MS, PML and other fun acronyms

Well, the time has come to make a decision. A very important decision. Perhaps, a life and death decision. I have been living with Multiple Sclerosis for 16 years and I would have to say that it has, overall, been a pretty easy journey. I have always been happy, if not thankful, that God chose this cross for me to bear. There are a lot worse things than having MS. Don't think for one minute that I don't know that.

Over the years, I have tried all kinds of treatments and drugs to combat the devastating effects of this (lovely) disease! In the very beginning, I chose positive mental attitude (PMA) and prayer (otherwise known as OYK - or "on your knees"). That was followed up with a dose of better eating, lots of exercise and a bottle of bleach. It was great: I lost weight, I embraced my "inner blonde", I felt like a million bucks! I truly felt like MS had been a wake up call to live a better life! The life that God had intended me to live! Apparently, God thought I looked better as a blonde too!

A few years later, I started experiencing some numbness and balance issues. My doctor wanted me to consider Avonex, an intramuscular injection self-administered once a week. The only caveat was that they don't recommend getting pregnant while on this drug. My husband and I discussed it and decided that we should try for Baby #2. We'd give ourselves 6 months and if I wasn't pregnant by summer's end, we would close that door for good and I would begin my new treatment. Well, as luck would have it (just kidding, I know it was all God!) we were pregnant by Memorial Day! We were thrilled! AJ was going to have a little sister and our lil' party of three was about to become a foursome!

Marlee was born in January and just a few weeks after she was born, I began having exacerbations which would cause me to lose my balance more easily and my limbs to go numb. I remember being thankful that I was in a season of my life where I was almost always sitting on the couch (nursing) or pushing a stroller or grocery cart so, that I could sort of "fake" it if I needed to! But, I knew I needed to get started on my treatment ASAP! I knew that this meant I needed to wean my baby sooner than I had planned and get serious about fighting this fight. (Studies show that the sooner a person with MS starts treatment, the better their prognosis.) It was a tough decision but, time was not on my side and I had to act fast!

For several years, I was happy with the Avonex. Thankful, again that there was a miracle drug on the market and even more thankful for a husband that wasn't afraid to administer it! He will always be my hero for rising to that occasion. Our wedding vows had said "in sickness and in health" and clearly, he had meant every word.

But, like all good things, it came to an end...an MRI showed new lesions in my brain and my doctor wanted me to "amp it up" where my treatment was concerned. So, we switched to Rebif, another shot type drug but this time, instead of intramuscular, it was subcutaneous (which meant just below the skin) and was to be administered not once but, 3x a week. Oh joy!

Rebif worked for quite awhile, probably 5 or so years. But, in early 2011, I started experiencing dizziness and vertigo, rendering me unable to work and drive, limiting my daily functioning greatly. Again, my doctor ordered an MRI, got me started on multiple days of steroid infusions and started talking to me about this new drug called Tysabri. Tysabri was a once a month IV infusion that had seen great successes but, unfortunately had also seen unfortunate outcomes. Several people on the drug had died from a rare brain infection called PML or progressive multifocal leukoencephalopathy! Phew! Aren't you glad they just call it PML for short?! Anyhoo, the idea of a once a month IV (or as I like to call it "a mommy time out") sounded fabulous! No more shots! No real side effects to speak of, well other than the possibility of that "PM-whatever it was" so, I jumped on that train faster than a sneeze through a screen door!

So, I have been living happily ever after on Tysabri ever since!

...

If only that was the end of the story.

A few weeks ago, my doctor ordered a few routine blood tests and another MRI. The MRI, thankfully, came back very good - no new lesions! Yay me! However, they also tested me for the antibody that causes the JC Virus, which is a major player in this whole PML Russian Roulette game! And, I tested positive.

So, back to that decision that I have to make. My doctor wants me to consider going off of Tysabri and try a new oral pill (taken twice daily) but, I'm not so keen about the side effects or the stuff that is in the pill. It is made from a chemical that has been used in furniture cleaner! What?

I, on the other hand, am not so ready to jump off the Tysabri Wagon just yet. I actually look forward to my monthly infusions as it is seriously one of the rare times in my busy life that I get to recline in a chair, cover up with a cozy blanket and either close my eyes or do a crossword, read or just chill for 2 hours! It's about the closest thing to a spa day that I get on a regular basis!

