Note from Marie:

It was just three weeks ago that I first felt God’s tug on my heart to begin HopeKeepers® Indy, a ministry for chronic illness support.  I’ll tell you how it began. 

I was diagnosed with Multiple Sclerosis over 35 years ago, and live with the daily realities of this unpredictable, quirky disease.  2014 was a particularly difficult year.  I went through several extended MS relapses, then underwent total knee replacement in August.  It was a time of brutal pain and suffering.  2015 did not start well, either.  In January my mom was hospitalized for three weeks with pneumonia.  Our whole family was exhausted with caregiving by the time she came home. My exhaustion caused another MS relapse and lowered immunity, and I soon faced a greater health problem.  Due to MS, I live with incontinence, and I went to my doctor with a simple “diaper rash”, for which she prescribed Diflucan.  One Diflucan pill caused a violent allergic reaction that led to a two-month struggle with rampant Candida rashes covering much of my body and causing my face to repeatedly swell, burn. and peel.

During those two months of isolation and pain, I continually asked God to show me His purpose. Through the years, God has taught me my most important lessons through physical suffering. I knew there had to be a purpose behind this new trial in my life.  I was a Christian school teacher for many years, until MS sapped my strength and stamina and I had to retire from teaching.  In recent years I have led twenty Bible studies in my home, and was searching for a topic for our Spring study. Normally I know our next Bible study topic before we finish the current one.  This time I could find nothing that resonated with me.  God had other plans.

It was on a Wednesday three weeks ago when God impressed on my heart that I am to begin a new ministry offering support for those who live with chronic illness.  The call is clear, the vision is big, and the passion is strong.  Within days I contacted our pastor at Hope Community Church in Brownsburg, IN, and he was very supportive.  I searched online and found restministries.com, a treasure trove of resources for chronic illness support.  The founder, Lisa Copen, has Rheumatoid Arthritis, and established Rest Ministries in 1996, when she could find no Christian support group for chronic illness. Rest Ministries now has over 300 small-groups called HopeKeepers®.

Now, just a few days later, I sit at my desk amazed at all that has happened so far:

• I have eight resource books from Rest Ministries, and all of them are packed with practical and spiritual guidance for our own HopeKeepers® Indy group.
• We have our own email address, hopekeepersindy@yahoo.com.
• We have this fledgling blog site, hopekeepersindy.wordpress.com.
• God has brought a group of supportive friends who are praying for our new ministry.
• He has also brought a co-leader for our ministry.
• We have visited another chronic conditions support group this weekend, so we can learn from them.
• I have met with our pastor at Hope Community Church, and we have approval for the church to sponsor HopeKeepers® Indy.

WOULD YOU HELP US PRAY? 

Here are specific prayer requests as we await God’s guidance:

1. For God to lead every baby step of this ministry outreach
2. For me to be open and willing to follow His calling regardless of my limitations and fears
3. For my MS fatigue, brain fog, and blurred vision to allow me to act/think/see clearly for preparation
4. For God’s detailed direction in setting up the new ministry blog site
5. For God to bring a co-leader for the ministry, since my MS is unpredictable
6. For God to prepare the hearts of those who will need this ministry; for Him to call the ones He wants to be involved.
7. For God to lead in the frequency and schedule of our small group meetings that will be easiest for those with chronic illness
8. For God to direct the focus and format of our small group meetings
9. For God to direct our vision of how to serve those with chronic illness, and how to encourage them to serve others.
10. For God to bring together a powerful prayer team to faithfully pray for the ministry
11. For HOPEKEEPERS® INDY to have outreach beyond our church doors into our community
12. Most of all – for God to be glorified in all we do, and for others to come to know Christ as  Savior through the ministry

I’m excited and anticipating our launch date for HopeKeepers® Indy in the next few weeks.  

Be watching and praying.  

If you would like to follow our blog, click the FOLLOW link in the margin to the right!

