MS Walk

I am fortunate to work with a group of caring, generous people. This may be only my second year at this school, but I feel very thankful for the opportunity to work here. For me, the MS Walk each year is a time I am especially grateful for the kindness of my colleagues.

Though I never hide the fact that I have multiple sclerosis, I tend to not make a big deal of it, either, especially with people I am just meeting. Somehow, though, several teachers at school did learn of my MS early on. One teacher had recently been affected by the disease as well, with her sister being diagnosed. This teacher formed a team last year and this year to walk in the Northwest Arkansas MS Walk. Several faculty and friends joined with us on a cold Saturday morning to walk in honor of her sister and me and raise money for the National MS Society.

After several venue changes, including on the University of Arkansas campus (on the same day as the ESPN-broadcast spring red-white football scrimmage), the walk took place at Lake Fayetteville. This turned out to be a great location, because it had good parking and a wide-open space for gathering, as well as a pretty location to actually walk.

 

Our "Woodland Walks" team arrived early for a photo, but wound up huddled together due to the chilly temperatures. Shawn had layers on, but had not brought a jacket. One of the teachers had a sweathshirt in her vehicle that she let him borrow. It was too big for him, but he loved it! (Notice the hole in the knee of the sweatpants. Both boys wound up with holes in THAT knee for some reason.)

He also loved the donuts the walk coordinators provided.

A couple of teachers brought dogs along. (We had plans for the afternoon, so our dogs stayed home. I was also on my own with Shawn, so I didn't want the extra work!) Shawn's dog-loving nature meant he was quick to play with them. He talked about sweet Lola long after the walk.

Once the walk was underway, we started off with some friends at the same pace as the rest of the walkers. It was a pretty brisk pace, though, and not one I felt I could keep up for long. Though I enjoyed walking and talking with my friend, it wasn't long before I needed to slow down. I took time for some photos on the path as a way to keep it slow.

 

The walk was set up so that you could walk 1/2 mile, then turn around and return to make a full mile walk. There were also longer options. I didn't want to push it once I started feeling the strain in my left leg (the one that tends to "go out" with fatigue due to the MS). Fortunately, since MS is known for stopping people from walking at all, I believe people understand that someone with MS may not make it the full mile!

On the way back I photographed the other side of the bridge, with a small stream and bluffs. Northwest Arkansas is so pretty. (Yes, I may have gone overboard with the number of photos. My dad also did that with scenery and flowers, so I believe it's natural for me!)

I feel so honored to have such caring friends and colleagues who would walk partially in my honor.

Deer Camp

I've become more of an "inside kind of girl" over the last several years, particularly since being diagnosed with multiple sclerosis and experiencing the accompanying heat intolerance and challenges with temperature fluctuations. I think it's sometimes hard for my boys to believe that Mommy really did grow up spending more time outdoors. I've had to be careful, but we have been able to take some camping trips and do some fishing, so hopefully they can learn to enjoy these things anyway. Of course going boating with Papa and Nana also means tubing, which they already definitely enjoy. (They were shocked to see some pictures of Mommy as a teenager water skiing recently, though. It seems they think Papa has a boat and tubes just for them!)

This past year we were able to introduce Tyler to another outdoor activity that's always been meaningful in my family--hunting. Although Nana has never hunted, and I only went a few times as a teenager and young adult, deer season and squirrel season were always important parts of the year in my family. My dad, my grandfather, my dad's cousin, and some other men loved spending the time together in the woods almost as much as the hunting. With my grandfather and dad's cousin no longer with us, the love of hunting didn't change, but the loss of the important hunting partners certainly dampened some of the comradery that these trips allowed.

HoneyBear did not grow up hunting, but he has always adored being outdoors and quickly learned to enjoy hunting trips. He has tried to join my dad hunting several different times since we married, but time off work has rarely worked out. Since he works with several hunters, he can't take off the times when my family spends time in the woods, and trying to coordinate the boys' fall sports and other things just gets crazy.

This year finally worked out with an after-Christmas hunt. To make it even more special, this year Tyler joined in to begin learning about his hunting heritage! He had already learned to enjoy his Red Rider BB Gun, but had not had any other opportunities to be involved in guns or hunting. HoneyBear and Tyler went through hunters' education classes in early December. It wasn't the most entertaining class for Tyler, but he did pass the test and seemed to learn some things. He especially noted the information on ATVs, since riding Papa's 4-wheelers has become a favorite activity at Nana and Papa's house.

For the hunting trip, we traveled to Little Rock late Christmas Eve for Christmas at Nana and Papa's, then on December 26, the first day of the after Christmas hunt, we all traveled down to Camden and the deer woods. HoneyBear towed the 4-wheelers, and Papa towed the camper. 

HoneyBear's Christmas present seemed to be appreciated--a Hogs hat perfect for hunting.

HoneyBear looked on as Papa connected the trailer with the 4-wheelers to our truck.

Tucker and Roly enjoyed chasing Papa as he headed around the camper.

Since it was a pretty chilly day and Nana and I both were feeling poorly, once we got there she and I settled in to the camper and napped (which meant there were no photos taken at camp). Shawn enjoyed being in the campsite, and wandered around collecting rocks and just being all boy. Tyler got a chance to go over with HoneyBear and Papa to sight in the gun he'd be using and do some shooting. 

After a brief moment of being directionally challenged, Shawn, Nana and I left the guys in the woods and headed back to Little Rock. They wound up not seeing any deer, but did enjoy the time together in deer camp.

Being Reminded

As a wife and mother, I spend a lot of time reminding people of things.

"Don't forget your backpack."

