Friday, August 28, 2015

Swimming Through Tears

When I have been asked to share all that has transpired regarding the health of my family in the past few years, from Celiac to MS to Chronic Regional Pain Syndrome to Ehlers Danlos Syndrome to Postural Orthostatic Tachycardia...it's almost hard for people to believe it, myself included. These conditions have robbed my husband of his dental career, my son of sports, my daughter of large buttered pretzels, and other more substantial and personal treasures and dreams.  These syndromes, conditions, diseases instead offer uncertainty, anxiety, pain in all of their various colors and shades that are too numerous to paint. Many doctors, counselors, close friends who know of the gravity of the situation, the appointments and tests, infusions, therapies, the hard days have asked me, "And how are you holding up?" or "How do you deal with all of  this?" Sometimes I feel embarrassed or not worthy of such a question. Yes, I have MS, but my family lives with DAILY nagging pain, DAILY dislocations, DAILY fatigue, nausea, blacking out, autonomic roulette and very little sleep. And I wish I could take it all upon myself and let them be free. I can't stop it, I can't control it. I feel similar to those who may have 'survivor's guilt' in that I'm 45 with MS but can run a marathon and my children are young and sometimes struggle to just take a shower. Many may be shocked to hear this. My kids are fairly active, beautiful, talented. For the most part, they live what looks like normal lives. You can't SEE many of their challenges. They push hard to do what may be effortless to others. They push harder to do what is hard for others. They often crash at home where they can be real and rest. And while I am seeing the beauty that rises from the ashes, I will still make the same wish when I blow out my birthday candles from now on. I try not to think of it all at once. I know there are people who watch their children die and starve and suffer terrible things. I know I have so much to be grateful for. I know that things can get better with modern medicine, with a powerful God. I have hope and I am very proud of my children and husband who try and thrive and keep on going amidst all of this. They are so much more than their rare diseases, their genetics. I am grateful for their compassion, their insight, their grit, their softness, their passions, their friends.  I am grateful that my MS symptoms are mild and that today I can still walk, drive, communicate and care for myself and my family.  I try to train my mind to capture every black thought and reshape it into something gold and glowing. But, I don't always win. And when the battle is raging, I swim to cry. A few times I have let the emotions and stress rage until I was literally and metaphorically numb. It sent me into an MS flare and I had to have assistance getting out of the pool. Now, I have learned to temper it just enough. It is important for me to keep feeling. It reminds me that I am fully alive. I want to be fully alive.

Swimming tHrough my tears. I'm not drowned by them although I am fully submerged and my lungs work hard to lift and fall. Moving, tiring, and strengthening all at once. Over and over. Determined. It's night and only one underwater bulb is casting a glow. It's just enough light so I can see the next strOke and not dash my head against the grey. The clear water stretches out linear and I know there is an end and a ladder. I glide through the deep, eyes closed, mind open to every fear, grief, pain, and no one can see it storming, gushing. It is safely, silently escaPing except for the occasional unrestrained sob that breaks the warm surface. I realize that the tears could choke me but they mix with the water and I am able, I am buoyant and I am propelled with resistance.  Reaching to the shallow and pulling myself up with the silvEr bars, the tears slide off my back and drip in puddles around me. I'm up, I'm out, I'm done. I'm ready to dry off and take on land, born of water. I will sleep better tonight and tomorrow the breathing will be easier.

Saturday, June 7, 2014

"At least I have........this day."

Every Thanksgiving since I can remember, someone at the table has said, "I'm thankful that we have our health", myself included. Little did we know that incurable chronic illnesses/diseases/syndromes  were lurking in the shadows of nearly every chair. I almost have to laugh at it. It's better than the other option.

 People like to say, "Well, at least I have my health." I've been thinking a lot lately about that statement and perspective. Billions of dollars and probably billions of cumulative hours are spent each year on products and programs to help us maintain, repair, renew and improve our bodies to reach our best as relative to our culture. Whether it is for "health" or asthetic "wellness", it seems to be a blurry distinction if at all worth discerning. As one who loves to exercise, I must admit it is not always for reasons void of "appearance" or turning back the biological clock that in many ways will tick on regardless of my efforts. But, lately, I can't help but think about what life would look like if just as much or more effort was put into the things that tend to go on living longer than our looks and the strength of our bodies.