Note from Marie:  This post was written after I entered a Multiple Sclerosis relapse that lasted for twenty-two days. It was the first of several extended relapses in the same year.  I posted “Here I Am Again” at the start of the relapse. 

When I first recognized that I was going into MS relapse, I anticipated a few days of inconvenience and increased pain based on relapses in the past. I felt prepared to enter a time aside with the Vinedresser as He pruned away on this weak branch of His. I prayed with humility and acceptance of His lessons at His designated time.

What I was not prepared for was the vicious pain I endured for twenty-two grueling days. From hips to the soles of my feet, my legs felt on fire, and I could find no relief. In addition, the muscles in my legs would alternately lock into spasm. I could not rest because the pain would wake me up. I tried sleeping in my La-Z-Boy recliner, but even that comfy old chair was no help.

With the aid of my walker, I could shuffle from bedroom to office, but left the house only for necessary appointments. My mind felt shrouded with “brain fog” and I found it nearly impossible to concentrate on anything. I had difficulty focusing on Bible study, and even found conversations hard to follow.

I basically slogged through my days, barely keeping up responsibilities. I kept my routine of dressing, doing hair and make-up. I prepared to lead Ladies’ Bible study, I paid the bills. I went through the motions of eating without really tasting the food.

The week before this relapse began, my husband Jim had a cardiac defibrillator placed, so he was also weak and in need of lots of rest. We missed four weeks at church, and three weeks at Small Group. Though friends in Bible study continued to come on Tuesdays, I felt isolated from the outside world the rest of the time.

My initial plans of sweet fellowship with the Lord were interrupted by pain. In reality, by the end of the second week, I was wrestling with God and pleading for remission. I found it hard to pray. Instead, I immersed myself into reading novels, where I could briefly escape from facing my own life. I shuffled into the library and checked out inspirational novels whose characters were overcoming challenges of their own through God’s grace. Somehow, if not inspired, I was at least diverted by those books.

After those 22 days, I awoke one morning after a night of decent sleep. For a brief few minutes, I had no pain in my legs. I felt rested, and I felt hopeful. I was almost afraid of that hope, afraid to believe that the long relapse was ending. I began to feel my optimism returning. It was like surfacing from deep waters. Praise God, the ordeal had ended – for a time.  I know there will be more relapses.  This week a dear friend asked me to be her “Wellness Prayer Partner”. Isn’t that awesome! We have bonded through mutual understanding of physical challenges and the need for prayer. God brought us together by divine appointment for such a time in each of our lives.

Isn’t that just how He works? God knows just what we need at every moment. I know that in His grand plan there is purpose in the suffering. There is purpose in meeting with a new prayer partner.

And I am grateful.

Dear Lord God,
You know me in the deepest recesses of my soul.
You know just what I need, and just how much I can endure.
You have promised to give me no more than I can bear,
and You have kept Your promise.
because I have not had to bear it alone.
You have also given me the treasure of a praying friend who understands.
I praise You and I thank You.
You know best, my Vinedresser.
You have pruned deeply this time, and it has been painful.
May new growth and fruit come from the pain.
I love you, Lord.

Note from Marie:  I wrote this post just before I went into relapse a while ago.  The symptoms described are fairly typical ones I experience before each relapse.

Father, here I am again.

I finally realize why I’ve been downcast for the last few days.
I should recognize this familiar place.

For days now there has been a pattern of sleep without rest;
of dragging fatigue;
of forcing myself to smile when I need to;
of searching for a comfortable way to sit;
of struggling to remember names;
of  staring at the computer without being able to write;
of feeling weepy and withdrawn without apparent reason.

Here I am again.
The painful buzzing in my legs this morning signaled yet another MS relapse.
I just checked my calendar.
I went into relapse at almost the exact same week last year.

Somehow, figuring out the reason for my despondency has lifted my spirits.
Now I have a familiar battle to fight, and I know what weapons to use.
I cling to Your Word, my Lord.

