Big Changes - The Journey I Call Lent

Cool quote of the week "You can make it your excuse, or you can make it your story."  While this quote isn't about MS it fits so thanks for continuing to read my story.

So this post is about making my body a healthier place to live.  The first couple of weeks Joe and I consumed quite a few different MS book, read research links and shared stories from other MS survivors.  My favorite book so far is "The MS Recovery Diet - Take Control of Your Health, Change What You Eat, and Live Symptom-Free" because who wouldn't want to take control and live symptom free?

I read several other books that highlighted food choices, vitamins and supplements, and told stories of others like me.  I selfishly focused on people living "successfully" with MS because quite frankly, call it denial or determination, because I am not willing to go through an kind of major decline and am avoiding the "pity party group".  I am certain that no matter how this illness tries to progress I will find a way to keep on keeping on.

So after reading, note taking, and conversations I decided that I needed to go drastic with my change to support healing in the fullest way possible.  I made this decision with a caviat, I had Lent knocking on the door, basically giving me an out if I didn't think I could sustain the changes.  It is easy to wade into something like this with enthusiasm and then peter out when the going gets hard so I hope that won't be the case here.  I need to succeed in change for the sake of myself and my family.

For vitamins and supplements, my regular doctor and I ran some numbers.  I was already taking 2000mg of Fish Oil to help with inflammation in my eyes and muscles so check.  I was already taking a multivitamin that has a high dose of B complex and a minor dosage of Vitamin D.  She had me add 2000mg of Vitamin D as it is the most commonly mentioned addition to diet (looking forward to more sun time so Vitamin D will come naturally from nature.)  I also take L-Lysine to support my immune system (it is an herbal anti-viral) as the meds are known for reducing white blood cell counts and known for weakening the immune system.  I have been taking this one for a year and have managed to be illness free (knocking on wood.)

The last addition which I don't remember to take every day is a refrigerated probiotic.  This one is very important for me based on one of the symptoms that can flare up in me.  The MS when it is raging affects the nerves that allow me to control the push component of my bowels (no it doesn't mean I am constipated I just can't poop.)  So keeping my bowel health well maintained, eating right, drinking lots of water and taking my probiotic has me on a pretty good schedule so should I have a flare up again it hopefully won't be as bad.

All of these changes I will deem permanent.  On to the lenten promises... 47 long days of sacrifice.  First the easy one... Abby asked Joe and I to give up grown up drinks for Lent (No we aren't heavy drinkers but apparently our grown up drinking has made an impression.)  We compromised on drinking only one day a week on the weekends and aside from one extra night for me I have followed that promise. 

My second two promises to myself are part of trying to move to an MS Recovery Diet.  I largely cut out refined carbohydrates and refined sugars.  I gave myself a pass for Joshua's 5th birthday because ... chocolate cake!  It had been two weeks of healthy food leading up to this and sadly cake didn't taste as good as I remembered (this says nothing towards the chefs.)  This isn't easy with a dining room full of Girl Scout cookies and I have to be honest, about a week in I had a major craving for cookies but I ignored it and carried on.  So what does this mean exactly???  I have done a lot of reading on the magic of gluten free eating.  I have cut out 95 % of products that have wheat in them.  For the most part I steer clear of things that are breaded, have wheat (pasta, breads, etc) but have located a few choice gluten free recipes and sliced bread to replace our wheat pancakes and toast.  I am keeping these "gluten free" options to a minimum in that I generally don't imbibe each day but rather every two or three days so refined carbs are pretty much out of the picture.

So that brings me to no refined sugars.  I had gotten lazy in the months wrapping up 2013 and had put in a few pounds thanks to the glorious wonders of dark chocolate peanut m&ms, holiday sweets and the like.  I had gotten out of my healthier eating habits and look what happened... with sugar and stress I had a relapse.  So down with refined sugars, no soda, no Girl Scout cookies, no m&ms.  Aside from the two days surrounding the celebrations of JJ's birthday with cake, ice cream and yummy gluten free homemade cookies I have been 95% true to my pact.  I allowed myself a sinner Saturday indulgence of two homemade sugar cookies today, and also allow myself to consume one square of high quality, fair trade organic, 55% or higher coaco each day if needed.... because well, its chocolate and nuf said.

