Life With Aunt Marge: Life With Aunt Marge: Merry Christmas and a Health...

Life With Aunt Marge: Life With Aunt Marge: Merry Christmas and a Health...: Life With Aunt Marge: Merry Christmas and a Healthy New Year! : I read an article that said the holidays can be especially difficult for tho...

Merry Christmas and a Healthy New Year!

I read an article that said the holidays can be especially difficult for those with M.S.  They suggested that a person simplify and rest, eliminating as much stress as possible.  Statistically,  most attacks occur during stressful times like these.  I spent the last month of this year torn between wanting to do all the things that my children were used to me doing and wanting to just do the minimum so that I could avoid celebrating Christmas stuck on the couch.  On the one hand, my husband, mother, friends are telling me..."You need to slow down, take care of yourself for the long run..." while others tell me.."Don't let multiple sclerosis define or change your life.  Those who work and play hard despite this disease just do better."  I'm not really sure how it will go for me.  I do know that my "new normal" is more tired than my old normal.  And when I'm beyond tired, I hurt, I spasm, my arms and legs go numb and  sometimes I cry.  All this being said..it's time for a new year.  What will my resolve be?  To take it easy or take it to a new level?  To take a nap or an extra lap?  To sit and blog about my m.s. experiences or pretend they never happened?  To eat a raw foods diet and do everything I can to "cure" myself or go down the street to the assisted living center and help someone who is debilitated by this disease?  To take a look at this new hand I have been dealt and play it as well as I can or ask for a reshuffle?  To look at the person walking with a cane and say, "That could be me someday" or the person running up the butte with ripped muscles and say, "That WILL be me someday"?  Earlier today I was all excited and pumped up to make it the healthiest year of my life (that I have control over).  I daydreamed about eating a smarter diet, swimming every single day, lifting weights, cycling,  stretching....It looked good in my mind.  It felt good in my mind.  Now it's getting closer to midnight on New Year's Eve.  I'm tired.  My head hurts.  I don't feel like doing any of those things.  I want some chocolate, a good book, and some Calgon to take me away.  But tomorrow is a new day, a new year. And His mercies are new every morning. I'll start it off with fresh orange juice, eggs, and maybe blueberries.  Then I will have a swim and take an extra lap.  How bout you?

The 4 Types of MS and What's Your Boat?

I guess it's a good thing that I haven't thought about blogging lately.  Maybe that means I am forgetting about myself a little bit more? Or, maybe I am so fatigued that I can only handle doing the essential tasks of the day? Either way, life is busy and it seems that having time to sit down and blog for 15 minutes is rare.  I did promise to explain the four types of M.S. and so here it goes:

Relapsing-remitting MS
*This accounts for 85% of all MS diagnoses.
*Relapses are followed by remissions. People may recover at least partially from the relapses.
*Most people with this form of MS eventually develop secondary-progressive MS. (oh joy)

Secondary-progressive MS
*Irreversible disability accumulates gradually.
*Relapses or remissions are not clearly seperated.

Primary Progressive MS
*This accounts for 10% of all diagnoses.
*Symptoms gradually intensify over time without clear relapses or remissions.
*Conditions usually worsens continuously.

Progressive-relapsing MS
*This accounts for about 5% of all MS diagnoses.
*Relapses are often serious and usually have limited recovery
*MS continues to progress during periods between relapses.

Well, that's the simplest explanation I could find amongst all the information that comes in the mail, from the doctor's office, health insurance company, drug suppliers, web links, etc. There is an entire shelf in my bookcase loaded with pamphlets and books trying to make sense of it all. And most of it I never even asked for!  Some patients eat up every bit of it.  I think I did for the first few weeks.  But now I feel like it is so unpredictable and so different for every person that there is nothing really to "figure out" except what medicine to take...and even that is somewhat of a guess because the medicine is preventative in nature and there is no real way of knowing how I would have faired without it.  Research is proving it to be effective in slowing the progress and severity of relapsing-remitting MS in general, so, of course, I am giving it a "shot".  Most likely, that is the type of MS I have and most likely I am going to benefit from it.  'Nuff said.