“Why are you downcast, oh my soul?” cried David in the Psalms.
Then He took refuge in praise.
So will I, my glorious Father!

You have said in Your Word that You inhabit the praise of Your people.
I choose to praise You,
O glorious Lord!

You have a reason to set me in a quiet place now.
It is here, in this time aside with You,
that You will teach me and minister to my very soul.

So I welcome this relapse.
May it be a time of respite and renewal.
May I praise You with song
and with mediating on Your promises.

May every sting of pain be a reminder of what Christ endured for me.
May every sleepless night be filled with listening to You.
May my foggy mind be filled instead with the clarity of Your glory.
May my exhausted body find refreshment as I drink from Your Word.

May I come forth with fresh vision and strength to do Your will.

So I will meet You in the arbor, where You will prune this branch.
I love You, Lord,

It has been said that if you interview 1000 people with Multiple Sclerosis, you will get 1000 different stories.  It’s true.  I spent a couple of hours watching Youtube videos of individuals describing the course of their experience with MS.  The stories were widely varied.  The reactions to diagnosis ran the gamut from despair to determination.

In the early eighties, my diagnosis took almost three and a half years.  I went through that range of emotions myself.  Today there is much greater awareness of Multiple Sclerosis due to education projects of MS organizations, the accessibility of the internet, and the efforts of well-known celebrities who have personally experienced Multiple Sclerosis.  Montel Williams, Teri Garr, Neil Cavuto,  Ann Romney,  Alan Osmond, and Annette Funicello are a few who have been diagnosed.

There are now dozens of websites, videos, organizations, books, research papers, and treatment options. The go-to sites for information for MS are:
National Multiple Sclerosis Society       http://www.nationalmssociety.org/index.aspx
Multiple Sclerosis Association of America      http://www.mymsaa.org/

Here is the standard description of MS :
MS is a disease that involves an immune system attack against the central nervous system (brain, spinal cord, and optic nerves). The disease is thought to be triggered in a genetically susceptible individual by a combination of one or more environmental factors. Although MS is thought by some scientists to be an auto-immune disease, others disagree strongly because the specific target of the immune attack in MS has not yet been identified. For this reason, MS is referred to as an immune-mediated disease.

As part of the immune attack on the central nervous system, myelin (the fatty substance that surrounds and protects the nerve fibers in the central nervous system) is damaged, as well as the nerve fibers themselves. The damaged myelin forms scar tissue (sclerosis), which gives the disease its name. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing the variety of symptoms that can occur.

I think a far easier explanation is given in the following graphic from the Mayo Clinic:

In Multiple Sclerosis, the protective coating on nerve fibers (myelin) is damaged and may eventually be destroyed. Depending on where the nerve damage occurs, MS can affect vision, sensation, coordination, movement, and bladder and bowel control.

The quirkiness of MS is its unpredictability.  There are as many symptom possibilities, theoretically, as there are nerves in the brain and spinal cord.  But that’s not all.  The progress of the disease can be equally unpredictable.

The MS Society describes four courses of MS – each of which might be mild, moderate, or severe:

• Relapsing-Remitting MS  People with this type of MS experience clearly defined attacks of worsening neurologic function. These attacks—which are called relapses, flare-ups, or exacerbations —are followed by partial or complete recovery periods (remissions), during which no disease progression occurs. Approximately 85% of people are initially diagnosed with relapsing-remitting M
  Primary-Progressive MS  This disease course is characterized by slowly worsening neurologic function from the beginning—with no distinct relapses or remissions. The rate of progression may vary over time, with occasional plateaus and temporary minor improvements. Approximately 10% of people are diagnosed with primary-progressive MS
  Secondary-Progressive MS   Following an initial period of relapsing-remitting MS, many people develop a secondary-progressive disease course in which the disease worsens more steadily, with or without occasional flare-ups, minor recoveries (remissions), or plateaus. Before the disease-modifying medications became available, approximately 50% of people with relapsing-remitting MS developed this form of the disease within 10 years. Long-term data are not yet available to determine if treatment significantly delays this transition
  Progressive-Relapsing MS  In this relatively rare course of MS (5%), people experience steadily worsening disease from the beginning, but with clear attacks of worsening neurologic function along the way. They may or may not experience some recovery following these relapses, but the disease continues to progress without remissions.
  Since no two people have exactly the same experience of MS, the disease course may look very different from one person to another. And, it may not always be clear to the physician—at least right away—which course a person is experiencing.

