Tuesday, July 17, 2012

Happy Anniversary?

Last month, I had an anniversary of sorts. I joined the ranks of the admitted at Providence Hospital in Everett on Tuesday, June 1, 2010. On the morning of June 2, just as I stabbed a fork into my deeply desired hospital pancakes, my neurologist walked in to give me a definite diagnosis of Relapsing-Remitting Multiple Sclerosis. Breakfast was over.
Although I just had my 2nd “anniversary” last month, I approximate that I’ve had this degenerative disease for at least 18 years. It stayed mostly hidden until manifesting unmistakably when my 5th child, Rose, was 6 months old. I used to separate my life into two sections: before kids, after kids. Now I can’t help but separate my life into two new sections: before MS, after MS.
I’ve compiled information, some from various websites and some from memory, into a “report” so that my loved ones can learn about the disease that guides most of my activities. I truly hope everyone I intend this for will read it, and perhaps even pass it along to others who may wish to learn about Multiple Sclerosis.
Multiple Sclerosis (MS) is an incurable disease involving the immune system and the central nervous system. The immune system defends the body from attack by micro-organisms such as bacteria and viruses. In the case of MS, the immune system attacks part of the body itself: the nerves. MS occurs when the protective sheath (myelin) around the nerve fibers in the brain and spinal cord becomes damaged, causing random patches called plaques or lesions. These patches distort and interrupt the messages that are sent along these nerves. ‘Sclerosis’ means scar, and the disease is labeled ‘multiple’ because the damage usually occurs at a number of points. The effects are varied; no two people with MS will have exactly the same symptoms. MS is not contagious, but it is progressive and unpredictable. The trigger to the disease has not yet been discovered, but it is thought that genetic and environmental factors are involved. Research so far has found that in nearly two-thirds of cases, a relapse has been preceded by a viral illness. However, many treatments and medications are available to ease the symptoms and modify the course of the disease.

An estimated 2,500,000 people around the world have multiple sclerosis. These people are generally:
*Young adults – symptoms first appear between the ages of 20 and 40 years.
*Female – 70% of people with MS are female.
*Caucasian – 98% of people with MS are Caucasian.
*Living in temperate zones – MS is generally more common between latitudes 40° and 60° north and south of the equator.
*Have a relative with MS – between 10 and 20% of people with MS have a relative with the disease, suggesting a genetic link.

(I was diagnosed a few weeks before my 40th birthday. I live in the temperate climate of the Puget Sound. I have a first cousin with MS, and possibly relatives in previous generations with "mysterious illnesses" that had them in wheelchairs.)

More than 50 symptoms are linked to MS, and each person develops symptoms differently. They are varied and unpredictable. MS can damage the central nervous system in many different locations, which means no two people will share exactly the same symptoms or exactly the same intensity of symptoms. Many of the symptoms mimic problems that occur with other diseases, and usually come and go. This can create misunderstanding or dubiousness on the part of people who deal with others who have MS, since a person with MS could feel “just fine” in the morning and barely be able to function by afternoon, or vice versa. 

Some of the more common MS symptoms include:
*Blurred or double vision (from optical neuritis)
*Numbness or pins and needles in extremities (“parasthesia”) 
*Weakness in the arms or legs
*Loss of balance
*Tendency to drag one foot (“foot drop”)
*Loss of coordination
*Extreme fatigue
*Continence problems
*Hand tremors
*Loss of mobility
*Problems with or changes in memory functioning
*Speech difficulties and slurring

MS has different forms and progression. Some people with MS may become seriously disabled. Others may have one or two attacks and then remain relatively symptom free for the rest of their lives. The frequency and severity of attacks cannot be predicted.

(I experience varying degrees of parasthesia, weekness in my arms and legs, loss of coordination, fatigue, memory loss, and speech difficulties...so far.)