 Volunteering at my grandmother's memory care facility has been heart-breaking and heart-warming. There are retired doctors, teachers, pastors, mothers of five children, world travelers, athletes. Photos of their past are preserved in sparkling glass at the entrance of each of their doors. Standing strong, living life to the full, engaged in activity. Then, you turn the knob and enter a different world. Most of them are wheelchair bound or stooped over a walker shuffling their laps around the building in their swollen stocking feet. Many times, they are crying but not able to say why. They lived a full life but their minds and bodies went awry. Is it because they didn't eat right? They didnt exercise enough? They didn't take the right vitamin or rub the right essential oil on their feet?  Is this what we assume? For the most part, I am doubtful. They are human. We live in a broken world of disease. We grow old. Our bodies and minds grow old. We can't stop it. Not to say that we shouldn't gently respect ourselves and be responsible for what we have. I'm just saying....it won't last forever. Not until GOD renews our bodies on the other side will we live forever young.

So, what are those "things" that we should put more time/money/effort into? Im asking that of myself. From what I have learned of the elderly, the sick, those who have passed on and those left behind....I want to live for what I value the most..EVERY DAY. Im going to write down my thoughts and things I have learned because there may come a day when I can't articulate them anymore.  I am going to start giving more of my time to loving, listening. Im going to try to smile more. Im going to invest more time and money into building memories, relationships. Im going to stop thinking so much about my waist size and whether or not there is a chemical in my granola bar. Im going to try to put more time into something that will last...not my body, not my mind....but my legacy. Yes, I will continue to eat gluten free because I have Celiac disease. Yes, I will give myself an injection every night to stave off relapses with my M.S.. Yes, I will read more than the comics in the paper to keep my mind sharp. Yes, I will swim and go easy on the chocolate. But, I know that someday, no matter what I do, it will start to crumble. I may make it to 90 or 103 like my grandmothers who are still striving today. But, when/if I get to the point where I may not even know who I am, I hope that my legacy defies my shell. Im 44. I guess it's time to figure out what exactly that will be. I cannot say, "At least I have my health", but I can say, "At least I have this day."

Friday, November 8, 2013

Roar - Katy Perry (Cover by Ali Brustofski) Official Music Video

http://www.youtube.com/v/afUWccsC68A?version=3&autohide=1&showinfo=1&autohide=1&autoplay=1&feature=share&attribution_tag=x_Q6ic4d5K-nvXpxIjIatw

Whenever I hear this song in the car, I open the sunroof, crank up the bass, and live in it!!! So fun!

The Can List

I always liked the idea of a "Bucket List". From time to time I have thought about all of the things I would like to do before my final day...assuming it is far off in the distance at 89 (the age of my maternal grandmother) to 102 (the age of my paternal grandmother). But these past few years have changed my perspective a great deal on how many opportune years I might actually have available to accomplish small feats to big adventures. After all, Aunt Marge is along for the ride. The possibilities seem to be countered by the potential impossibilities that could loom closer than I think. With M.S., it feels like dreaming is a gamble. Right now, the battle feels more in the mind than in the body. It feels like this is the critical point in the journey.

Every morning, with no cure in sight and over 900  used needles in the red sharp's container on my bathroom counter,  I am aware that I am going to die with this disease. The question is, "Am I going to LIVE with it?"  Sometimes, when my head hurts and I feel like there's an earthquake raging inside my body, I'm tempted to stay in the bed, forget the swim, forget the to-do list, forget the needs of others, forget the small feats and  big adventures. But, thankfully, I still have the cognitive ability and a higher power to fight the apathy. I know that every day is a practice for the next. The more I practice getting up and going when I CAN see, the easier it will be for me if I get up one day and CANT.  If I practice determination while I CAN walk, the easier it will be if I wake up someday after a lesion decides to locate on my spinal cord rather than on another obscure crease in my grey matter...and I CANT. I have also found myself in peculiar situations that have encouraged me, humbled me, inspired me, broken my heart and taught me a great deal more than I had counted on. I will write more about that in my next blog.

