I am starting day shift someday (hopefully) soon!

In other news, made some super delish (but probably a bit too garlicky), faux mashed potatoes using cauliflower. Now, I have tried this concoction in the past, but that was before I welcomed my VitaMix into my family. When I made it before it had an awful, grainy consistency...not anymore! Smooth, creamy and delish! A fabulous substitute for carby potatoes!

So, if you are interested in making them...here is the linky-poo:
Click here for yumminess!

I am so high-tech and awesome, it's scary.

I realized as I was sitting here pondering life and awesomeness, that I probably don't blog as much as I should because I have two different blogs and it's sometimes a hassle to deal with them both. OK, to be fair, I haven't posted to my nursing-related blog since I started working as an actual nurse...see what I mean by hassle?

So, in a sheer move of awesomeness, I merged them together. You now have all my musings in one convenient place. Ta da! And though no one else reads this...it's kind of neat to go back and read everything I've written over the years. Probably what keeping a journal is like, only I suck at keeping journals, too.
_______________________
Good kitty: Had homemade juice with breakfast.
Bad kitty: Did not exercise today, but I'm sick so I get a pass.
Short-Term Goal: Get the office unpacked (did I mention we MOVED???)

Wow, I am really bad at blogging.

I really need to get more stick-to-itiveness in my life...not exactly  my strong suit. Maybe it's that my blog lacks focus (well, is being awesome a focus? If so, then I guess I'm covered), or maybe I just have ADD, or maybe I'm just lazy.

Either way, as the new year rolls around, one can't help but think of ways to make this year better than last year. Essentially the only New Year's Resolution I made was to be as awesome as possible despite this stupid blood disease and the fatigue-inducing medication I take to keep me from keeling over. A big part of that involves making healthier choices overall as I'm sure my craptastic diet as of late is not helping. With that said, I actually JUICED yesterday (and no, I did not take steroids...I made juice!). It has been so long since I used my juicer I almost forgot how to put it together....how sad is that? I also forgot what a holy heck of a mess juicing can be. Regardless, I made some delish juice which I call "Sunrise Juice"....here is the recipe (it's the orange colored juice in this awesome pic):

A fruitful afternoon of juicing! Deee-lish!

Sunrise Juice
4-6 carrots
4 stalks celery
1 lemon
2 apples


As for the PV...been feeling run down for awhile now. In a stroke of sheer genius I realized that interferon therapy and night shift do not mix. I spoke with my oncologist/hematologist dude and he suggested I cut back my work hours while working nights. So that's what I'm doing...and despite having a horrible cold this past week, I can tell I'm going to feel a TON better with this adapted schedule. Hoping to get on day shift soon since I kinda sorta need a full paycheck...organic produce is expensive!

Have an awesome day, all one of you who ever read this!

I've been water boarded.

So today was Bikram Yoga Day 4! Note to self: do not eat pizza on a yoga day. Just don't.

Things went pretty good for the first half of the class...made it through the standing series with only a few eensy weeny breaks. At one point, there was so much sweat pouring off my face, that it went up into my nose during one of the forward bends...since my mind wonders in yoga (because I am a bad yogi), I couldn't help but think of water boarding and other various forms of torture. Torture not unlike what I was, myself, enduring.

But, of course, it is a torture that is self-induced, so I must suck it up and venture on. And venture on I did. But by minute 55 I am wanting to flee. Desperately. I am thinking up strategies to make the last 35 minutes of class go by more quickly. None of them work.

At minute 60, a guy in the corner leaves. I am overwhelmingly grateful for the rush of cool air that sweeps over my body as he opens and closes the door. These small kisses of breathable air are what keep me from vomiting on my Yogitoes/Manduka combo. Secretly I think, "what a wuss."