There are four different classifications of MS:
*Relapsing–Remitting (RRMS) – 85% of people with MS start with this type of disease course. Acute episodes of neurological symptoms occur, which last for days, weeks or months before completely or partially resolving. The intervals between attacks can vary widely but, on average, occur every one to two years.
*Primary Progressive (PPMS) – affects around 10 % of people with MS from the onset. These individuals experience no relapses but suffer a gradual increase of disability, which does NOT recover or reverse.
*Secondary Progressive (SPMS) – occurs in individuals who started with Relapsing–Remitting MS, but their relapses diminish in frequency or cease altogether. HOWEVER, disability continues to accumulate. As of several years ago, about 50% of people who start with Relapsing–Remitting MS develop Secondary Progressive MS after 15 years. However, with the use of disease modification drugs, this percentage has dramatically decreased.
*Progressive Relapsing (PRMS) – this occurs in about 5% of people from the outset, with relapses occurring and disability accumulating between relapses.

Diagnosis and treatment:
Most of the symptoms of MS can also be caused by other conditions and do not automatically mean a diagnosis of MS. As yet, there is no single test to diagnose MS. A number of specialized tests may be necessary: 
*magnetic resonance imaging (MRI) of the brain and spinal cord, usually with and without an injection of contrast dye
*a neurological exam to observe functioning of the cranial nerves (these control the senses, as well as how you talk and swallow) in coordination, strength, reflexes, and sensation
*a visual evoked potential test (VEP), during which electrodes are attached to the scalp and connected to an electroencephalograph (EEG) to record brainwaves in response to a series of checkerboard patterns displayed on a screen
*a spinal tap, during which a needle is inserted into the spine at a specific spot between the vertebrae to collect cerebrospinal fluid (CSF). The fluid is sent for evaluation, looking for the presence of oligoclonal bands (an increased number of certain antibodies) -- an indicator of increased immune activity in the spinal fluid
*blood tests to rule out other diseases.

(I had all the tests done, and I undergo an MRI each year in July to check any progression.)

There are two basic rules for diagnosing MS:
*The person must have had at least two relapses (an episode where symptoms were present). These episodes must have been separated by at least one month.
*There must be more than one lesion on the brain or spinal cord.

(I have had three episodes, but my “big one” was the attack that led to my diagnosis. As of last year, I have 10 lesions in my brain and one large one on my spinal cord.)

Diagnostic Categories:
*Negative: Negative means negative. You don’t have MS. It is possible for the doctor to give this diagnosis only when another definite diagnosis is made that can account for your symptoms.
*Possible: This means that you may have symptoms that look like MS, but your tests are normal. No other diagnosis which accounts for the symptoms has been confirmed.
*Probable: Many people fall into this category when they are first seen by a neurologist. You may have symptoms that look like MS and have had two separate episodes separated by at least a month, but normal findings on an MRI. You could also have an MRI that showed only one lesion in your brain or spine. In this case, your doctor will probably recommend repeating the MRI after a certain period of time (for instance, 3 months) to see if any other lesions appear. Depending on how certain your doctor is that you really do have MS, he may recommend that you consider starting an early therapy.
*Definite: Your case fits the diagnostic criteria above. You have had at least two attacks, separated in time, plus at least two areas of demyelination.

(My diagnosis is definite.)

A popular saying in the MS community is, “I have MS, but MS doesn’t have me!” This is a bit too Susie Sunshine for the likes of me, because you bet I feel like it has me—often. I know what all those people are trying to say, however: don’t let the MS diagnosis define WHO YOU ARE. That’s a tall order for some, including me. My symptoms are a burden on my family, harming my mothering and my marriage. I must fight like crazy to keep it from doing real damage. If I give in to the moods, pain, discomfort, disabilities, etc., I let it hurt everyone. So my job is to acknowledge it, communicate what I need, and not let it take over. Tricky!

Friday, April 6, 2012

Thoughts On The Reunion

I had hoped to write more on the Greene Sibling Reunion last summer, but I got only so far before I just quit. I am now hoping that my siblings who may be reading this blog will reply with their own thoughts. Here are mine.

Clusters of dead aspens reach toward the pure, lustrous azure sky like desperate, dexterous, multi-fingered hands.   Live aspens bow to me with each blow of the wind, showing me their joy at my visit.

Mountain bluebirds!  Vultures!  Aspens!  Rocky Mountain Range!  Mesas!  Red dirt!  Where’s my camera...but it can’t capture my excitement at these first experiences.