Besides that, here is what I do know:

I know that testing positive for the JC Virus puts me at a much higher risk for developing PML (1 in 500 I am told) but, I also know that there are other MS patients who continue to take this drug even after receiving a positive result.  I also know that I feel 100% better since I've been taking Tysabri than I ever have while living with MS. I know that life is unpredictable in and of itself and I am willing to take my chances. I know that the God that I believe in already knows how my life on earth will end, and if PML is part of His plan, then so be it. I know for sure that I would rather live a more quality life right now than to have a life where I wasn't able to enjoy the things I enjoy doing. It's about living in the NOW. Yes, I am worried about the possibility of developing PML but, what scares me more is picturing my life without the strength in my legs to run a 5k or the vision to see things clearly and be able to do the work I love. Tysabri has given me a new lease on life and it would be awfully ironic if the very thing that saved me, ends up killing me. But, then again, God works in mysterious ways and who am I to second guess Him?

*on a side note, I love the book Jesus Calling so much that I have it programmed into my phone under the acronym JC so, every time  I typed in those two letter that is what popped up! Kinda funny! I just hope it doesn't mean "Jesus is Calling me home!" Not just yet anyway!

life's little luxuries

It's true what they say. It's the little things that really matter. I just read one of my favorite blogs by Kristin Armstrong (Mile Markers on the runners world website). It was all about little luxuries and it made me stop and think about what my little luxuries or escapes from the chaos of my life are...

I decided to jot down a few in my journal and ended up filling an entire page (probably could have written much more!) below are a few of my faves...

Bubble baths. Chamomile tea. Fuzzy socks. Firepits. Perusing Goodwill. Cold Chardonnay and crab. Walking in the snow. Monday crosswords. Waking up before the sun. Making lists. Crossing off lists. Crafts. Perusing Pinterest. Taking photos. Pike place in my keurig. Sitting by the fire. Writing letters. Reading blogs. Hiking. Pedis. Bloody Mary's. Tailgating. HGTV. A crisp fall day.

It is actually therapeutic to write down all the things that make you feel content and bring you joy - those little things that make you tick!  Sometimes the most mundane or ordinary things can do just that. When we think about the limitations that some people face wether it is physical or cultural or by their own choice, it really changes our perspective. It makes us stop and realize just how blessed we truly are.

"Enjoy the little things in life, for someday you will look back and 

realize that they were the big things."

What are your little things?

Back to school faves

 Ahhh...Fall! My favorite time of the year is just around the corner! And with that comes 

Oregon Duck football games, pumpkins, cooler days, boots & knee highs and Back to School! 

I wanted to highlight some of the other things I am excited about as we enter the new season.

Sort of an "Aunt Fab's Fall Finds" if you will.

Here goes:

 My Rolling Cart ($30, Staples).

I love this thing!! I can put everything I need in it for my work day (lunch bag, lesson plans and materials, etc.) and then, just roll on into work with ease! In addition, I added a little caribeaner (a couple bucks for a pack of 3 at Storables) to hang my purse on and a cup holder ($1.79 at IKEA ) for my morning latte! This way my hands are free as I negotiate my keys into the building...

 My closet organizer ($14, Target).

I actually stole this idea from my 13 year old daughter!

She lays out her outfits for the week and it makes it so much easier to get dressed in the morning.

It has just enough shelves to plan a week's worth of outfits!

Single serve coffee maker ($44.95, Eagle Bargain Outlet).

I am so excited about this find!!!

I have been looking all summer for one to have at work but, they were $70-90 

and I didn't want to pay that much!

I came across this one at an outlet store in Portland and it was the only one like it on the shelf! 

I guess they get items that have been returned and they cannot sell in the stores so, 

they are marked down quite a bit...

Yahoo!

I even found some discounted K-cups to use in it!

54 pods for $27! What a deal!

I should be set with coffee 'til Thanksgiving break!!!

 Okay, here's another idea I got from my teenage daughter

 (from all the you tube videos she watches!)

It's a Mason Jar Salad...and it is so fun and easy to pack for lunch -- 

not to mention, super healthy!!



All you do is layer your salad makings (putting dressing on the bottom 

so the lettuce doesn't get all soggy!) and then put the lid on and pack it in your lunch box!

When you are ready to eat, turn it upside down and 

shake all the ingredients together and pour in salad bowl!

So yummy!!!

HAPPY FALL!!

Eugene Half

It's been almost a month since I ran the famed Eugene Half Marathon that I've had on my bucket list for some time now. It was the BEST and the WORST race I have ever run!