For now, let's just say that I have dismissed The Bucket List and am forging ahead with The Can List. Death could be 50 years away. My inability to use my fingers to strum the guitar could be only 10 years away. So, I signed up for guitar lessons last month...while I CAN. My inability to drive my dream car with legal vision might only be 20 years away. So, I will drive the black Jag with tan interior while I CAN. My inability to remember and organize my thoughts might only be 15 years away. So, I will write down the things that I have learned and want to share with my children while I CAN. These are a few of the items on my Can List. But daily, I think about how I want to spend my hours. I think about what matters to me. I think about what I CAN offer.  My inability to safely hold a baby and walk confidently across a room may be only 5 years away...so I will hold and bounce and walk the babies in my life while I CAN. My inability to get in and out of the pool could only be 7 years away, so I will get in and pass on my love for swimming to the next generation while I CAN.

 This is how I want to live with Aunt Marge. She doesn't drag me back..she is pushing me forward. She is teaching me what matters. She is the friend who is more concerned about telling me what I need to hear instead of what I want to hear.  Not that I am doing it perfectly or even admirably. I'm simply doing it. I'm practicing it. I'm getting up...because I CAN. I'm certainly not ready to kick the Bucket.

Wednesday, February 27, 2013

Two Years.

Well, it has been almost been two years since my diagnosis.  I remember because my two oldest girls were away on their annual youth group mission trip to Mexico during Spring break. I didn't want to tell them the results of my spinal tap until they were home.  So many things have changed since that day.  And thankfully, many things are still the same.
During the time of my diagnosis, my husband was facing a very hard reality of his own.  He had been suffering from nerve pain in his hand/arm for over eight years. He knew that he could soon be facing the end of his dental career.  After visiting over a dozen specialists in the Pacific Northwest and undergoing several surgeries, there was still no relief.  No cure.  We had sold our dream home and  moved into a wonderful bank-owned home at a fraction of the cost. We met with a private disability agent. After eight years of suffering, he was finally taking a serious look at quitting. The next day, in an effort to work out some of my fear, anxieties and sadness for my husband, I put in my favorite Tae Bo workout dvd.  I punched and kicked and sweat my heart out.  Then I stood in the hot shower and cried and cried and cried. My legs went numb and felt heavy and paralyzed.  Then my arms.  My heart was racing and I couldn't control my emotions.  I stumbled out of the shower, wrapped up in a towel, grabbed the phone and laid down in the hallway to call Jack. Jack, who had enough to deal with.  Jack who was fighting his own battle.  Jack,  my provider, protector, care giver. A few weeks later, Jack, who after finding out that I had M.S. decided he couldn't quit. He wouldn't. There was too much unknown ahead of us. Besides the fact that we had four children to raise, college, weddings, bills, medical expenses.....
And so, for over a year, he worked through the increasing pain in his arm as he helped me deal with my "new normal".  He slept about three or four hours each night.  Seeing his overwhelming discomfort, fatigue and frustration day after day,  I told him that we just needed to know from God if he was supposed to quit. We would be bold and ask God to make the pain soooo unbearable that he knew WITHOUT A DOUBT that it was the right thing to do. Be careful, you just might get what you pray for!  Within a few days, Jack described his pain like dipping his arm in a trough full of gasoline and someone lighting a match.  Zero hours of sleep. Zero relief. Zero doubt....it was time.
And now, here we sit.  Jack is tired.  His shoulder is on fire tonight.  He can't sleep so he is reading a book called, "Managing Pain Before It Manages You".  My hair is still wet and I am tired from teaching a swim lesson. But, I'm happy to be able to swim and able to contribute and able to show my kids that you don't let your limitations defeat you, but it's ok to let them soften you a bit.  I am happy that although some things have changed, many things are still the same. Although my husband is no longer a dentist,  he is still a wonderful provider, protector, care giver. Although we are living a little differently, we are raising our kids, sending them to college, paying bills...looking ahead to those amazing weddings. And we are still looking to God for answers.  In a few weeks, it will be Spring break and Jacqueline will leave for Mexico. She will be building a home for someone who doesnt have one.  I feel blessed.  She will be engaging with people who exude joy despite the pain of poverty. I am inspired.