So, that’s why I describe MS as quirky. 

My own course of MS has been relatively benign.  Except for brief periods of time, I have not needed to be in a wheelchair.  I have had few hospital stays due to MS.  For about fifteen years or so, I had Relapsing-Remitting MS  with many relapses (attacks) and recoveries.  I have described some of the various symptoms in previous posts.  Following a relapse I would usually go into a period of remission, when I had almost full recovery.

For the last few years I have been in what is called a Secondary-Progressive MS phase.  I have chronic symptoms that are what I call “my normal”.  I still have relapses, but never fully recover my previous levels of function.  Some symptoms are merely inconvenient, but some are quite humbling.  Here are some of my symptoms and adaptations:

• Deep fatigue is a constant in my life.  Sleep rarely restores my energy.  I awaken frequently during the night because of muscle spasms and bladder control issues. Most days  I also need a nap in the afternoon. I always sleep on my La-Z-Boy recliner.  Sleeping on a flat mattress gives me headaches,backaches, and muscle spasms. My recliner has a power controller that adjusts the footrest, back, lumbar, and headrest separately.  This allows me to adjust my sleeping position during the night.  I have learned to keep my iPad handy; I may as well be productive during those wakeful hours.
• Because I have very limited energy, I must measure my tasks in terms of energy cost.  I keep a daily written list of tasks, and try to organize them in a realistic schedule.  My schedule can be interrupted at any moment by overwhelming fatigue.  I understand the analogy of “spoons”.  I am definitely a “spoonie”.  If you don’t know the term, read the story here:  http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
• My balance is shaky.  I can walk unassisted in my home, because I can rely on walls and furniture to stabilize my balance. I use a walker mainly for transporting items from room to room.  The seat makes a handy place to carry necessary items from bedroom to office. I never leave home without my forearm crutch.  Distances of about twenty feet unassisted will cause me to drag my left leg.  Even with my crutch, I will start dragging after about fifteen minutes.  I use an electric cart if available.  I no longer shop in malls, but in small stores where I can park close by.  I always use handicap parking.  (Note:  I try not to park in a handicap van spot, because people with wheelchairs need them.)
• I live with chronic neuropathic pain in both legs and feet.  It feels like a bad sunburn with fire ants crawling on my skin.  I am used to it.  Most of the time I can ignore it.  I don’t notice it as much when I am moving.  It is worse when I try to sleep.  Because of the neuropathy, I cannot wear an enclosed shoe.  I wear open-back Clarks.  I prefer socks designed for diabetics, because they are soft and do not have tight cuffs.  I have eliminated all aspartame and artificial sweeteners from my diet, because there are studies that have shown them to cause neurogenic symptoms.  About a year ago I started taking Low-Dose Naltrexone, which has helped significantly with the neuropathy. (I will talk about LDN in another blog post.)
• My eyesight has been drastically affected by MS.  I have had several bouts of optic neuritis, which is common in MS. I need intense task lighting to read and work at my desk.  I had cataract surgery in both eyes in 2012, so my vision was improved for a while, but I needed further laser treatment in both eyes.  Due to MS, I have lost some vision in the lower right quadrant of my right eye.  This means that when driving, I must turn my head to make sure no one is in my blind spot.  It also means that night driving is difficult.  Later this week I will have another laser treatment in my left eye because the retina is not getting enough light.
• I am also developing Macular Degeneration in both eyes.  I realize that I will eventually lose my central vision.  Of all my challenges, this is the one that is the most difficult to accept.  I love to read, to study, and to write.  I must continually pray for faith to trust God’s plan for my vision. My iPad has been an invaluable aid, because I can control the font size as well as brightness on the screen.   I take it with me to church and small-group meetings so I can read my Bible easily, as well as take notes.
• In common with many people with MS, bladder control is a problem that impacts my life day and night.  It is difficult for me to share, but I must wear heavy pads for protection at all times.  I carry extra with me, because I often need them when I am away from home.  I know where every restroom is located in every place I visit, because I will need it about every 45 minutes or so.  Travel is affected.  If we drive long distances, I must stop at least every hour.  I am scheduled to have an Interstim®sacral neuromodulator implanted in a few weeks.  This is basically a bladder pacemaker that help the brain and bladder communicate with mild electrical pulses.  My urologist is hopeful this will help with bladder control.  Here is a link to more information: http://professional.medtronic.com/pt/uro/snm/edu/about/index.htm#.VTZpxyFViko
• My brain is often “foggy”.  When I am in relapse, one of the most frustrating symptoms is that my brain sometimes can’t process quickly, or remember details clearly.  Trying to retrieve a word can sometimes feel like flailing through cobwebs.  I have to make a conscious effort to remember names.  If a person suddenly changes topics in a conversation, I may not follow.  It is helpful if I know the topic before a person gives me details.  I may not be able to process all the details unless I know where they are headed in their conversation.
• I have become sensitive to many foods, chemicals, and scents. 
• My left side is far weaker than my right.  Over time, limping on my left leg has caused my right knee to wear out.  In August 2014, I underwent total knee replacement.  It was a brutally painful surgery for me, and recovery took a full six months because my MS flared.  During those months, the neuropathic pain in my legs was so severe that I could hardly sleep.  In addition, I had severe muscle spasms in my legs.  I could barely walk.  Those were difficult times, when I cried out to the Lord for some relief from the pain.  I took refuge in His Word and His promises.  And I came through – closer to Him than ever.