One thing that is really apparent since my diagnosis is that everyone has something.  Not to be negative or discouraging but it makes me feel less sorry for myself, I guess.  I am constantly hearing of cancers, diseases, addictions, accidents, and physical trials of every kind that people all around me are dealing with.  It seems like we are all in the same boat (imperfect bodies) on the same ocean (imperfect world) but some have their sails up and are plowing through to a better land..a promised land..while others are anchored in their plight and even plundered by others who would take away their every hope. Some even seem to be throwing their treasures overboard so that they can cling to their misery.  I feel like this new addition to my journey is truly a new "addition" not a subtraction.  Of course, I have my down times when I would rather have it taken away.  But truly, is it not the bigger waves that create the greatest surf experience..the greatest roll on the waters...the hardest and most effective push toward the other side?  I'm riding this one out.  I want to take all of you with me because everyone has SOMETHING...something to deal with and something to show for it...treasures of experience, perspective, compassion, courage, sacrifice, endurance, character...Don't throw them overboard!  Let's help each other get to the other side.

Getting to Know Aunt Marge-Lesson One

No one really knows for sure where Aunt Marge comes from or why.  Is it hereditary? Well, there are over 30 genetic factors linked to it.  My daughter, Jacqueline, recently caught a glimpse of the headlines on a London newspaper announcing the recent discovery of several more genetic links. Looking back through my family history, we know of at least three women with M.S. Strike One.

A person with these genetic factors would seem to be more likely to develop M.S., especially if they lived in the northwest part of the U.S. This is believed to be due to the lack of sunshine and therefore low vitamin D exposure before the age of 12.  Records show that cases of M.S. are nearly non-existent as you get closer to the equator.  I was raised in Banks, OR which is about 25 miles west of Portland...the land of grey skies. Strike Two.

Having another auto-immune disease, such as Celiac Disease, increases your chances of having M.S.  Strike Three and please pass the rice cakes.

Multiple Sclerosis earns its name from the many scars that form as the body attacks its own myelin covered nerves. This causes pain, fatigue, numbness, spasms and a variety of other symptoms as the body fights harder to send messages from the Central Nervous System.  As in real estate, my doctor says that it's a matter of "location, location, location."  A lesion or scar in one area of the brain may cause more cognitive impairment versus a lesion on the lower spinal cord which may cause leg spasms or even immobility. Because of this, no two patients with M.S. will be alike. One of the most common areas of attack is the optic nerve which results in blurred, double and even lack of vision. This can come and go like most symptoms of M.S.  You may not know how you will feel from one hour to the next which makes life quite an adventure.  Many symptoms are triggered by heat.  The doctor recommended that I purchase a cooling vest to wear outside this summer.  Maybe next year.  And maybe I will have to bedazzle it.  It's very "subtractive", as we say in our home. 

Coming soon to a computer near you: Lesson Two...The Many Faces of Aunt Marge..including the ones you can't see.

Never Go to Bed Angry

They say there is power in positive thinking. I believe that.  I also believe that there is power in accepting reality and the possibilities therein.  There is no question that life WILL be unpredictable and challenging.  It's not a matter of IF it's a matter of WHEN and HOW.  Many times WHY doesn't even fit into the equation.  It just IS.  We live in an imperfect world.  But, thankfully, we have a perfect God who can use each day and situation for good.

A few days after my diagnosis, unaware of the news traveling outside my family,  I walked into an evening activity at the school.  Though my mind (and legs) seemed to be in a fog, I stepped carefully and confidently through the crowd. A friend suddenly stood facing me.  She grabbed both of my shoulders and scanned my eyes with her own, looking deeply, searching for something.  She said, "Colleen, I'm so sorry.  Are you ok?  Are you angry?"  That last word hung awkwardly in the air.  I felt my mind studying it.  What was it even doing there?  I couldn't make sense of it.  Who was I supposed to be angry at?  Anger usually stems from fear.  Well, I can't deny that I struggle with that here and there.  But, it is also related to frustration.  Frustration comes with unmet expectation.  What did I expect from this life?  The moment I was born, I cried because I didn't get what I wanted when I wanted it.  I laugh because life is so surprising, strange, punny and ironic.  I wonder and kneel because life can be so much more. Expectation.  You can't live in it...you can't live outside of it. I wouldn't say that I'm "angry".