At minute 65, we lose another one. The teacher asks the student if she can just lie in Savasana, which is answered by a curt "no" and a hasty exit. I once again await the wash of air. Aaaah...at the rate we're going, I might just make it through. After the back bending series, I try to get back into the swing of things, but any posture that compresses my belly brings the nausea back...what the eff is up with Bikram and all this organ massaging? Gah. Slow breath. Deep breath. Bikram obviously did not eat leftover pizza on yoga days. Bikram is obviously smarter than I am. Or maybe they don't eat pizza in India? Not sure if I could eat Indian food on yoga days, either.

I do my best to not stare at the clock as I silently curse Round Table and secretly wish for more students to leave the room. By minute 80, I am home free...just a couple more postures and then I can breathe again, can move again without feeling nauseous, can stand up without seeing spots. Granted, I sat out for most of the floor series, but at least I didn't vomit...and I didn't leave the room.

And yes, I will try again tomorrow.

Hey Hot Mamma!

So if you've been reading my blog (and who hasn't), you will know I started a weight-training routine about 6 weeks ago. Amazingly, I stuck with it religiously for a whole month...woohoo! Then, I went and mucked up my hands at work so I've been basically "hands-free" for the past couple of weeks (though honestly, I think I found some other excuse to stop lifting weights prior to this...can't even remember what it was...ha!). Obviously, I can still type, but can't do any gripping motions at all...kind of necessary for grabbing those dumbbells! Anyway, I knew I needed to exercise but also knew I needed to give my hands a break. A Bikram yoga studio opened up near my house about a year ago and I finally decided to just bite the bullet and go. (Side note: Only a moron decides to start a Bikram practice in the summer.)

Days 1-3
I went for the first time last Friday on the spur of the moment...had about an hour before class started to "pre-hydrate" so it is no surprise that I felt kinda icky through a good portion of the class. I even had some panic moments in the last 25 minutes or so where I felt like I was going to suffocate if I had to breathe that hot-as-hell air for one more second. Needless to say, I spent a good portion of the class lying down or kneeling...hey, I ain't proud!

 The studio owner said the nausea would become less noticeable the more I came to class, and encouraged me to return the next day. I wasn't sold on the idea until (drum roll please....) I woke up that morning with NO PAIN in my hands. Major victory here folks! So, off I went...and it was indeed a much better experience. I still sat out some of the poses, but never had that panic feeling and didn't really feel much nausea either.

 If twice in two days is good...then thee times in three days must be even better...right? I woke up early (around 2:30) and rallied myself to go to the 4:30 class right before work. My original plan was to go right after I got off work and then sleep a peaceful, exhausted sleep. However, this idea was quickly pushed aside in favor of just skipping the yoga and going straight to the sleep part. I'd like to try it sometime though because it was quite the race to get showered, prettied and dressed in time for work...but I made it...soaking wet hair and all! Not sure if going right before work is the best idea as I was EXHAUSTED and feeling sick by 4am. Since I'm on light duty anyway, I decided to take an hour of PTO and ended up leaving work around 5:30am...slept all day today unit 6:30pm.

 My goal is to do as many classes in 10 days as I can...I think I can get 9 classes in if I try my "go after work" experiment on Sunday. If I do that, I can be home and showered by 10am and sleep a solid 6.5 hours. That's plenty, right? That's about all I ever get on work days anyway, and I'm hoping the yoga will help me sleep more deeply. We shall see. OK, it's 12:15 in the morning and I've got plans to hit the 9:15 class...probably should think about sleeping at some point :-)

I have workout ADD

Remember when I said I was going to start Body for Life on Monday? Well, as I was cruising the interwebs looking for information about women and weight training, I came across something awesome. The Venus Index.

The VI is a workout designed to accentuate the female shape...basically the hourglass figure. You do some easy calculations based on how tall you are and voila...it tells you the ideal measurements for shoulders, waist and hips...measurements that correlate to the Golden Mean. Yes, I just got all "da Vinci" on yo ass. Ha.