Saturday, March 10, 2012

Now News is Good News

   I can never seem to find the time to blog.  But today seems like the perfect day to set aside a few minutes for reflection and sharing.  I sit in a lovely Bed and Breakfast in the quaint town of Ashland, OR.  My husband and I celebrate my latest medical report.  My first annual MRI since diagnosis shows "no new lesions".  Aside from the two herniated discs apparent  in my neck, this is very good news.  It means that the daily shots have been worth it. The medication is slowing the progress of this disease and all those research fundraising efforts by thousands, maybe millions of people over the years is blessing one more person. I always wondered about the Walk for MS, Bike for MS, Skydive for MS??  Is it all just a scam?  Does that money ever really help in finding a cure?  I never imagined that the questions would roll around in my head as they do now.  It's hard to believe that I am living proof of the miraculous answers taking place.
  Our celebration has included tennis in Lithia Park, leisurely walks, fishing, dining, reading...and epiphanies about our blessed lives and the years ahead.  I saw an elderly lady at the ice cream shop yesterday.  She held her cane close so as not to block the way of the younger crowd quickly passing by to choose their passion.  She had no idea that I was intently sitting and waiting to learn of her every slow movement.  She walked at a pace that seemed too painful and frustrating for me to grasp.  Yet, she smiled as she patiently gazed upon every child-inspired flavor.  Bubble Gum, Razzle Dazzle, Rocky Road.  She looked dignified with her salon perfected white hair and rosy makeup.  Yet, she was comfortably donning her clean and practical black athletic capris.  Her sixty-something daughter kept calling to her from a few freezers away.  "Mom? Do you know what you want?"  "Mom?  Have you decided?"  "Mom?  How about Vanilla Bean?"  Her Mom continued to consider each potential dream.  I felt like saying, "She just wants to take her time.  She just wants this experience to be everything it CAN be.  She just wants every step to be sweet and meaningful because who knows how many moments like this are left for her?  Let her be." She was so happy to just be there in the ice cream store window shopping.  Children were running free, college kids were flirting in the back of the line, dads were the heroes of the day as they paid for the delights, mothers sat in the booths with a moment to breathe while everyone was cheerful and satisfied.  And Mom, in her eighties had already been there, done that.  Now, she simply enjoyed the choosing. 
  I see my life ahead of me.  This new wrench in the expectations I once had is working something fresh inside of me.  I see possibilites for tomorrow that look good and hopeful.  Still, I really don't know what another day will bring.  But, I do know today.  I know the warm sun.  I know the clean breeze.  I know this man that I love.  I know a tummy full of creamy ice cream.  I know there is a sweet little girl running and rolling down the grassy hill in the park.  I know a brilliant white mountain in the horizon.  I know a deep breath.  I'm slowly tasting every one.  I'm filled and content right now in this moment to just be here amongst all these dreamy flavors.  I'm learning to be patient and experience the experience like Mom.

Saturday, December 31, 2011

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?

Wednesday, November 2, 2011

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.

Thursday, September 22, 2011

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.

Thursday, September 1, 2011

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.

Sunday, August 28, 2011

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.









Wednesday, August 24, 2011

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.

Wednesday, July 20, 2011

Life With Aunt Marge: Our God is Greater - Chris Tomlin

Life With Aunt Marge: Our God is Greater - Chris Tomlin

Life With Aunt Marge: Misfire at the Airport

Life With Aunt Marge: Misfire at the Airport: "I was thankful to get through airport security with my 12 pre-filled glass syringes. Copaxone. I was well prepared for any trouble. I had t..."

Life With Aunt Marge: Hindsight is 20/20

Life With Aunt Marge: Hindsight is 20/20: "For reasons we thought we understood (simplifying our life, getting out of debt, being closer to town, escaping allergens..etc.) we decided ..."

Life With Aunt Marge: Mercies in Disguise

Life With Aunt Marge: Mercies in Disguise: "http://www.youtube.com/watch?v=1CSVqHcdhXQ&feature=player_detailpage It made sense that my vitamin B levels could be low due to poor absor..."