Stones in colors not found at home blanket random portions of the mountain floor.  River rock, they say...which river?  I want to go there.  Think of the number of stones...

Faces change expressions here, there.  So many faces!  Split-second switches from puzzled to joyful, peaceful to jestful. 

My birthday.  My extended family.  Pretty baby.  Birthday song—for ME!  Bounteous, blazing bonfire in the darkest of nights.  Folding chairs.  Starbucks cards.  Laughter.  Late.

My MS in Colorado: like a group of animals finding a faulty latch on the gate, running past the sleeping zookeeper—the keeper of their incarceration—relishing every moment of their newfound freedom in the midst of unknown surroundings, knowing the bars will hold them again once morning breaks and the zookeeper corrals them into the cages.  I return home.  “Naughty little animals…don’t you know you belong here now?  In you go…”

Wednesday, March 28, 2012

On Cleaning The Car

"FILTH. UTTER FILTH." Repeating myself with each car door I opened, rags and sprays in hand, I was prepared. It was time to clean the Dufresne limousine, our Honda Odyssey. Not that I was dreading it, mind you. I love the feeling of a clean car. In fact, I prefer to clean it myself. I know where all the cracks and creases are, and I CARE about cleaning them. I remember when it took my mother by surprise when I finally "grew up" and began keeping my surroundings clean. Of course, my surroundings aren't just mine anymore...with seven people living in the house, cleanliness is a luxury. The car, however, is considerably smaller than the house, making it an easy target for my desperate need for order.

First step: take out the contents. This is a harrowing and humbling experience for me, since I am a borderline pack rat (no giggling, please) and I feel "safe" having every item I could possibly use (and some I will realistically never use) at the ready during transit. Unfortunately for the kids, I place several "packs" of these items near their assigned seats in case I am driving and the need arises for a particular item. So I removed all of these things, placing them carefully on a pre-cleaned concrete step next to the parked car. Wow...what a bunch of stuff. Don't think about it. Keep going.

Second step: clean off the car seats. I have a 5-point harness seat still for Rose and a booster seat for Peter. Although the official rule is no eating anything but Cheerios and Puffs in the car, somehow we manage to eat our fair share of on-the-run french fries, candy, toast, milk...snacks. I do appreciate the leather on the seats more than I thought I would when we purchased the van a bit over 2 years ago. (Did I tell all y'all about my experience on HWY 2 when my van died on the way to pick up the big kids from school--and the babies were with me???) Ugh...look at all the CRUD in the cracks. Don't think about it. Keep going.

Third step: dust/wipe dash, doors and controls. Not long after we bought the van, Joe used some weird cleaner on the dash. It took off the finish from about 1/4 of the surface, leaving a dull section that continues to haunt him. "I wrecked the car," he stated flatly to me afterward, making me think that he actually DID wreck it somehow. Nope--he just ruined some of the prettiness. "Better than cat urine," I think I said after I saw it. He was not amused. Now, I just clean the dash instead of attempting to buff it to a shine. In a halfway shiny state, it's a harsh reminder to the poor dude of his failed attempt at buffing it himself. He hasn't cleaned it since. That's OK, because like I said before, I like cleaning it myself. Even if it's not perfect anymore. Don't think about it. Keep going.

Fourth step: wash windows inside, along with the "holders" below them. This is the most entertaining job, since I discover all kinds of "secret" designs and messages on the glass. During rides to school on mornings that produce lots of fog on the windows, Edward, Benen and Peter (individually) compose various statements and drawings for their eyes only, afterward watching as the fog dissipates and leaves the window seemingly untouched. Up close, however, a keen eye can see these clandestine artistic pleasures. And they are pleasurable to see. There are too many receptacles in our van, though. Despite my being a BIG fan of receptacles (ask my sisters), the job of washing all these is tedious and takes dexterity I no longer have in abundance. Plus, it's GROSS. Don't think about it. Keep going.

Fifth step: vacuum. I like this part the best of all. I think my fondness stems from a general enjoyment of cleaning floors. It's the most noticeable, appreciated--and therefore most satisfying--job in the house and pretty much anywhere else. But there are other benefits. I get to see if any particular kid is eating things I don't know about. I can easily blame any kid for his own mess. I find lost earrings, pencils, notes, etc. that have been missing since the last vacuum, making me the hero--sometimes. However, there are occasions when I have come across rotten bits of food (reference to second step) that are in several states of decay/mold. Don't think about it. Keep going.