The best because I got to run it with my awesome husband (we are both Ducks!!). I got to run past some very cool and meaningful places (my old dorm, my son's fraternity, Autzen Stadium, etc.!) 

The best because I got to finish on the historical Hayward Field, the same place Steve Prefontaine trained and where Ashton Eaton broke some records!

But, the very best part was running the race for our dear friend, Missy who is running her toughest race. Against cancer. It was my husband's idea to dedicate our race to Missy (she lives in Eugene and is a fellow Duck!)

 I had heard of people doing "prayer bands" during long races and dedicating each mile to a certain prayer, petition or person. I loved the idea so, I took to the internet and googled the idea! One great suggestion I found was to grab some pace bands at the Race Expo (Usually the ClifBar booth has them). Well, with neither my husband or myself being competitive or fast, we had NO idea what a pace band was actually used for, but we were very happy to turn them into our prayer bands for  sweet Missy!

Here's what they looked like. Each mile was a different prayer for our friend. Courage, Strength, Healing...13 prayers in all. I later told Missy that I was a little selfish with some of the prayers, particularly Strength, when I hit Mile 9 and a huge hill. She didn't mind one bit that I "double-dipped" that mile's prayer!

So, why was it the worst?

Well, for starters, I did not train as hard I had for my previous two halves. I think my longest run was somewhere around 8 miles. I remember asking one of my "running mentors" if he thought it'd be okay to skip the longer runs and he said, "It just depends on how sore you want to be!" And, boy was he right! I felt really good up to about Mile 7 and then my body started retaliating -- especially my knees! I have never had problems with my knees before, but this was an excruciating pain! 

All I could think about was crossing the finish line at Hayward Field and prayed that my legs would carry me that far! I no longer cared about my goal time of 2:30 but, rather just about being physically able to finish the race, get my medal and my well deserved pancake! 

(The race is sponsored by Krusteaz!)

In the end, I finished in 2:36:22 and my husband beat me by 3 minutes (who did not train at all, by the way!) I did not set a new PR, I had, however, just set a new record for the longest I'd ever run at one time and that felt pretty good! I was so happy to be done that I was on an emotional, adrenaline rush for the rest of the day! I had accomplished a very special goal and had run a very special race!

Yep, that's what I did!

this is 145

145 pounds. No matter how much I diet or eat or run or don't run, my scale somehow always ends up at this magical number. I guess that is just where my body settles and I'm okay wih that. My friends often tell me they can't believe I weigh that much (which I have always taken as a compliment, sort of!) Apparently, I have heavy bones or a lot of muscle! Or maybe both! So, you wanna know what 145 feels like?

It feels like waking up at 530am most days of the week and heading out for a run or fitness workout.

It feels like being able to run 13.1 miles all at one time without dying (or better yet, barfing. Or stopping.)

It feels like being strong enough to work 7-8 hours a day at a physically and mentally tough job and still have something left for my family at the end of the day.

It feels like maximizing your weekends by hitting the slopes, hitting the bar AND making it to Sunday morning yoga and Sunday night church.

It feels like visiting your son at college and feeling like YOU are the college student!

It feels like looking MS right smack dab in the face and laughing, while saying "Oh, and you thought I'd back down? Ha! Obviously, you haven't met me!"

Yeah, so that's what 145 feels like.  Strong. Confident. And Tough.
I would happily take that any day over  125 pounds of "Not-so-sure-if I-can-hack it"!

BOOM!!!

Oh, and just in case you are wondering, this is what 145 LOOKS like...

145's Not so bad, right? Well, truth be told I originally wrote this blog about 6 months ago, shortly before menopause took ahold of me and shook me to my core. And now, I am fighting to stay below 150! Oh, what I wouldn't give to weigh 145 again!!

Oh well, as long as I can approach my 50th birthday with strength and determination to be the best I can be, I'll take 145, 150 or beyond. Afterall, it's just a number!

And I've never been one to let a number define me.

B.O.D., Baby!

Lately, it seems as if I have been on the defense an awful lot. It's as if every time someone says or does something, I automatically jump to the conclusion that they are out to get me. It's ridiculous, really and I don't like it. Not one little bit.