Life With Aunt Marge: The Tests

Life With Aunt Marge: The Tests: "The doctor was very easy to talk to and didn't make me feel like I was crazy when I told her my various strange symptoms. She performed a b..."

Monday, July 18, 2011

The Tests

The doctor was very easy to talk to and didn't make me feel like I was crazy when I told her my various strange symptoms.  She performed a brief physical exam, testing reflexes and such.  She noted that one side of my body was reflexing a little differently than the other.  Other than that, all seemed well.  With that small clue along with the symptoms I shared, she decided to order an M.R.I.   A few days later, I was heading through the white tunnel hoping I could make it through an hour and a half of imaging without using the bathroom and without twitching from the muscle spasms.  I actually felt amazing during the test.  My body felt so relaxed that I even had the crazy thought that maybe God was healing me at that very moment.  I expected the test results to come back normal.  As I was leaving the M.R.I. room, the technician who had gone into the small computer room to see if the images were clear, came in and asked me how long I had been having my symptoms.  "Why are you asking me this?" I thought to myself.  "Did you see something?"  It didn't really  matter if she had because she wouldn't have been able to tell me.  Then, as I left the room to get dressed, the man who had been watching the computers during the whole test came out of the room and said, "Good luck to you, miss."  The same questions haunted my mind.  Were they just making small talk, being polite? I went from wondering if I was healed to wondering if I had a massive tumor on my spinal cord. 

I was grateful that the doctor had squeezed me in on her lunch hour to give me the results the next day.  "Inconclusive", was her conclusion.   There were several white spots on my brain indicating lesions.  These lesions could have been there for many years as a result of migraines or they could be lesions caused by multiple sclerosis that were located in areas that were not considered "classic" to the disease.  No spots on the spinal cord or brain stem.  That was a good thing.  No tumors.  A great thing!  She gave me two choices.  One, I could have a spinal tap that would give an immediate answer as to whether or not I had m.s. with a 95% accuracy.  Two, I could wait six months to see if I had new symptoms and possibly order another M.R.I.  The problem with number one is that spinal taps can be very uncomfortable.  The problem with number two is that if I did have m.s. and didn't get medicated right away, I could have another attack.  Each attack is usually different...maybe more severe.  The damage from those attacks cannot be reversed.  What if in the next six months I had an attack that damaged the nerves to my legs?  The doctor assured me that the likelihood was slim, but there are no guarantees.  I decided to think about it. 

Within a week or so, my symptoms started to escalate.  Each time this happened, I would worry about the long term damage that could be happening inside my body.  Deep down inside, I knew I needed to just have the spinal tap done, but I was scared.  My doctor reassured me that she had only had two patients with spinal tap complications within the last five years.  For some reason, I felt like I would be the third.  I battled back and forth with the idea.  I called my friend, the doctor, and discussed it with him.  I called my aunt.  Everyone seemed to think it would be best for me to just have the answer I needed...just so I could have peace of mind,  rule it out, etc.  The spinal tap would go fine. Statistically, that was true.  But, statistically, I shouldn't have celiac disease.  I shouldn't have m.s.. 

After a bad night of numbness and spasms, I finally decided to bite the bullet.  I opted to have the procedure done in my doctor's office rather than by a radiologist in the hospital.  She is a very capable doctor and she assured me that I was thin enough that it wouldn't be difficult to find just the right space to insert the needle to draw the spinal fluid.  And, it was thousands of dollars cheaper.  Jack went with me.  I bent forward, hugging my knees while he sat facing me, hugging all of me.  It hurt, I won't lie.  The doctor said she hit some scar tissue and needed to move to another spot and try again.  I didn't doubt it.  I have been having chronic back pain for years.  At one point, the fluid stopped flowing and she was afraid she wouldn't be able to collect enough for all the tests she wanted to order.  Thankfully, the flow picked up again and it was over in a few minutes.  My legs both went numb.  She said that was normal because of the adrenaline.  In my mind I thought, "No, it's because I DO have m.s., dangit!"  But, I always had that battle of faith and fear going on in my head.  And it would continue for a few more weeks while I waited for results.