I am walking much better now that my right knee has healed.  I know there will be more MS relapses.  I know I will likely face further losses in the future.  I am not afraid.  I have the Great Physician as my close friend, and the prospect of complete healing someday in His presence.  I believe God has allowed MS in my life as a blessing and as a ministry to others.

Years ago I adopted the words of the Apostle Paul as my comfort verses:

2 Corinthians 12:9-10
But he said to me,
“My grace is sufficient for you, 
for my power is made perfect in weakness.” 
Therefore I will boast all the more gladly of my weaknesses,
so that the power of Christ may rest upon me.  
For the sake of Christ, then, 
I am content with weaknesses, insults, 
hardships, persecutions, and calamities. 
For when I am weak, then I am strong.

Marie’s note:  I wrote this post a while ago.  I haven’t fallen this year, so far.  Praise God.

I fell again that day. It was not a bad fall. I had been kneeling on the floor, looking in a file drawer. My legs are not strong, so I had to pull up with my hands, leveraging with my stronger right leg. I was fully upright and stable, then turned to walk toward my office door. My upper body moved, but my feet didn’t move in sync, so I lost my balance. I caught myself on the arm of my La-Z-boy chair, but my left upper arm and shoulder fell hard against a cabinet. Today that arm is bruised and tender.

It could have been much worse. I am grateful.

Falling can be humbling!

Falling is one of the hazards of living with Multiple Sclerosis. Over the years there have been many falls. I once broke my left shoulder when I tripped as I walked into church for a choir rehearsal. One year I fell four times in the same month. One of those falls was on our concrete driveway just moments before ladies arrived for our Bible study. What seemed to be a small bump on my forehead resulted in a nasty black eye.