One of the things I LOVE LOVE LOVE about this program is that the workouts change each time. Yes, there are a general selection of exercises but they get mixed up a bit, poke their heads in here and there. One workout may have you doing Bulgarian Split Squats...another has you doing reverse lunges. It's brilliant because I do not at all like doing the same ol' routine week after week after week.

The program also helps you figure out how many calories you should shoot for each day, and this is where I pouted a bit. I HATE counting calories, hate it hate it hate it. (Yes, that was a temper tantrum). But after seeing the amazing (and I mean AMAZING) transformations of these Venus women, I was sold. We're talking about people who worked out, ran marathons and were still fluffy. They start doing the VI workouts and watching calories and BAM...instant goddess. Well, not instant...but goddess, for sure. We're talking fitness model awesomeness here.

Happily, I found a nifty little app called "My Net Diary" that makes counting calories pretty easy. It even has a barcode scanner function so you can log your packaged items super quick. So far, I dig it. Plus, it's helping me be more accountable. I found that I was reaching for some kind of a snack the other day and thought, "Do I really want to log that?" NOPE...drank some water instead, I think. I eat when I'm bored, so this is a very good thing.

After the first workout I thought I was going to die...the muscle soreness had me walking funny for a couple of days. Powered through the second workout though, and am happy to report that I went on a bike ride today...I thought it might help to work out some of the soreness. We shall see. I've got another resistance workout tomorrow, then two days off. Joy oh joy because I work three in a row this week. Blech. Hard to workout with those long shifts and flipped around schedule.

I guess that's it! Stay tuned for more awesomeness... :-)

Long time no bloggie.

I have admitted it before...I am an awfully inconsistent blogger. And besides, I think I only have one reader (Hi Cher!), so I don't feel that much pressure to update since I chat with said reader on a pretty regular basis. That said, I am going to try to get better at updating this thing as I am really looking for a way to stay motivated as I strive to get as fit and healthy as possible. I have had a bit of a setback in this department, but am starting to get more active again. Now if I could just dust off my juicer all would be bright and sunny. One thing at a time.

As for the stupid ol' bone marrow disorder...platelets at last check were 451! ALMOST there, ya'll! I'll be very happy when they drop below 400, and ecstatic if they ever drop into the 200s...that would be amaaaazing! If they get down to the 200s, I may talk to my hematologist/oncologist about decreasing my Pegasys dose. At the rate I'm going, that may be awhile, but at least I'm not having many side effects from the meds.

Sooooo....on the fitness front, I am starting Body for Life on Monday. I did the program waaaay back in my early 30's or so...I lasted about a month and got totally burned out. Sadly, I took before and during pics, and I could actually see a change. I kick myself all the time for not sticking with it. Anyway, since I know next to nothing about weight training and there is SO MUCH to learn, I figured that starting with BFL would give me a good, basic education and that I can embellish from there.

In other fitness news...I'm currently doing the Couch-to-5K training program and I'm on week 4. My runs this week involve intervals of jogging for 3 mins and 5 mins, with walking in between. I did one yesterday (in the rain, no less!) and it was fine. About 5 workouts from now is the dreaded 20-minute jog...we'll see how that goes.

I have also started climbing again...so much fun! Getting back into the harness was tough...I had to start with the easy easy climbs, but am now back to doing 5.10a and am working on moving up to the 5.10b climbs...in a few weeks I'll be back where I was before, playing on the 5.10c routes. Woo hoo! Now if I could just master those darn overhangs, I'd feel like a stud-ette. The scary thing about the overhangs, is that when you fall off them you swing waaaaay out. Super scary when you're 30-some feet off the ground. Yikes!

Ok...gotta dash and start planning my grocery list and meal plan for my first week of BFL. I need to try to find a way to stay away from the eggs...as I recall I got totally "egged-out" when I attempted this before. Something about eggs stimulates my gag reflex if I have to eat them more than once or twice a week.

Ciao!

Tentatively optimistic...

