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.
Wednesday, February 27, 2013
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.
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!
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.
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.
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.
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.
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