Because my balance is so unstable, I wear Clarks shoes for sturdy footing. (I had to give up wearing heels long ago.) We live in a handicap accessible home and the furniture placement allows for wide, clear areas for walking. When I am among other people, I am always watching the path in front of me. I have to remind the grandchildren not to walk in front of me, but by my side. I have my iPhone on my person at all times – even when I get up during the night. My iPhone is my emergency contact in the event of falling.

 I will say it again. I am grateful.

When I was finally given a positive diagnosis of Multiple Sclerosis, my initial reaction was euphoric. Finally there was a conclusion to the round of doctors and tests! I felt somehow validated. I had researched enough about MS to know what I might expect in terms of disability. I was not afraid. It was easier to face a known “enemy” than to be ambushed by random attacks that some of my doctors seemed to think were in my mind.

Initially, of course, I asked, “Why, me, Lord?” Almost immediately, I said, “Why not me, Lord?” I had spent enough time in Bible study to know that God is faithful, that He is sovereign, that He has purpose in what He allows in our lives, and that He can be trusted.

From the beginning, I made up my mind that I would praise God in spite of having Multiple Sclerosis. I knew that He would give me the strength to endure whatever I had to face.

I was not afraid of living a life with MS, but I had three specific requests of God. I asked Him to allow me to raise my boys. I asked Him to allow me to keep teaching Sunday School. I asked Him to allow me to keep singing in choir and Chorale. I can praise Him with joy. God was faithful to answer all those requests.

It was not many years before I learned to praise God FOR my MS. I believe I would never have learned the sweet lessons He has taught me without MS.

I am a first-born child. I have always been strong-willed and determined. My parents tell a story of when I was about two years old. I had knocked over a box of buttons. My dad told me to pick them up. I refused. It wasn’t that I couldn’t pick them up. It was a toddler power play. I was told again to obey. Again I refused. The buttons were finally picked up. My dad put his big hand around my tiny one and made me pick up the buttons. I’m not sure who won that power play.

Surrender does not come easily to the strong-willed. I was raised in a Christian home and was in church from infancy. I heard the plan of salvation all my life. Yet I did not truly come to the point of surrender to Christ for salvation until I was twenty-three. A serious kidney infection put me in the hospital for several days. Flat on my back, sick, and helpless, I finally had to look UP and confess that I needed a Savior.

With the perspective of sixty-seven years, I can now look back and see that God has used physical ailments throughout my life to get my attention. Our family lived in Beirut, Lebanon, for four years. During that time I contracted Hepatitis A on a vacation in Turkey. I had been a competitive swimmer as a young teen. Hepatitis left me so weak I never returned to competition. I can remember falling several times in high school. Perhaps those falls were early signs of MS. There is no way to know. Hepatitis, nephritis, endometriosis, infertility, Multiple Sclerosis…there is surely a pattern of physical suffering in my life.

The uncertainty of living with MS has taught me that I am not in control of my life. God is in control.

And I say it again: I am grateful.

Note: I am known for being organized. I suppose some of that is innate, but much of my careful planning is due to living with the limitations of MS. I have used calendars and planners for years.

This morning, interestingly, I found calendars from the early 1980’s, detailing those early years of MS symptoms. Looking back now, I find that it was my general physician, Dr. Marcell Jackson, who first mentioned the possibility of MS in May of 1980. I was experiencing a heavy feeling in my arms, pain in my hands, numbness, and problems with balance. Dr. Jackson was a no-nonsense, old-fashioned doctor who treated the whole patient. She first predicted a disease that would take almost three more years to confirm. Dr. Jackson was the first to put me on B-12 injections, with the hope of helping some of the nerve symptoms.

In those early months, I heard many suggested possible diagnoses, including Guillaume-Barre’, post-infectious polyneuropathy, pan hyponordrenergism, parasthesias with demyelination, and the insulting “bored housewife syndrome”.