Sixth step: once-over. This is my last chance to look at everything I just cleaned and decide if it's "good enough" or not. By this time, I'm totally wiped out from stretching and leaning in directions my body isn't used to going. All I want to do is rest. Don't think about it. Keep going.

Seventh step: reload. The last step, this one is the BEST. Restocking the car means I am in command of the items going into it. This gives me tremendous power, which I like. Sounds minor, but for me, it is calming and gives me a secure feeling. Is that bad? Don't think about it. Keep going.

It's 6:00 pm, and it took me 1 1/2 hours to clean the van. DONE. What an accomplishment! What satisfaction! What's for dinner? Uh-oh...

Don't think about it.

Sunday, March 25, 2012


I recently rediscovered a photograph of me and Joe right after his graduation from Gonzaga University. His dad took the picture as we were standing on the sidewalk outside Joe's house that he shared with 3 other great guys. We had just come from the graduation ceremony (loooooong), and Joe is wearing his orange engineering swag around his neck, above the black gown. Magna Cum Laude. Electrical Engineering. Girlfriend attending. Parents proud. Roommates ecstatic. Sun shining. The picture shows two happy young adults, smiling from ear to ear, holding each other side-by-side, fresh and full of promise. Was I really that cute and spry? Hmm. Seems to me I may have been!

I was about to turn 21, and I had no idea where my life was going. I had Joe, but he was leaving in a couple of days to begin working full time at Boeing in Renton (near Seattle) while I kept my job at Nordstrom (in Spokane). My mother had left the house for her first teaching job in central WA the previous January, so I shared the house--and the house payment--with my brother, Michael. Otherwise, I was ALONE.

Strange thing about  being alone and an extrovert: it is lonely. I enjoyed having my own "stuff" around me, but I really missed my family and wanted more regular companionship. This was scary, since I resorted to staying out with coworkers into the night to allay my loneliness. I had a great time unwinding with the people I got to know at my job, and I cherish those days and nights. But something nagged at me constantly: who am I? I knew the Catholic girl, the daughter, the sister, the friend, the girlfriend, the employee, the idealist, the sensitive. Who else? Where will she go? What does she want? This was tough. It would get tougher as I searched for the answer.

I was sure as ever that I didn't want to get married "too young", but even surer that I wanted to marry that Joe guy. Although we parted that May with tears and uncertainty of the future, OUR future, I knew the choice was clear: I will marry him. We were bonded. It was a matter of time. I needed that time to figure out what I wanted for myself. Yeah, yeah...kids. That was a no-brainer. But WHAT ELSE? Anything else? I looked around at the people I knew and sought inspiration from their lives. People who married young and yet found the time, amidst baby bottles and dirty diapers, to finish college and get a respectable job. People who waited until college was finished before marrying and having families. People who didn't even have prospects of marriage and carried on with life, making good things happen for themselves. People who may have done any of these things, but were unhappy, because it wasn't the right choice. I had to make the right choice. I did what I knew I could do: keep working and let time unfold its secrets. Sounds like a cop-out, but it actually worked! I really enjoyed my job, Joe and I visited each other at least once a month, I moved into an old apartment near work, and continued building my feeling of independence. By the time Joe and I got the nerve up to GET MARRIED, I felt like a real, live, grown-up woman. My mother used to say, "You're just a late bloomer, honey...and that's ok!" I totally believe it.

All's well that ends well, as Shakespeare's Helena said. She was pretty much right...although perhaps I shouldn't compare my life with hers! But the tenor got the girl, they made 5 great kids, have a big, God-filled house with lots of love and noise, and everybody gets what he needs. The future is wide open.

Saturday, March 24, 2012

My Ten Goals

Here's my official update on the ten goals I set last summer:

1) I did have a vegetable garden. I grew bush and pole beans, three different kinds of peas, and cherry tomatoes. It was small but lovely. The weather didn't really get very hot for any length of time, so the tomatoes disappointed me a little bit. This year, I will plant different things!