I went to the lab today, expecting things to be the same...I was actually expecting my hematocrit to be up (no solid reason, just superstitious I guess!). Well....(drum roll), the results are:

Hematocrit: 39.6, down from 40.3
WBC: 7.1, down from 7.4
Platelets: 780, down from 995

WOO HOO! My platelets have not been this low since I was diagnosed!!!!! I am hopeful this means the Pegasys (Interferon) is working at my current dose. I am happily not having ANY side effects from it at all, but don't want to increase my dose either. I would gladly decrease it, though! I've been "conversing" with some people online and sounds like many take half the dose I'm on...that would be amazing!

Ok...I would love to write about all the fabulous stuff I've been doing lately, but I'm sooo tired. I need to go put my feet up and turn my brain off for a bit. Gotta work the next two days, and I need my strength!

Love and hugs to all,
Mo

Yummy cereal and a new veggie!

In my efforts to be as healthy as humanly possible, I went to the farmer's market today in search of delish organic produce. Sadly, most of the farmers at the market use pesticides, making it a not-so-healthy experience after all. I did happen across a couple of organic stands, and picked up something I've never had before...a lemon cucumber! Isn't she pretty?

I am going to try to pick up something new every time I go...I also went to the Co-op and got a few new fruits (I forget what they're called...one is a melon and the other was a type of plum or apricot or pluot...I don't remember, but I'm sure they'll be amazing!). As for the cereal I made today...super delish! Here's the recipe:

Mo's Awesome Breakfast Cereal
1 cup or so of fresh organic berries
1 T freshly ground flax seed
1/4 cup or so of chopped raw walnuts
1 T of hemp seeds
1 T raw shredded coconut
1/4 cup raisins
1 tsp cacao nibs (optional)
1/3 cup raw granola (optional)
Almond milk

It's so good! I just realized a drizzle of agave nectar or honey would be super yummy too!

In other news, I took my third shot of Interferon on Friday night. I slept like a rock, then had another loooong nap on Saturday. Happily, I don't work any Saturdays for the next 6 weeks, so I can get a feel for how the medication affects me. If I keep up my napping habit, I'm going to have to tell my manager I can't work Saturdays, but would really rather keep things on the down-low until I get hired into a permanent position.

Off to clean the house before I totally run out of steam!
Mo

Homestead Mo

When one makes green juice, one goes through the vegetables in a big way. For example, my absolute most favorite juice that I would like to drink every day has 4-5 carrots, 4 stalks celery, one apple and one lemon. I am constantly going to the Co-Op for carrots, celery and lemons! I buy the apples in bigger quantities b/c they last a while, but even when I buy the 5 lb bag of carrots, I am still always running to the store! And some juices take a whole head of romaine plus a bunch of other stuff...so while it is a great way to pack in massive amounts of nutrients, it is rather time/money consuming.

So...I am planting vegetables! Tom took out two or three rose bushes that were getting all our great vegetable-growing sun and I planted romaine, broccoli, swiss chard and onion in that spot. Yesterday at Home Depot we bought a wine barrel planter and in that I planted some other lettuce (butter maybe?), chives and some other kind of onion. I also picked up some carrot seeds. I need to find a pot or two and get those babies going...apparently carrots around here do better in pots b/c the soil is so dense.

Once we get our bathroom/plumbing project finished, I'll have another area in the back that gets pretty decent morning sun...might be able to plant something there...not sure. The tree in the yard has gotten so big that it's casting a lot of shade, which would ordinarily be a good thing!

Aaaand, for our anniversary we planted a Meyer Lemon tree...he's a little dwarf tree and so cute! No lemons yet and probably won't get any until the spring, I'm guessing...especially if he gets cold over the winter. He looks pretty hearty though...a fighter! Ha!

There is an awful lot to learn about gardening...it is rather overwhelming. Maybe I'll look for a gardening class somewhere...though there is a ton of information online...where to start? Anyway, I'll take pics in a few weeks once things take hold and start to look less pathetic...they always look so pathetic straight out of the little containers. The chives and onions are all floppy, but I'm sure everything will perk up soon!