I went through a good deal of depression, because it seemed the doctors were dismissing my symptoms. Test after test showed results within normal limits. Prescription meds caused side-effects that added to the problem. It was a very frustrating period of time. I was finding out that doctors don’t know all the answers, and that medical testing is not always conclusive.

Meanwhile, the quirky symptoms would come and go. Sometimes I felt fine and had remarkable energy. At other times I could barely walk. Sometimes there was numbness from my upper teeth to the top of my head. Other times, I was numb from my ribs to the soles of my feet. Vertigo, headaches, sleeplessness, and agitation were mixed in with dragging my left leg, stumbling, and veering into walls as I turned corners in a hallway.

It was a confusing time, and I still had two precious little boys to raise. I took refuge in Bible study. I look forward to sharing my spiritual journey in another blog post.

One of the multiple doctors I saw in those early months was a rehabilitative doctor named Robert Fu. Under his supervision, I went through a few weeks of physical therapy. He was kind and helpful, but in July of 1980 could also not confirm a definitive disease.  It was in February 1983, after a pattern of relapsing and remitting symptoms for three years, that I was sent back to Dr. Fu for more physical therapy. I will always be grateful to this kind man who finally told me, “It’s time now to revisit the diagnosis of Multiple Sclerosis.” I could have hugged him!  At last I had confirmation that my symptoms were real and not a product of my imagination!

Dr. Fu then introduced me to the Lofstrand forearm crutch. I confess that my first reaction was one of recoil. The aluminum stick looked so clinical! It seemed like wearing a sign “I have MS”. That clinical aluminum stick shortly became my best friend. Dr. Fu demonstrated the proper way to walk with the arm crutch. I walked from one end of the room to the other repeatedly until I understood the mechanics of the motions. Suddenly I didn’t have to drag my left leg. I wore the crutch on my right forearm (my “good” side) and then walked normally. It was amazing! It didn’t take all my energy to walk a few feet. I had balance and secure footing, and I could walk much faster.

I have walked with an arm crutch ever since. It is funny how that crutch caused different reactions among my friends. Some were a bit shocked at first, but accepted it as normal. The more playful ones teased me about running races with them. A sensitive friend actually avoided me for a couple of weeks because she didn’t know what to say to me.  Her sweet spirit and prayers for me have been a great comfort ever since.

Now, over thirty years later, I have a much classier looking arm crutch. It is light-weight and bronze in color. It is so much a part of me that people identify me with it. My husband Jim says I can walk faster than he can. I’ve learned to push forward with the crutch as I swing my left leg forward, so I actually can walk quickly for short distances. Now when I see other people with canes and crutches, I usually smile and ask them if they would like to race!

That very same crutch that announces my limited mobility has also become a tool in witnessing for the Lord.  Many times people will ask if I hurt my leg.  I am able to tell them proudly that I have Multiple Sclerosis. Their common reaction is immediate sympathy.  Then I am able to say, “God has been so good to me.  I am doing well.  He has taught me many wonderful lessons through MS.”

I love to share about the goodness of my Lord!

Note from Marie:  

Originally I posted my MS story on another blog.  It offered with transparency and humility.  Those who live with chronic illness will relate to my story.  I hope in the future that others will share their stories here.

I don’t know why I have had such a hard time putting my story in writing.  I have lived with Multiple Sclerosis for decades, and freely talk about my limitations.  I walk with an arm crutch because distances of about 30 feet will cause me to limp.   I drive a car with handicap plates.   I use an electric cart in big stores.  It’s obvious that I have mobility issues.  I have often counseled individuals with newly diagnosed MS.

The problem is that I don’t quite know where to begin my story. Let me start by saying that MS is a quirky disease, and every MS person I know has a different set of quirky symptoms that can appear at random.  When most people hear of Multiple Sclerosis, they envision a lifetime of wheelchairs and handicap assistance. Though true for some, many of us have symptoms that are not visible, but which limit our lives significantly.