2) I did NOT learn Yoga. I did bring my MS Yoga book to CO, but time just didn't lend itself to it. I still want to take on that challenge, especially now that summer is approaching once again.

3) I did, indeed, crank up the air conditioning any time I darned well felt like it. There weren't very many super hot days, but anytime I felt uncomfortable I just turned it on. No explanation to anyone. Just turned it on. So there.

4) I did not learn to make Lucy food. Still wanna. I am hoping she will be visiting in about 2 months for a couple of days or so, and I intend to strap her in the kitchen with me for a tutorial. I'll be taking notes--and maybe some video!

5) We all DID pack in the car, the 7 of us, and visit the Spokanites for Benen's birthday in July! We spent a few days with Angela's family (what's left of it!) at Black Lake, which was heavenly. Peter got over his fear of water, Rose verified that she is a daredevil and is NOT afraid of the water, and the other kids had a good time with their cousins. Catherine wants to live there! I can see her living in and amongst the wilderness someday.

6) I did not attend Mass regularly on days other than Sunday. I just......didn't. Yet another thing I'm planning on doing this summer. The big kids are so much more accountable and capable as babysitters, so I have few good excuses.

7) Although I failed at teaching the kids some Latin during the summer, when the chance came for the big kids to take it at school for 11 weeks, I jumped! They didn't learn much, but even the exposure was educational.

8) I DID make weekly dinner menus. Most of the time, we actually used them, too. I made sure to have the kids' lists of dinner they like on the refrigerator, so when there was an awkward day we could shift plans easily. I am still doing it--for the most part!

9) I did not read a novel last summer. I think this disappoints me more than any other unfulfilled goal.

10) I DID train the kids to do more housework. With the start of school, I realized that there is NO WAY we can continue the same level of kid participation in housework. Too much school work. There are no assigned, regular jobs...which is a bad idea. Even the "your job is to take out the garbage EVERY DAY" commands/follow-through is better than nothing. I'll work on that. Hard.

Not TOO bad, right? All ten things I originally chose are things that can be ongoing, and I plan on trying again! How did YOUR summer goals go?

Sunday, February 19, 2012

My 41st Birthday


I began writing this post about a week before my hand injury. I just finished typing the remainder of the story, and I'd like to share it with you now!

My birthday was June 24, which was during the Greene Sibling Reunion at my brother's mountain cabin in CO. Now, the birthday before this one pretty much...umm...well, SUCKED. That's really the only way to describe it. No offense to my husband and kids, of course.  They tried hard to create a nice celebration for my 40th birthday. However, on the heals of my big ol' MS attack and diagnosis, the big ol' 4-0 was not exactly something I planned a big party for...so it was just the 7 of us here at home. THIS year, I was spending the day without my little family, but I got to spend it with my HUGE, extended family.

The day began nicely, with most of the reunioners already at the cabin. People greeted me with happy birthday wishes and granted me lots of hugs and smiles. NICE! As the day progressed, I had a sneaking suspicion that "something" had been secretively planned for later. My sister, Monica, created two LOVELY platters of cakes and fruit for everyone's pleasure, topped with a birthday candle (it read, "OLD"). That, in itself, would have been great. But later, when darkness fell and everyone was settling down, the group congregated around the raging firepit. I was the last to arrive, having just checked in with my kids/husband on the phone (ya' had to walk a bit up the road in order to get a cell signal). Within seconds of my sitting down, Angela called me (loudly): "Mara?!" "Yes..." "I have something for you." She held out her hand and gave me a Starbucks card with FORTY-ONE DOLLARS on it! Oh, my goodness. But wait--there's more. She introduced person after person in the same way: "Mara?!" "Yes..." "So-and-so has something for you." I ended up with SEVERAL cards with 41 bucks on each one. HOLY CRAP! I STILL can't believe it. I was shocked, grateful, excited, greedy and giddy all rolled up in one. What a night.

By the way...it took me and the kids (I HAD to share my riches, right???) three short months to use up ALL the cards. It was REALLY fun.

Ummm...What Was That Ready-For-Action Part Again?