My platelets are under a million!

Yippee Skippee! I just got my results back and everything else is normal. My platelets have been over the million mark since I got checked on July 21st, and though I'm still in the "way too high" range, I am no longer in the "oh my god, I could have a stroke any minute" range. At least I hope not (knock on wood folks, in case I just jinxed myself!)

Needless to say, I will continue on my regimen of fish oil, vitamin E oil, aspirin and such (all of these decrease platelet clumping and basically "thin" the blood). Tomorrow is my second injection of interferon, so not sure yet if it's the interferon that's working or my body's amazing ability to "literally heal itself" (to quote Michael Scott...name that episode and win a prize!).

In other news, I may have a broken toe. I bashed it up pretty good and it's an unhealthy shade of purple. I went to get an x-ray and will hear tomorrow if it's broken or not. Nonetheless, I had to call in sick for tomorrow as I can't be on my feet with a maybe broken toe...it hurts!

Wish I could celebrate the platelets with a glass of wine...guess I'll settle for a glass of green juice instead...

On a mission!

I am now on a mission to get as healthy and toxin-free as possible. TaDa!

How am I accomplishing this huge task, you ask? Here is my evil plan:
-Detox diet for 7-21 days (depending on how long I can stick to it...I'm on day 1)
-Following the detox, adopt a healthier diet overall (whole foods, mostly raw; lots of green juice!)
-Get rid of all toxic and chemical-laden household products (almost there, still gotta use up some laundry detergents and a few other things)
-Replace amalgam fillings with porcelain (this is in the works...have to get two regular fillings done, then I'll start the replacements)
-Oral chelation therapy (aka: metal detox) as I am getting the fillings removed, this will necessitate the next item on the list
-Consult with a naturopath (free 15-min phone consultation is tomorrow morning)
-Exercise more (I got on my bike the other day...woo hoo!)
-Filter my water (done...bought a filter yesterday)
-Get plenty of rest (usually not a problem for me at all!)

So far my evil plan is going well...started a detoxifying cleanse diet today...here is a picture of my juicer in action...that purple stuff is red cabbage which is the base for a very tangy juice featuring cabbage, celery, apple, lemon, lime, kale and ginger. It is sooooo good!

Ok, off to dinner with a friend (farm fresh and organic, of course!)

Hugs,
Mo

Pegasys Injection Numero Uno

I took my first dose of Pegasys last night around 8pm. Other than being ready for bed at 9:30 (which is my usual time anyway), I have felt zero side effects. ZERO! I was told by one of the nurses I met with yesterday that the side effects may not kick in until the next dose...so I guess I shouldn't get too excited yet. I eve =n went for a 17-mile bike ride this morning, and actually felt great!

Next week will be the real test, as I have to work both Friday and Saturday. Keep those fingers crossed!

In other news, I am going to make some onion rings in my dehydrator today...well, I'm going to start them today. Dehydrating takes a looooong time. Trying a new recipe, so stand by :-)

Hugs to all!
Mo

What's on top of my strawberries?

Why, it's a 2-month supply of Pegasys. Woo hoo! I am taking my first dose tonight around 6 or so, accompanied by Tylenol ATC (around-the-clock) for the first 24-hrs to help alleviate the flu-like symptoms. So...stay tuned for more, and wish me luck!
Mo

Awesome Day at Work!

So...in non PV-related news, I had an awesome day at work today! I took care of two patients (one sick and one not-so-sick). The not-so-sick one was an adorable older gentleman, while the sick one was trying her best to keep me on my toes! At one point her BP skyrocketed from the 120s to over 200, while her heart rate dropped waaaaay down. Then, later on...she decided to raise her heart rate sky high and drop her pressure. It was a wackadoo day, let me tell ya. We got her somewhat squared away, though...hoping she doesn't give the night-shift RN too much trouble. Needless to say, I was G-L-A-D to be done for the day!