My MS story begins in Anchorage, Alaska.  I’ll describe the medical story here, but will blog about the family and spiritual lessons in other posts.

Jim and I were married for almost six years before our first son, Scott, was born in February 1977. Years of infertility, surgery for endometriosis, counseling with my physician, and hundreds of prayers prepared us to welcome our first-born with joy.  He was born a month early.  I lost the baby weight quickly, and had the usual new mom adjustments.  Scott was a delight, and after a couple of years we wanted another baby.  We began another round of basal thermometer charts to help with fertility, and were thrilled to find out we were expecting!

We welcomed our son Chris in January 1980.  This had been a difficult pregnancy.  I was exhausted.  I had frequent Braxton-Hicks contractions throughout the third trimester.  In early December I was admitted to the hospital for premature labor.  I was put on bed rest to protect our baby. Jim was working a night shift at Anchorage International Airport field maintenance.  For our safety, I stayed at my parents’ home while waiting for our baby.  My mom (Nana) took care of our active toddler and tried to keep me lying down.  Jim would come see us when he woke from day sleeping.

Chris was also born a month early, after a precipitous delivery.  Labor was very quick and I felt pretty good after delivery.  We went back to Nana’s while I recuperated.  I was up on my feet, but was feeling some odd numbness and tingling in my left arm and hand.  I attributed my fatigue and weakness to the pregnancy, a toddler, and a new baby.

We planned to take our little family home three weeks later.  Jim carried baby Chris down the steps in his carrier.  I followed him with the diaper bag, and little Scott was behind me.  Near the bottom of the stairs, my leg suddenly buckled, my ankle rolled and I fell the rest of the way down the steps.  I could not stand on the injured ankle, so was carried by ambulance to the hospital.  A badly sprained ankle and tingling numbness in my legs sent us back to my parents’ home for another few weeks.

Something was not right.  Limping on a sprained ankle didn’t explain my loss of balance.  My hands were so weak I was afraid I would drop my baby.  I couldn’t seem to recover from exhaustion, despite lots of sleep.  I had plenty of help with the boys, I didn’t even have to prepare meals or take care of the house. Again I lost the baby weight quickly but I felt drained, tired to my bones. The only thing I could do was nurse our baby and play gently with our toddler.

We finally took our family home, and I learned to live with the symptoms.  When Chris was ten months old, we made arrangements for someone to watch the boys while my mom and I flew to Virginia-Mason Clinic in Seattle for a full battery of tests. These included a spinal tap, nerve conduction velocity, evoked potentials, and electromyogram.  I was even given a psychological evaluation to determine if I was imagining the symptoms!  The tests showed some numbness and loss of nerve conduction, but because the symptoms were sporadic, no diagnosis was made.  I flew home with a severe spinal headache which, yet again, put me on bed rest at my parents’ home for a week.

For the next three and a half years I went from doctor to doctor, trying to find out what was wrong with me.  A bout of severe eye pain sent me to the ophthalmologist, and was diagnosed as optic neuritis.  Weakness in my legs was dismissed by an orthopedist as “bored housewife syndrome”!  Because symptoms would come and go, it was difficult to find a diagnosis. Recurrent bladder infections were a nuisance.  Fatigue was a constant.  Migraines were appearing frequently.

I even questioned whether the problem was in my mind, not my body. These were the days before home computers.  Internet resources were not available yet. This was before the widespread use of Magnetic Resonance imaging.  I had to rely on the few books and articles that could be found locally.  I read everything I could find at the library.  I determined that I would find the diagnosis – whatever it was.  I’d rather know the “enemy” than to fear it.

I began thinking about Multiple Sclerosis.  I wondered how I would be able to raise two active boys while dealing with MS.

1983 – Chris and Scott with our miniature schnauzer puppies