So, I did what I do every time something is troubling me - I prayed about it. After mulling it over with Him, I came up with this idea: every time my mind starts to go to that dark place, instead of thinking the worst, stop and give that person the benefit of the doubt. Maybe they don't plan their day around making my life miserable, maybe they don't wake up in the morning and say "I really want to mess with her " and maybe, just maybe, they didn't even stop to consider how their actions would affect me at all. Maybe people are basically good and honorable and just. Maybe they don't have a secret agenda. Maybe some people don't deserve the benefit of the doubt. Give it to them anyway!

So, I have begun to train myself to give others the benefit of the doubt - or B.O.D.as I like to call it! When my mind wanders, I immediately think or say to myself  "B.O.D., baby"! It somehow takes the sting out of it and I find myself chuckling to myself and suddenly whatever it was that was bothering me is now forgotten and I've moved on. It no longer has the power to upset me because I have taken away it's control. It's actually pretty cool!

I remember reading somewhere that you should treat everyone you meet with kindness because everyone is fighting some sort of battle you know nothing about. So, the next time someone pisses you off in traffic, imagine that they are headed to the doctor's office to get a second opinion on their cancer or the next time someone is rude to you, imagine that they are pre occupied because they just received some horrible news. Life is short. Don't go through it mad or angry or resentful. Just give others the benefit of the doubt. It will add immense joy to your life and maybe even a few years!

"Train your mind to see the good in every situation"

no good deed

If ever there was a saying that rings true, it is this one:

"No good deed goes unpunished!"

It happens to be one of my husband's favorite sayings - and even though I had no idea what it meant the first time I heard it, it is now one of my favorites as well. Because it just fits so many situations!!

Here are a few scenarios that describe it a little better:

•My good friend teaches Sunday school at her church/One evening after teaching. she slips on ice in the parking lot and breaks her wrist.
•My husband picks up flooring boxes that blew out of a neighbors garbage can on a particularly windy morning and puts it in our garbage can/Another neighbor later berates him for not doing a better job of securing "our flooring boxes" in our garbage can.
•I offer to drive my daughter and her friend to the mountain/I roll my car on the way home.
•You run in a charity race/You get run over by a bus.
Okay, so that last one didn't really happen...but, you catch my drift, right?

Well, recently I experienced my own kind of "good deed punishment"!! I recently bought tickets for my daughter and I to see one of her favorite "you -tubers" perform live. I decided to splurge and buy the V.I.P tickets so, we could have better seats AND meet her after the show!! Later, I invited my niece to the show but, there were no V.I.P. seats left so, I just bought her a G.A. ticket, figuring she wouldn't mind since she really didn't know the performer anyway.

When the day of the show arrived, my daughter and my niece were so excited and it became clear to me that they needed to have the V.I.P. tickets! I mean, I didn't really need to meet and greet this 20-something "you-tuber" but, the two of them would have a blast posting pics to Instagram and telling their friends! So, I happily gave them the tickets. Unbeknownst to me, V.I.P.ers got in 15 minutes early to the show. So, I waited in line with them and once they were let in at the door, the ticket collector informed me that I needed to get back in line and wait with the other G.A. folks outside. Okay, no problem. How bad could it be? Well, just as I walked outside, the skies opened up and it began to pour. Down. Rain. I was suddenly wishing I'd packed an umbrella or at the very least, a garbage bag to put over my head!! I was suddenly reconsidering my decision to wear sandals and capris (to show off my new pedi and tan from spring break!!) Ugh. As if this wasn't bad enough, I saw that the line wrapped around. A. Huge. City. Block! So, there I was standing on a street corner feeling just a wee bit sorry for myself!

The only thing I could think of as I stood there with raindrops bouncing off my OPI bubblegum toes, was "no good deed goes unpunished!" I took a selfie of myself standing in the rain with a sad face and that very caption and sent it off to my husband! He knew exactly what I meant!

mary

I go to the public swimming pool once a week. as part of my job (working with special ed kids). A few weeks ago, I met a gal named Mary in the locker room! I liked her immediately. She was spry. She was witty. She was sharp as a tack. And she is probably around 85 years old, give or take a few years! We chatted and laughed like old friends. I saw Mary again this week and I still can't get the image of her out of my head.  She stood there, next to me, completely naked, just chatting up a storm, meticulously drying herself off. She laughed as she did, saying, "my skin is too big for my body now!" A huge smile in her voice and on her face. You see, I was trying hard to look at her face, not at the naked body beside me! But, part of me just wanted so badly to look at her body, to get a glimpse of what I might look like in 40 some years! I've never really seen a naked 80 year old, so I was curious! I finally lowered my eyes to take it all in and all I could think was "Man, I hope I look like that when I'm her age!" I think what I was actually thinking was "God, I hope I live to be her age and have the kind of confidence she has!" I mean, I still drape a towel modestly around myself when I dry off in an all-women's locker room and here she was, just letting it all hang out! And I do mean "letting it all hang out"!!