So, what do you ask, am I actually eating?  Most mornings I am making a smoothie to start my day.  It consists of a handful or two of kale or spinach, part of a cucumber or handful of carrot bites for my veggies.  Then add 1/2 or a whole cup of plain Greek yogurt, a handful of dates, a banana or two, and misc other fruit plus a handful of almonds.  This usually give me a couple of days of smoothie.  It is yummy, filling and packed full of things that are great for me.  If I need a day off I go for some fresh fruit, gluten free toast with almond butter, and/or a hunk of cheese and a boiled egg.

For dinner we have been having a bunch of wonderful meals (many pulled together by my awesome husband).  We have a new favorite of brussel sprouts and asparagus with a side of fish and some fresh fruit.  A spinach, sweet potato, and garbanzo bean soup.  Fish tacos with a mango/avocado salsa and tiny corn tortillas.  Salmon burgers and wild rice/baby portabella side.  Pork loin... and one of my favorite salmon quiche recipes from Pike Place.  We had one pasta meal with quinoa pasta, sauce and chicken meatballs.  Many of these dishes had steamed veggies or salads on the side.

As a plus the kids have given up sugary dessert except on the weekends (which is a habit I hope we keep) so it has been fun to come up with a healthy after dinner snack that is yummy.  Last night it was sliced apples with almond/peanut butter.  Yum!

This week I am looking forward to gluten free pizza/calzones, quinoa cakes, lobster dip bake, spaghetti squash spaghetti, Hungarian eggplant, etc and so on.  Lots of a really wonderful meals for the family to enjoy that in theory promotes my long-term health.  And for a bonus leftovers for lunch in-between days with kale/spinach salad.  The books recommend more food changes and a new book called Wahls Protocol written by a Dr with progressive MS who was able to reverse her disease with diet, exercise and a positive mind (I have the book but I am reading Madame Curie's biography right now as I needed an MS break.)

My head has been clearer at work the last two weeks although I feel a little bit scattered at home.  Another plus from all these dietary changes has been on the scale.  At the beginning of the year I weighed myself and also measured my hips, waist and bum.  I am down 8 lbs and nearly two inches which is an added perk.  I have been exercising regularly but that is a story for another day.  So the data continues to flow, Lent charges on for three more weeks and I hopefully continue to heal.

As an aside I just watched the move "forks over knives" and I highly recommend it.  It is along the lines of the changes my family and I are working to implement in our diets without going totally vegetarian.  It talks about a lot of the things that are wrong in the US with our diets, healthcare, subsidies, etc. and it worth the time to start to educate yourself about the issues.

Little Changes - Part Two

It's hard to beat a person who never gives up. 

~ Babe Ruth

The quote above resonated with me a couple of weeks ago so I wanted to include it.  While it may be true and I have no intentions of giving up, carrying the baseball analogy along, it is also hard to compete when you don’t know what you are up against.  At this point it is the unknowns, among other things, that have me a bit jammed up.

I think as a person dealing with a chronic potentially life changing illness… ha laughing at myself now.  My illness is clearly life changing and therein lies the problem.  On the outside, in my day to day efforts it appears as though nothing has changed in my life.  On the inside my body is conspiring against me.  A friend going through chemotherapy summed up what I am feeling in her blog.  It is like when you tap a tuning fork and then have it hum against your body, that is what it feels like in my body most of the time.  Like pins and needles without the pain.

So yes, I am still symptomatic.  Any kind of sustained motion triggers it such as a walk across the complex at work, swimming, riding my bike and especially running which drives the numbness into my back.  Every Tuesday, Thursday and Sunday I eagerly take my meds (2 ½ weeks in and up to the second dosage level) praying that this will stop my disease in its tracks. I know it won’t make the symptoms go away as they need to recede on their own.  Most symptoms come for a month, three months or up to a year depending on the nerve effected which is consistent with the things I experienced the last 18 months.  I am just over two months into this round and I wake up with hope that this will be the day I wake up and things are quieter in my body again.

This week got off to a good start.  I have consistently had tingles in my feet for the last couple of months but is seemed like things were finally quieting down.  However things started to go downhill on Wed and now not only am I having a flare up that sends tingles to my waist with the slightest volume of movement, my hands have also started to go numb again in my pinkie and ring finger.  It is all very frustrating.  I normally deal with adversity by just gritting my teeth and grinding through the task, but MS is a funny beast because it won’t let me just grind through. It knocks me flat if I try and forces me to idle.  Something I am NOT good at!