Honestly, I try to fight thoughts of living in a wheelchair.  That might not be the hand I'm dealt.  But, it might be.  So, what?  My shoes won't wear out so fast.  And I am going to buy amazing shoes.  I might even bedazzle them.  I might wear six inch heels..just because that's the only way I can.  I might drape a new and beautiful tapestry across the back of my seat every day.  Or, I might walk with a cane.  No, an old fashioned umbrella with ruffles along the edges.  No, a walking stick carved by one of my husband's Cherokee ancestors.  This is the fun I try to have with my thoughts.  I'm not saying it always happens this way.  Other times, when I am just too tired, I let myself think about all the stairs in my house, all the times I have to get in and out of the car every day,  how expensive it would be to get an electric lift installed in our pool, the laundry....o.k. that COULD get really frustrating.  Maybe I will get angry.

I try to accept that even IF...my life will still be what it has always been...a beautiful disaster.  I love that phrase.  It reminds my of my daughter's 4th grade science experiment.  We learned how light reflects, seperates and bends through the rain.  My life has this light that shines down through my storms, my brokenness and then it divides into all these surprising colors and leaves an awesome arch over the whole thing.  And at the end, there is not a pot of gold, but a street of gold that stretches on forever...and I can WALK on it.

The Diagnosis in Cursive

When the doctor's assistant called to schedule the follow-up to my spinal tap, I knew that she knew.  Her positive tone actually made me suspicious.  My mother and husband both wanted to go to the appointment with me.  I knew that my mom really wanted to be there to support me and I hated to have Jack miss another day of work.  I also felt that by not having Jack go, I was proving that I was hoping for the best.

The doctor came in and sat across from me at a close, yet comfortable distance for a nice long chat.  My mom sat to my right with pen and paper propped up on her purse to take notes.  My chart was opened and she proceeded to tell me that my tests for cancers and then bla, bla, bla (it's all a blur)...came back "negative".  It all looked good...."BUT"...(a Pee-Wee Herman quote came to my mind for comic relief)...I did test positive for M.S. I don't remember the doctor's exact words.  All I can remember is that on a small folded piece of scratch paper, my mom wrote, "does have M.S."  That's the one thing I remember most from that day.  When I close my eyes, I can still see her cursive hand-writing across the page.  My heart sank for just a brief moment but strangely lifted at the realization that I was not really just going crazy.  I resolved to soak up all the information that the doctor was trying to impart. In an effort to avoid overwhelming me with too much, she pulled a book down from her shelf, M.S. for Dummies.  I chuckled at the thought that maybe there was a copy of M.S. for Smarties in her collection but she chose the former.  We sat and talked for a few more minutes, my mother taking careful notes. The doctor allowed a few weeks until my next appointment so that I could consider my treatment options.  Which meant: shot A, shot B, shot C, shot D, shot E or shot F.  Some had risks, some were inter-muscular, some were steroids, some once a day, others once a week or month, etc.  But none were a cure.

All I wanted to do was get to Jack.  We drove just a block across the street to his office where I immediately met him in the hallway.  I told him the news without any show of emotion because I knew that he would feel bad about not being there with me during the appointment and even worse that he still had a whole day of work ahead.  I told him that we could talk later, enjoyed a long hug, and went home.  Fifteen minutes later, he walked through the door.

The Waiting Room

A doctor's waiting room is like a microcosm of life.  There are people who will make the most of their "pause" by editing their day planners, making a grocery list, or even cleaning out their purse (my personal favorite).  A more relaxed person may casually flip through the magazines while taking note of good recipes or beauty tips, people watch, or phone a friend.  There are even those who foresee and even hope for this waiting and bring along a book or laptop.  On the other hand, there are those who, maybe due to the reason for their visit, are so nervous that all they can do is sit and focus on the waiting.

Sometimes I think that life is about how we live in the waiting.  I suppose in the widest scope, one could just be waiting til their end. But in many ways, we wait.  We wait for birthdays, holidays, to drive, find jobs, buy a home, get a report card,....get a diagnosis.  I wonder what an outsider would have observed about me during my waiting?  Could I be considered a person with faith even though I followed through with occasional impulses to research every positive outcome?  Or was I just being a responsible, educated patient?  Was it ok that I sometimes looked for blogs and comments of people with M.S...looking for clues, allowing my emotions to ride up and down?  I can't decide if I spent my waiting time productively or psychotically- but, regardless- a month seemed like an eternity.  Thankfully, in eternity, there will be no more waiting.