Standing there, talking with Mary and trying not to gawk, I realized something. I realized that we women spend our whole lives, not to mention our hard earned money to look good, to appear younger and to stay in shape...but, someday, we will be Mary's age and what will it really matter? Will it really matter that we gave up carbs for months on end only to end up gaining all the weight back anyway?Or deprived ourselves of delicious treats just to fit into a bikini for that vacation? Will it matter that we did or didn't get that boob job? Or Botox? Probably not. The point is that we are so hard on ourselves, constantly striving for that perfect ideal, that fountain of youth that we fail to realize that real beauty lies in a life well lived. A body that has withstood all of life's battles and storms and is still standing. A face that reveals a joyous, happy life, complete with the smile lines to prove that you laughed a lot! I honestly had never seen anything quite as beautiful as what I saw in Mary that day.

"Real beauty isn't about symmetry or weight or make up, it's about looking life right in the face and seeing all of its magnificence reflected in your own. " -Valerie Malone

Today's waves

I was reading my daily devotional, Jesus Calling the other day and this passage totally struck me. It was talking about not looking too far into the future and letting God do His job. Now, I've heard this put many ways before bit, somehow this time it really made sense and stuck with me.

Here is the passage:

"there are treacherous looking waves in the distance...by the time those waves reach you, they will have shrunk to proportions of My design. I am always beside you, helping you face today's waves."

I love the whole visual of this! Staring out at the ocean, looking at the giant waves and imagining them crashing up against the shore and swallowing you up! When we obsess about the future, that is exactly what we start to feel like. Stop. Slow down. Breathe. And let God do His thing. I read this a long time ago and it has always stayed with me: "worrying is taking on a responsibility that belongs to God." I don't know about you, but I don't want to step on the Big Guy's toes!

I started thinking about this idea and how it relates to every single aspect of my life. First of all, my MS. If I were to sit and worry about my future with this disease, I would surely succumb to debilitating fear and not want to get out of bed each day. Instead, I choose to take it a day at a time and trust God enough to handle it when the time comes.

Secondly, my running. I am signed up for a half marathon in July and frankly, the idea of running 13.1 miles again scares me to death! But if I focus on "today's waves" and put in my time training, I will be able to reach that goal when the time comes!

So, I guess the moral of my story is to stop worrying, concentrate on what you can do today and leave the rest up to God. He's got this!!

My Mean Clean

So, I'm doing The Game On Diet for the 4th time. (See June 25 blog for more on that). One of my favorite things about this plan is the good/bad habit. At the beginning of the diet you must pick a bad  habit to give up and a good habit to start...and do it everyday! If you fail to do them, you lose 10 points a day and if you change your habit part way through, you have to take a 50 pt. penalty so, it's pretty important to chose well.

This time around I am giving up complaining and negative talk. Just like the saying "you are what you eat", I believe "you are what you speak." I read in The Happiness Project, that if you share something negative about someone else, you will actually be associated with that thing yourself. Scary, isn't it?

I don't think of myself as a chronic complainer, in fact I pride myself on being fairly optimistic...but, when I told my 12 year old daughter that I was considering giving up complaining for 28 days, you would have thought I'd just bought her a $500 gift card to Sephora! (Apparently, I'm not quite as balanced as I'd like to think I am!)

My goal is to rid myself of any negative talk or thoughts. I don't want to waste another minute thinking about things that do not bring me joy or worrying about what others think of me. I don't want to utter a single word about another person unless it is pleasing. I want to think and say positive stuff only! After only 4 days of doing this (and taking point deductions 2 of those 4 days), I have realized just how hard this is and how much I do complain - it has been very eye opening!!

I have finally told my husband not to tell me about the (ahem, stupid) things he does because it can only lead to my complaining or worse, berating. I just don't need to know. At least not for the next 24 days! 

All kidding aside, I think abstaining from negativity is just as important as abstaining from sugar or alcohol...it poisons your soul and hardens your outlook on things. Life is so beautiful if we would just look at it through different lenses once in awhile.

Pretty powerful, huh?