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.

A New Normal

Ok, best just to push this out to the world once and for all and be done.  This blog is a little raw as I wrote it with a million emotions raging so you are now forewarned.  Two weeks ago my feet both went numb so I tried, as I had before to work on my spinal alignment which seemed to help in the past.  This time it didn't not help, and after about ten days it actually got worse to the point where my legs went numb all the way up to my navel.  I won't lie, it had me pretty shaken up.  I had a pretty good idea what was going on...

On December 23rd, 2012 I started having a sensation so anytime I looked down a zinger would shoot down my back to my feet.   I guessed that I had a pinched nerve due to holiday stress and couldn't see anyone about what was going on until after the holidays.  I went and talked to my Dr once we were back from Christmas travels and she mentioned it might be MS.  What I had was L'Hermitees Sign which is very much an indicator of MS but I had hope that wasn't the case.  She didn't push me to get scans and let me work through things on my own.  My massage therapist at the time as well as another chiropractor all agreed MS was a possibility. Jan 6th I saw a chiropractic specialist that a friend and my accupunturist both recommended.  Over the next couple of months the stingers went away, the mild numbness I had had in my hands off and on since I was pregnant with Joshua went away once and for all, and I thought hmm maybe it was just structural after all.  Added bonus, he got my back and hip mostly patched back up so I could run again. 

That story and a talk about alternative medicine options I will save for another day.  Fast forward to July 5th.  I went out for a bike ride with my husband, who is a total animal on a road bike.  It was my first big training ride with hopes of picking up the pieces of my second crappy triathlon season in a row.  I was ready to race again, but pretty sure I was going to get dropped and as Joe was pulling ahead I got distracted and crashed into a trail endpost and flipped over the handle bars.  Almost no road rash to speak of so I was really luck to just be banged up and have a cracked helmet.  Afterwards I rode the four miles back to my folks place because I am apparently delusionally tough headed.  Turns out my aerobars and the asphalt had a much deeper impact in this case.  I was black and blue all over for a couple of months and the numbness in my feet started trickling back into my life.

This time I was not as lucky.  Every time I swam my feet would tingle, which I have to say really sucks because swimming and yoga have always been my fall back activities.  It persisted and my chiro recommended going in for an MRI, so back to last week.  On Monday I saw my regular doc and she gets me in for an MRI of my cervical spine (well that isn't what she ordered but that is what they did anyway.)  I was grateful that scan was in the 'open' MRI which is really only wider instead of a tube.  The results weren't great.  A plaque showed up on my spine (damage from the disease to my nervous system) and I was able to get a super quick appointment into see my fourth neurologist in three years (again another story for another day) and he agreed more scans were needed as I was showing other symptoms.

So back into the tube they sent me for a head and spine MRI with contrast.  This time the scan was on Friday morning and I had to wait until Tuesday to see the neurologist.  He confirmed my fears once and for all.  I have Multiple Sclerosis... that is right folks good 'ol MS.  (For more information on MS see the end of this blog )I believe I told my Dr when she asked how I was doing with the news "that is really fucked up!"  Let me be honest here... I am scared to death right now.  I am afraid I will be a burden on my family before it is my time to burden them.  I am afraid I will end up with one of the two kinds of MS that don't really respond to medications. (Right now my Doc says I have RRMS which is the best kind to have if there is a good kind)  I want to curl up in a ball and wail and curse the heaven's "why me?"

But not today...  I honestly am surprised really.  Three days into the diagnosis that I have a chronic, currently incurable disease, I am like bullshit if I am going to let this drag me down.  I am surprised at how well I am taking things.  I am at awe at the support family, friends, my triathlon team and even strangers have given me.  I am reading and reading and reading.  My neurolgist opened his cabinet and started handing me booklets 6" deep to read by tomorrow.  There are more and more treatment options for MS available every year.  How the hell I am going to figure out which one is best for me by 10am tomorrow morning I have no idea, so instead of reading more, I am writing this blog.

So why blog about it?  Success starts in my mind, and for me healing begins with sharing what is on my mind, ironically about what is going on in my mind.  I am lucky because this is a potentially manageable illness.  There are promising studies and research going on that lead me to have hope they will find a cure for MS in my lifetime.  I can do this!!  So what do I need from all of you?  Don't tell me you are sorry because I certainly don't need a pity party and quite frankly sorry comes across as a negative word to me.  I have hope that I can manage this illness and not let it define me. I will need your love, your kind words, and probably for you to tell me to suck it up and keep on marching when I have down days, or hard days and get discouraged and lose sight of my courage. 

Be kind to my family who are also struggling with the ramifications of my illness. I thank the higher power that I have my parents and most of all my husband who I can tell is as terrified as I am, but loves me so much I am tearing up as I write this because I am so very grateful to have these people in my life.  So I don't know what the future holds but I know I am going to kick MSs butt and come out better on the other side.  So with that I am going to hit the rack since I have a big day tomorrow.  Thanks for listening.

http://www.nationalmssociety.org/What-is-MS 

A video of "Shawn"

I recently submitted to be a sponsored triathlete with a local bike shop (Kyle's Bikes in Ankeny). Part of the requirement was to create a video about myself. While I made several attempts to make an actual film video I didn't feel like it was as interesting as what I ended up with.

Even if I don't get picked it was still fun to put together so I thought I would share with you. http://youtu.be/djFnxvcnDac
Let me know what you think. :) I'll up date this on the office chance I fit the bill.

As an update on this 1/21/14 I did get picked for the team.  I have the most triathlon experience (races, years, and age) of the six on the team.

30 Day Plank Challenge

A bunch of friends from FB are working through the 30 day plank challenge. I thought I would share the program here for anyone who is interested in giving it a try.

The idea is that you do a plank each day and build on your time each day with rest days built in. There are several ways to do a proper plank and it is best to start the program with which ever modification works best for you and your fitness level.

You can start with a forearm plank. Lay on the floor, place your forearms on the floor shoulder width apart, tuck your toes under and then left your body up. The focus to have a straight line from the top of your heads down to your heels. http://www.womenshealthmag.com/fitness/plank-exercise

The link above shows the progression and form for a forearm plank and then up to a full plank. The link also takes you through a progression for more complex plank moves. Side arm plank is a good way to engage different core muscles and can be done from forearm or straight arm plank start positions. Please be careful trying these until you have been doing plank for a while so you do not sustain an injury.

As with any new exercise routine you need to really focus on form and listen to your body. When you are getting started you may have a little shaking as your body adjusts to your muscles strengthening so it ok to push yourself to that point. Do not go to the point where you are straining yourself to hold the pose.

It is ok to mix different variations. You can do a forearm plank and go down to your knees for part of the duration. You can do the same with a full plank and go to your knees. You are still working your upper body and core just with slightly different muscles groups.

Give plank a try today.