Keep in mind I am not conceding the war only this battle.  I am just finding that I have to slow down a bit, and keep working on getting my head right so I can stay positive and win the war.  Like I said at the beginning this, MS is an illness where so much is not understood.  No one seems to know why the meds seem to work to hold the illness at bay.  No one seems to know what causes MS, and no one seems to be able to pin point how the illness will effect one person versus another so I collect data on myself and compare notes with my MS friends and I march forward, with occasional imposed idle times (which I strongly dislike!)  I continue to have hope that the meds work, the symptoms go into remission and I can live a full life.

Little Changes, New MS Friends and a Big Leap - Part One

This post is part of a three or four post installment... (added note I have turned comments on for registered users)

For those of you new to my tale, I was diagnosed with Multiple Sclerosis Feb 18th, 2014 and confirmed to have multiple plaques and active disease on Feb 26th.  Here is what I have been up to for the last week or so since my last post.  

I know I told you last week I decided on an MS drug treatment so let me tell you about the meds and my adventure to receive them. It is called Rebif and it has been on the market since 1996, and was one of the only drug company's to do a head to head study with another injectable MS drug.  It gets pretty solid results so with that I decided to go for it.   

The prescription was submitted to Hy-Vee and the drug company on a Friday and didn't get submitted to my insurance until Monday.  I got a call that day from both MS Lifeline (the drug company people) and the Hy-Vee specialty pharmacy in Omaha that will be sending me my meds.  I didn't call the Hy-Vee folks back as they said they submitted to my insurance and it would take a few days to go through the preapproval process.  I did call the MS Lifeline people back and talked to Sean (a sign maybe) and he told me about their sharps recycling program (they make the plastics and needles into concrete), the travel pack (a small cooler with two solid ice packs to travel with my meds) and the sharps box which would both be coming later that week.  

I felt marginally better after talking to him but was still struggling with my decision to go the injection route when there are three perfectly good pill options on the market.  The travel kit arrived on Wed and I have to say by then I was having serious second thoughts about going the injection route.  I was really angry at that box and opened it and literally kicked it into a corner.   I wasn't any happier on Friday when the sharps container and return shipping package showed up.  I will tell you more in a later post how I got past this little issue.  

On Thursday I talked to the Hy-Vee lady, and was informed my insurance did cover the script when they submitted it and that I have a $15 copay which isn't bad for a drug that costs several thousand dollars a month.  Here is the bonus, the drug company has a program to actually pay the $15 copay for me but she has to submit that to them and was waiting until Monday the 10th to see if they were covering that for me.  I got a call Monday and asked her to ship it right over so I had a big box with a foam cooler and a month of meds on ice on my porch today. 

I am supposed to inject myself three times a week and have decided to do Sunday, Tuesday and Thursday nights.  Tonight is Tuesday so it is time for the big leap... I have a month full of injector pens in a box in the fridge ready for me.  They do what is called a tritration where for two weeks I take a 1/4 of my final dosage.  Then for two weeks I take 1/2 of my final dosage and on week five I go all in.  

I have set my calendar for a year of reminders as it is important to take the meds at the same time on the same days no matter what timezone.  And tonight around 8:30 I will pulled one out to warm to room temp, took an Aleve.  I had everything the directions said I needed (as I still have not heard from the MS Lifelines nurse and no more waiting) so two cotton swabs, rubbing alcohol, an injector pin (which proved highly engineered and took me a minute to figure out), an ice pack and a hovering husband later I was ready to go.

The injection was pretty simple, no burn (keeping in mind this is 1/4 of what I will be taking) and an ice pack later I feel pretty good about this as a "for now, to get me started" option.  I slept good, woke up normal (new normal that is) and the only thing that might be a minor side effect is burning thigh muscles today (but I did swum yesterday and do yoga the day before).  

My afterthought this morning is that I need to visualize the liquid in the injection as being healing liquid going into my brain and spine to heal the damage that is done and still being done by the disease.  I need to train my mind to heal me just like the meds.  Until next time when I share about my new MS friends, new healthier eating, etc.  Thanks for reading.

I am a sponsored amateur Triathlete!!!

I was hanging out with my family at the Science Center in January when the call came in.  Out of almost 40 submissions I had made the cut to be part of Kyle's Bikes (in Ankeny) 6 person triathlon team.  I am the oldest member of the team by about 10 months.  One of two women, one of four parents, I have the most seasons and triathlons under my belt, so clearly they picked me because they needed someone older and wiser and ... slower :)  I have to say I am pretty excited.

