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.

Listening... I will be your witness

Here is a post came across in my daily email links and thought I would share. I appreciate all the people in my life who are my generous listeners. I know I can be a distracted listener and am working on my patience and opening my heart to your words. I hope to repay you the same kindness and my you know that I am your witness. The link to this blog is at the bottom. "My mentor Dr. Rachel Naomi Remen, author of Kitchen Table Wisdom, spends a lot of time talking about generous listening in the programs she teaches such as these and in the Healer’s Art curriculum she developed for medical schools, which I had the privilege of participating in as a practicing doctor.

What is Generous Listening?

In Dr. Andrew Weil’s Integrative Oncology textbook, Rachel describes generous listening this way. “Simply listening to the experience of others validates its importance and weaves it more deeply into their lives. Most of us do not recognize the power of our attention and few of us can listen generously. As we listen we become busy considering things that concern us: do we agree with what is being said or not? Do we believe it? We listen competitively: what does this say about the person who is speaking and what does it say about me? Is this person more educated than I am? Smarter? More fortunate? More competent? And of course if we are health professionals, we listen to diagnose and to fix. But this is not the sort of listening that spiritual experience requires. Sharing a spiritual experience is always an act of trust and when someone trusts us with a story we need to listen not in order to agree or even understand but simply to know what is true for this other person. In witnessing it, we give it value and we make it more real for them and perhaps for ourselves as well.”

Generous Listening Heals

When she teaches us about generous listening, Rachel asks us to simply be present with someone as they speak to us. Even with as much experience as I have listening to patients, and now to my one-on-one visionary clients and unconventional patients, it’s amazing how quickly I notice myself veering away from generous listening in everyday life.

Every single one of us has the opportunity to be a healer every single day simply by practicing this art of generous listening. Here are the generous listening practices I use with my clients and try to use (not always so well) in the rest of my life.

Tips For Listening Generously

Be present. Live in the moment. If you notice yourself thinking about last night’s date or tomorrow’s business meeting, return to your breath. Feel your breath moving in and out. Be here now.
Make eye contact. Look at the person who is speaking directly in the eye. If this feels uncomfortable, try using a technique shamans use – look with your left eye into the left eye of the person speaking. Try to consciously look past the surface of who is speaking. See their soul. Witness their truth with magical eyes. When you stare into the eyes of someone while witnessing that what they say is true, you can change a life – or even save one. The healing power of this simple act goes beyond words. Try it today.
Don’t judge. Know that what this person says is true for them. Avoid the temptation to make what they’re saying about you. Their truth is their truth – period. It’s not your job to make it right or wrong.
Don’t interrupt. This is their time to talk. Check your ego at the door. This is not about you. Just listen. That’s all.
Open your heart to love. Visualize a pink light streaming out of your heart and into the other person. Feel unconditional love for this person. Make yourself a vessel for Divine love flowing through you. Make it your job to help the other person feel truly seen and heard. This is the best gift you can ever give someone.

When I married my husband Matt, I asked my BFF Katsy Johnson, who officiated our service, to read this quote from the movie Shall We Dance?:

We need a witness to our lives. There’s a billion people on the planet… I mean, what does any one life really mean? But in a marriage, you’re promising to care about everything. The good things, the bad things, the terrible things, the mundane things… all of it, all of the time, every day. You’re saying ‘Your life will not go unnoticed because I will notice it. Your life will not go un-witnessed because I will be your witness’.”

You don’t have to be married to someone to be their witness.

Try it today.

You just might discover that not only do you heal someone else, in doing so, you heal yourself.

Please share your thoughts. I promise I’ll be listening generously to you.

With love and an open heart,

****

Lissa Rankin, MD: Founder of OwningPink.com,

Read more: http://www.care2.com/greenliving/the-healing-art-of-generous-listening.html#ixzz1rZPU7OlG

Things Happy People Do Differently... how to be that person

An interesting article I thought I would share... I think am pretty solid with most of these however I certainly have to maintain my awareness to be successful. Wishing you all much happiness in life. Shawn

successify.net/2012/10/31/22-things-happy-people-do-differently/ It’s quite simple. Happy people have good habits that enhance their lives. They do things differently. Ask any happy person, and they will tell you that they …

1. Don’t hold grudges.
Happy people understand that it’s better to forgive and forget than to let their negative feelings crowd out their positive feelings. Holding a grudge has a lot of detrimental effects on your wellbeing, including increased depression, anxiety, and stress. Why let anyone who has wronged you have power over you? If you let go of all your grudges, you’ll gain a clear conscience and enough energy to enjoy the good things in life.

2. Treat everyone with kindness.
Did you know that it has been scientifically proven that being kind makes you happier? Every time you perform a selfless act, your brain produces serotonin, a hormone that eases tension and lifts your spirits. Not only that, but treating people with love, dignity, and respect also allows you to build stronger relationships.

3. See problems as challenges.
The word “problem” is never part of a happy person’s vocabulary. A problem is viewed as a drawback, a struggle, or an unstable situation while a challenge is viewed as something positive like an opportunity, a task, or a dare. Whenever you face an obstacle, try looking at it as a challenge.