The doctor warned me that a slight percentage of people would get a bad headache from the spinal tap.  I was to lay flat for a day or two in order to avoid this.  I thought I followed the orders quite well.  But still, I became the exception to the rule.  I took pain killers and hoped that things would get better.  They only got worse.  Every time I lifted my head, I felt it would explode.  The pain was unimaginable.  I called the doctor's office and was instructed to meet a radiologist at the hospital who would perform a procedure similar to the spinal tap where he would collect some of my own blood and insert it into my spinal cord (with another long needle) and patch up the hole that was causing my spinal fluid to leak out.  This was called a "blood patch" and it didn't sound fun at all!  I declined.  Maybe I just needed to lay flat longer.  Nope.  It didn't help.  The next day my mother came to stay with me while the kids were at school.  Now, every time I lifted my head, I started to vomit.  I called my doctor friend.  I wanted him to tell me that it would go away.  But instead he told me the blood patch HAD to be done.  It would give me immediate relief.  It was the only solution.  So, a special radiologist was called into the hospital.  In a few hours, I was on my way.  I staggered down the walkway outside of our front door bent over with my head down.  I only made it a few steps before collapsing on the front lawn to throw up.  My mom grabbed a plastic bowl and helped me to the car.  Luckily, we now live just a few blocks from the hospital.  I couldn't believe how long I had to sit in the waiting room.  I found a couch and laid down, praying that I wouldn't throw up in front of everybody. 

Finally, I was whisked down the hall to an x-ray room.  I lay on the table, curled up on my side.  The radiologist was amazing.  He gently described the procedure to me and walked me through the whole thing with his soothing voice and mannerisms.  The nurse had to call in her supervisor because she was having a hard time drawing my blood.  When my blood was finally pulsing through the tubes, the radiologist was able to get started.  The imaging machine helped him to locate the spinal fluid leak and the blood was slowly inserted.  He told me to let him know when I started to feel pressure.  That would mean that the hole was "plugged".  Even though it was uncomfortable, I actually waited a few seconds after that sensation...thinking that would guarantee that it was very, very "plugged".  He was curious why it had taken so much blood.  I didn't confess.  The radiologist was  like a miracle worker!  Immediately, I was able to sit up and walk upright down the hall to the recovery room.  I waited an hour and went home. 

Yep, I beat the odds...I was my doctor's third person.

Thursday, July 14, 2011

Mercies in Disguise

http://www.youtube.com/watch?v=1CSVqHcdhXQ&feature=player_detailpage

It made sense that my vitamin B levels could be low due to poor absorption caused by celiac. But, the blood work came back normal and I was referred to a neurologist.  He was a very reputable doctor and I was thankful to know him personally.  Unfortunately, with his success comes a very full schedule. Waiting for my appointment was driving me crazy.  I contacted my aunt who also has m.s. She was a great encouragement to me and we both felt like it must be something else.  I started researching the possibilities.  The day that I was learning about Lou Gehrig's disease, the muscles in my left arm started twitching.  I could see it happening.  "Oh God, not that!", I thought.  My hands were falling asleep every night. And then, my legs.  Each new symptom became my new research project and added to my anxiety.  I was trying to be patient about my appointment.  Jack suggested that we call our friend, the doctor, and just see if we could get in any earlier. I refused to play the "friend" card and ask for special privileges.  I simply called the front desk and asked to be put on a waiting list to fill any cancellations that may arise.  And then I prayed. And Jack knelt beside me and prayed.

  The next morning, after suffering a sleepless night, I went to drop off my daughter at school.  And who should pull  up to the school curb in front of me?  The doctor. In the few years that our children have attended the same school, I have never run into him while dropping off my daughter.  I wanted to jump out of my car and tell him everything.  But, I was in my pajamas. Yet, this was a God moment, so, of course, after his kids ran towards the school,  he got out of his car and came to me. He was getting ready to go out of town and was going out to breakfast with his wife after dropping off the kids.
He didn't know that I had made an appointment but the look on my face told him that something was wrong.  When I told him about the hot shower incident, he became more concerned.  He was heading out of town for the weekend but said he would talk to his secretary about getting me in on Monday if possible.  He drove away but within a few minutes he called to tell me that he would like me to see one of his partners who specializes in....m.s.  And she could see me the next day.  Don't tell me this was all a coincidence.