The first link below describes what I have signed on for and I am really excited to share with you all my adventures and triknowledge.  :)  I have triracer teammates who know a heck of a lot more about training than I do, but I know what works for a busy mom with eight season at three of the four races distances under belt so maybe I do have a couple of tricks up my sleeves.

http://www.kylesbikes.com/styled-13/index.html

The second link is the icing on the cake.  Because not only is my team an awesome group of individuals who unanimously voted to keep me on the team after my MS diagnosis, but we get to ride some wicked awesome bikes this year, race in some great gear, and have three race fees covered.
http://www.discounttrisupply.com/blog/join-kyles-bikes-triathlon-team/#more-2645

So follow along on our journey this summer.

Here are the races I am queued up for this year.  Obviously I will be taking things one race at a time, but I am still hoping for a competitive year like 2011 when I did my 1/2 Ironman.  If you see me out there in my Kyle Bike kit give me a shout out and get my picture so I have something for my race reports.  :)

• Volunteering with my kids at Hickory Grove, 
• Ames Hope for Hospice 5k(family event for us), 
• Copper Creek (my first time for this one), 
• Midnight Madness 5k (family event for us), 
• Bluff Creek, 
• Hy-Vee (might even make the 5150 race if I train hard going into Bluff Creek)
• Cyman, 
• Des Moines 1/2 Marathon, 
• Stam Chocolate run for charity (another family event)

My current training routine at my base is Sunday trainer ride in my basement (10-15 miles), Monday Core/Yoga class, Tuesday swim (1200 - 1600 yards), Wed Run (2-4 miles), Thursday swim(1200 - 1600 yards), Friday rest, Saturday run (2-5 miles) (or massage) or whatever works into my crazy mommy schedule but usually some combination of those workouts.  I am so ready for spring and running outside again... -7 in the morning just isn't working for me right now.

I will ramp up to add another run and bike once the weather is warmer and will be looking for buddies to train with and I am also looking for a race cheering session so let me know if you are interested.  With that I am signing off.  Catch you later!

MS - coming up with a plan...

Here is my version of what MS is... this is an autoimmune disease where a person's body starts attacking the protective coating around the nerves in the brain and spine.  It leaves little holes in the protective covering that show as plaque/lesions when imaged with an MRI.  The plaques can heal over time if the body goes into remission long enough.  If the illness isn't treated the plaques continue to be deposited and the nervous system continues to degrade.  With treatment the meds keep the body from attacking the protective covering so the body can heal the damage. 

There are 13 treatments on the market now that range from daily, every other or third day, or once a week injections, monthly IV, or twice a day pills all with horrible side effects.  Potential side affects include liver and thyroid damage, depression, flu like symptoms to name a few and often a second med needs to be taken to counteract the first med's symptoms.  Bottom line is the choices all pretty much suck however the likely hood of becoming symptomatic again in 6 months to a year with progressively worse symptoms and long-term damage really sucks more!!  Oh and the stuff costs between $5500 - $7500 a month and takes 5-7 days to get insurance preapproval so we wait...

I made the decision to start Rebif which is an every three day injection and is known for flu like symptoms, skin damage at the injection sites, potential damage to the liver and throwing my thyroid off along with symptoms of depression.  The other option I was considering is a fairly new twice a day pill which causes flushing and has a high likelyhood of causing severe depression.  Joy!  Sucky one or sucky two no matter because I have to make a choice and live with it until I make another choice...  At least Rebif has nurses to train me how to use the injector, a sharps program so all the biohazard waste can be recycled into concrete, and a really good website with information about MS.  Trying to look at the positive instead of all the negative that has had me really jammed up the last four days.

By taking a medication the disease can go into remission and the body can restore itself.  Prognosis also improves with a modified paleo diet (reducing refined carbs, dairy like milk and cottage cheese, adding lots more fruits and veggies, eating fish, taking vitamin D and fish oil, B12 etc.)   Clearly I also need to do better to manage my stress so will start working with my meditation and other stress reduction techniques (and if forced to... start saying no to more things.) 

I will continue with acupuncture treatments once a month to help with my energy levels, massage once or twice a month to work the stress out of my body (read really deep tissue here), and chiro adjustments to keep my back and hip from barking at me.

I also need to keep moving.  I have a full slate of running and triathlon races this season and I am excited to be back at it.  I have to be careful because spikes in my body temperature can cause symptoms to arise pretty much immediately so I am learning to carry water with me.  I will need a team of groupies with ice at my races to get me cooled down at the end but I will not let this disease take away the things that I love and triathlon is one of them.

I am working on figuring out a plan I can live with because right now it is all about me... or maybe it isn't... but anyway that is what I know today.