4. Express gratitude for what they already have.
There’s a popular saying that goes something like this: “The happiest people don’t have the best of everything; they just make the best of everything they have.” You will have a deeper sense of contentment if you count your blessings instead of yearning for what you don’t have.

5. Dream big.
People who get into the habit of dreaming big are more likely to accomplish their goals than those who don’t. If you dare to dream big, your mind will put itself in a focused and positive state.

6. Don’t sweat the small stuff.
Happy people ask themselves, “Will this problem matter a year from now?” They understand that life’s too short to get worked up over trivial situations. Letting things roll off your back will definitely put you at ease to enjoy the more important things in life.

7. Speak well of others.
Being nice feels better than being mean. As fun as gossiping is, it usually leaves you feeling guilty and resentful. Saying nice things about other people encourages you to think positive, non-judgmental thoughts.

8. Never make excuses.
Benjamin Franklin once said, “He that is good for making excuses is seldom good for anything else.” Happy people don’t make excuses or blame others for their own failures in life. Instead, they own up to their mistakes and, by doing so, they proactively try to change for the better.

9. Get absorbed into the present.
Happy people don’t dwell on the past or worry about the future. They savor the present. They let themselves get immersed in whatever they’re doing at the moment. Stop and smell the roses.

10. Wake up at the same time every morning.
Have you noticed that a lot of successful people tend to be early risers? Waking up at the same time every morning stabilizes your circadian rhythm, increases productivity, and puts you in a calm and centered state.

11. Avoid social comparison.
Everyone works at his own pace, so why compare yourself to others? If you think you’re better than someone else, you gain an unhealthy sense of superiority. If you think someone else is better than you, you end up feeling bad about yourself. You’ll be happier if you focus on your own progress and praise others on theirs.

12. Choose friends wisely.
Misery loves company. That’s why it’s important to surround yourself with optimistic people who will encourage you to achieve your goals. The more positive energy you have around you, the better you will feel about yourself.

13. Never seek approval from others.
Happy people don’t care what others think of them. They follow their own hearts without letting naysayers discourage them. They understand that it’s impossible to please everyone. Listen to what people have to say, but never seek anyone’s approval but your own.

14. Take the time to listen.
Talk less; listen more. Listening keeps your mind open to others’ wisdoms and outlooks on the world. The more intensely you listen, the quieter your mind gets, and the more content you feel.

15. Nurture social relationships.
A lonely person is a miserable person. Happy people understand how important it is to have strong, healthy relationships. Always take the time to see and talk to your family, friends, or significant other.

16. Meditate.
Meditating silences your mind and helps you find inner peace. You don’t have to be a zen master to pull it off. Happy people know how to silence their minds anywhere and anytime they need to calm their nerves.

17. Eat well.
Junk food makes you sluggish, and it’s difficult to be happy when you’re in that kind of state. Everything you eat directly affects your body’s ability to produce hormones, which will dictate your moods, energy, and mental focus. Be sure to eat foods that will keep your mind and body in good shape.

18. Exercise.
Studies have shown that exercise raises happiness levels just as much as Zoloft does. Exercising also boosts your self-esteem and gives you a higher sense of self-accomplishment.

19. Live minimally.
Happy people rarely keep clutter around the house because they know that extra belongings weigh them down and make them feel overwhelmed and stressed out. Some studies have concluded that Europeans are a lot happier than Americans are, which is interesting because they live in smaller homes, drive simpler cars, and own fewer items.

20. Tell the truth.
Lying stresses you out, corrodes your self-esteem, and makes you unlikeable. The truth will set you free. Being honest improves your mental health and builds others’ trust in you. Always be truthful, and never apologize for it.

21. Establish personal control.
Happy people have the ability to choose their own destinies. They don’t let others tell them how they should live their lives. Being in complete control of one’s own life brings positive feelings and a great sense of self-worth.

22. Accept what cannot be changed.

Yummy spring and summer recipe with variations

With the moseying in of spring I thought I would share a fun recipe for the season. This is served cold so you can make it up in advance and refrigerate it for later.

This is one of my favorite recipes to make. Quinoa is a very high protein pasta like grain shaped like couscous. You can find it most inexpensively in bulk in a health food store or food coop and a cup made will feed a family of 4 for two meals.

I love to mix and match veggies and things that I have on hand to give the salad different flavors depending on my mood. Here is my version of a Greek Salad however I also like to give it a south west flare as well and have commented on substitutions below.

Greek Quinoa Salad

(serves 8) high in protein and vegetables.

Can buy Quinoa in bulk and throw in whatever veggies are fresh. A little goes a long way.
1 cup quinoa (find in health food or bulk food section of market)
2 cups water or low sodium vegetable broth
1 avocado chopped into ½ chunks
½ cup low fat crumbled feta cheese
6 – 12 kalamata olives diced
½ red, yellow and or green peppers chopped into ½ chunks
1 tomato chopped into ½ chunks
1 can of black beans
A splash of lemon juice
Seasons to taste (I use a little garlic and pepper)

Boil water/broth and add quinoa reduce to medium heat and cover 10 – 15 minutes
Fluff the quinoa once cooked and toss in everything else.

Goes great with salmon or other light fish like Halibut or Cod as well as lean pork.

Avocado, feta and olives can be swapped out with mushrooms, asparagus bits or corn to give different flavor mixes.