Annnd, this may sound goofy, but I got to help a co-worker out today! I am finally getting familiar enough with things that when someone needs help I can be somewhat useful. This is HUGE in the ICU, as we rely on our colleagues so very much. It's been very important to me that I be a contributing part of the team and I'm starting to feel that way...even if it's just a little bit at a time.

Speaking of work, I am moving to night shift in four weeks or so. I guess it's inevitable, so I might as well welcome the idea. More details when I'm not so freakin' tired!

Hugs to all!
Mo

The Debate Continues...

I have been researching drug options like a madwoman the past weeks, trying to figure out which is the least evil. Seems there is a bit of debate amongst the experts, with conflicting studies galore and a lot of usage of the phrase "large-scale studies recommended." UGH!

Here are the two front-runners:
Hydroxyurea: The mainstay of PV treatment, HU (as it is called amongst the online community of PVers) has been linked to the development of cancers, plus has a bunch of nasty side effects. It's cheap and commonly used, so many docs are comfortable with it. I'm not so sure I am.

Pegylated Interferon alpha-2a: Once-a-week injections of a protein that occurs naturally in the body (well, we have interferon in our bodies, not entirely sure how similar this is to that, but at least it's in the same zipcode). Anecdotatal reports of the side-effects range wildly, but that may be because the dosage can range wildly as well. This drug has been used for years to treat Hep-C and has recently enjoyed a renaissance as a med for younger patients with PV. Why younger patients? Because it has shown the ability to cause complete remissions and even REVERSE the mutated gene. Side effects are mainly flu-like, but it was reported that it was well tolerated at low doses by a test done in Texas.

I printed out a bunch of studies to take to my doctor's appointment today. Stay tuned!

Hugs to all!
Mo

p.s. Got labs done yesterday. RBCs were down (despite not having any phlebotomy, which is kinda weird), platelets are still on the climb. Darn platelets. Need to talk to doc about why RBCs are down though...that is odd and is hopefully not a sign of ominous things. Think happy thoughts!

Interferon!

As ya'll can see from my previous updates, I haven't been too excited about the two drugs my doc mentioned. So, like the good patient advocate that I am, I researched things on my own and came across some studies for a drug called Pegylated Interferon (the pegylated part has to do with what it binds to and it's ability to stick around in the system longer...so you only have to take it once a week).

For the geek in all of us, here are links to two abstracts:
http://www.ncbi.nlm.nih.gov/pubmed/19826111
http://www.ncbi.nlm.nih.gov/pubmed/18650451

So,what does this mean in good ol' plain English? Well, this particular drug has been used to treat hepatitis and some smarty pants decided to see how it would work with people who have PV...perhaps because one of the side effects of the drug is bone marrow suppression (which is exactly what us PV folks want!). In many patients it created a COMPLETE REMISSION (or "complete response" as the abstract states), and in some cases it REVERSES the gene mutation! Holy Cow Batman!

Anyway, I emailed the studies to my doc and he responded right away that they looked very promising. We are planning to meet on Monday, so let's cross fingers that he's done some more research and can get me on this drug (and that it works, of course!).

In other news...planning a brunch for a few friends on Sunday (and yes, we're going to eat outside in the semi-madeover backyard if it's not too hot). Cleaned out the fridge today, found a bunch of healthy stuff I had forgotten about in the cabinets and managed to fit my dehydrator AND juicer in the kitchen! Hoping to start doing more raw-foods, and having a permanent home for the ol' dehydrator beast should help.

Gotta get back to work!
Hugs,
Mo

All by myself....

I have that song running through my head...All By Myself.....lalala. Why? Because I am going to spend the night all by myself for the first time since this diagnosis. Hopefully I'll be able to sleep, though of course, I'll be waking up every two hours as is my norm. Not planning to sleep through the night until the platelets are below 600,000. Anyway, just reporting in...wish me luck!