I use the word "fate" occasionally, not because I believe in it literally, but because sometimes it's the best brief description for something that happens for no apparent reason. Being a believer in the many and active works of the Holy Spirit, I see sorrowful times and tragedy as opportunities to grow in spirituality and faith. Not everyone I know agrees with that philosophy, and there have been moments when I fail to see it myself. I do believe that each occasion of suffering is a necessary part of the journey to Heaven. We feel some of the way Christ felt. We understand others' suffering. We have a chance to be an empathetic comfort when those around us are suffering. Isn't that what we all want: to be understood and comforted in times of trouble?

All I wanted to do that "fateful" afternoon is bake some bread. Dinner was to be skimpy, and I wanted to be sure the kids had enough to eat. I rushed to get ingredients out, then picked up the new Kitchen Aid mixer I had received as a birthday present just weeks before to replace my broken one. It was beautiful...shiny cherry red, gleaming glass bowl...beautiful. (That was a foreshadowing.) As I carried it to the counter from the shelf, the bowl slipped from the base's threads. I hugged it to catch it from falling. It jerked upward against the motor. The bowl broke into two pieces that collapsed into each other. My right hand, which had been holding the bowl on its side, followed the collapse. The broken bowl sliced into my hand, from my index finger straight across to my pinky, right below the joints that connect my fingers to my palm. Immediately, I dropped the whole thing as if it were on fire. Flexing my hand outward, the cut at my index finger looked like a fish gill. Oh, no. Oh, NO. Although there was no bleeding yet, I instinctively grabbed a paper towel, got it wet, and pressed hard on my hand. Realizing it was a bad cut (the worst I had seen on my own body), I got a cloth towel and pressed it over the paper one. I spent a couple of seconds selecting which one--the reddish purple will do, I thought. If the thing bleeds, no one can tell. ALWAYS THINKIN'. My kids were all home, and my niece, Kiera, was at our house (she drives), but I couldn't get a hold of Joe. I imagined he was on his way home (4:30) and his cell phone was turned off for some reason. My next door neighbor drove me to the Urgent Care Clinic about 10 minutes away, and Joe met us there. The triage nurse let me in before the other patients, and that's about when I started freaking out. Pain set in. And fear. Lots of fear. I couldn't curl my finger. WHY? I soon found out why, because when the attending physician dug around in my wound (I had been given painkillers by IV and syringe), he spoke the dreaded words I knew he would: "Yup, you cut both tendons in there. I am trying to grab 'em to get the ends sewn up temporarily, but they are too far down in both directions." The cut severed the two flexor tendons in my right index finger, but missed any others. "You will have to get those fixed in surgery." My fear turned into panic. SURGERY? I had never had surgery in my whole life. Five childbirths, two spinal taps, some MRIs, wisdom teeth removal, and a broken tailbone...but no "real" surgery. Yet, two miserable days later, I went under general anesthesia to get my poor flexor tendons reattached. It was successful. As I left the surgery center that afternoon, I embarked on my long journey of pain, immobility, helplessness, physical therapy, and impatience.

Now, all of you who are reading this might be asking, "Why is she telling us all this?" I am hoping to convey to you something very personal and even devastating in my life. My MS has already shut certain doors for me, but this hand injury locked a few of them. Dexterity, hand/arm coordination, and leg/foot strength are things I lack these days, replaced with parasthesia (pins & needles), neuropathy(numbness), and weakness. Usually I am pretty resolved to accept it, but frustration and disappointment creep in occasionally. It would be nice, for example, to touch my little Rose's face with my fingers and feel her sweet, soft skin the way it really is, or to be able to walk around shopping all afternoon again without a thought of the pain later. These are things I have decided to accept and have given up to Christ...but it doesn't mean I don't miss them from time to time.

I began Occupational Therapy twice a week a mere 7 days after surgery, then went to once a week after a few months. I still go once a week. I am slowly improving my ability to curl my finger, but after 6 1/2 months, I still work hard at it. They all tell me it takes a year or more to "peak". That's August. It's now March. Long, long time. But...every day I try, try, try. My persistance and perseverance is slowly paying off. The payoff is seen in my dexterity, as well as the patience I've taught myself and my kids. I truly believe my suffering is making us ALL better people.