"Remember to feed the dogs."

"Don't forget we have karate tonight."

"Can you please put your keys where you can remember where they are?"

Some might call these reminders closer to nagging, but in our case it's the way we can actually get things done. The problem is, I am not as good at reminding myself of things. I know this is normal. What may not be normal, though, is how easily my disease takes over and causes me to forget things that I should have no problem remembering.

More importantly, when things are going well for me it's easy me to forget how quickly my health can go bad. The past few weeks I've had a strong reminder of how important it is for me to be careful with my disease.

It started with just a little too much activity. I did too much bending to plug in equipment. I did a little too much fast walking, rushing to get things fixed for a meeting already in progress. I had a little too much worry, spending a lot of time concerned about things I couldn't really control.

Then I had my medicine.

My medicine is a miracle drug for me. I believe strongly that I would not be as mobile and active as I am, even with my limitations, were I not able to take this medicine. It is a pretty strong drug, though, and must be carefully monitored. With the monitoring, the IV infusion takes about 3 hours. I usually miss about an hour and a half of work each month for the medicine. Although I make it up by working late throughout the month, and just getting my projects done in general, I am still out of the building when teachers and students are not. I typically try to have the infusions on Friday afternoons, since that's a time during the week that tends to have the fewest things missed if I am out of the building.

This month, though, I opted to have my infusion on a Monday. We were out of school for a holiday, and I thought it would be good to avoid missing any work and take advantage of the day away from school.

No one reminded me of how much this drug affects me.

Since I typically have the infusion on Friday afternoons, I rest over the weekend. Resting on Saturday or Sunday afternoons is a part of our adaptation to having multiple sclerosis; in our family this is a normal, necessary part of life. So even though I know that after having my meds I'm more tired than usual, I usually think of the day of the infusion as a day I need to rest--about 4 hours after it's over, actually.

While this is true, and my body shuts down to deal with the medicine about 4 hours after the infusion, I've been reminded that two days after I have my medicine I am forced to rest. This is not just a case of being tired. Multiple sclerosis laughs at "tired." It laughs at "exhausted," even. The term used most frequently is "fatigued"--as in MS fatigue, which is one of the potentially debilitating affects of the disease.

After my medicine, my body took MS fatigue to a new level. The boys got to stay home, because Mommy couldn't get out of bed (Tyler was also dealing with the after-effects of a migraine and Shawn was feeling poorly, so staying home was actually a good thing for them, but when I'm being honest they stayed home because I had to). Mommy couldn't move. Mommy absolutely, no-questions-asked, do-not-pass-go-do-not-collect-$200 had to rest. With the drugs doing their thing, my body told me it was out of order while the repairs were taking place. Because I had tried to force it without that rest, they had more work to do, and I had a harder time recovering.

As the day drew to a close, I returned to normal. The fatigue lessened, and I was able to get out of bed. We didn't make it to choir, but were able to get back into routine the next day. By the weekend, I was feeling great again.

I've rescheduled my next medicine, though. We may be off on a Monday the week of my February medicine, but I'm not taking any chances; I'll have my medicine on a Friday afternoon.

Hopefully, I've gotten all the reminder I need to rest 4 hours after and again 2 days after my miracle drug. If not, I'm open to being nagged/reminded in the future.

Have you ever had a time where you were strongly reminded of something the hard way?

Talk About the Weather

For some people, the weather makes good small talk. We've heard jokes and seen cartoons about talking about the weather at parties and gatherings. Like a farmer, though, my weather talk is often a complete conversation.

I have multiple sclerosis. When I visit the weather channel's site for Weather and Your Health and go to the Aches and Pains page, the health conditions section lists my disease. Weather can have a huge effect on my feelings of health and well-being, on my pain levels, and on my fatique. So to me, weather is not just small talk.

When it's too hot, I can easily get overheated. In fact, heat sensitivity is one of the most frequent symptoms of multiple sclerosis. Conversely, when it's too cold my body hurts. Much like those with arthritis or fibromyalgia, changes in the weather and the barometric pressure affect me, as does humidity. There are days I have to modify my activity, and I "blame it on the rain."

Fortunately, it's a pretty day today, and warmer than yesterday. It's late November, but it's nice to be outside enjoying Tyler on his Papa's new ATV. I'm enjoying the weather today.

Shall we talk about the weather?

My MS Life Moves Forward

For the last several years I’ve been focused on my “MS life.” The acronym “MS” seemed to be dominating my life.

• I have multiple sclerosis (MS). Living with and dealing with MS takes a great deal of time and energy, and my physical health has been a huge focus for our family, often to the exclusion of all else.
• I work with Microsoft (MS). I am a certified Microsoft Office User Specialist (MOUS). I have been a Microsoft trainer for almost a decade.
• I work in a middle school (ms). As a curriculum technology specialist, I focused on middle school topics and needs.

Some of my "MS life" seems to be moving forward now. I still have MS (multiple sclerosis). This is not a disease that can be cured. I also have to be pretty careful, because when other illnesses hit it’s a total knock out to my body (the strong disease-modifying drug I take by IV once a month is an immune-suppressant, so my body is not as resistant to other illnesses. Even my usual allergies are harder to deal with due to their affects on my body). HOWEVER, the medicine I take is a miracle drug for my body, and allows me to walk without a wheelchair or cane. I don’t even need quite as much rest as I once did, except during situations with other illnesses. SO…we will never be rid of the disease MS, but we are at a point where it does not dominate all aspects of our family life.

I still work with Microsoft, and prefer a Windows PC over Apple. Even though my first use of a computer was an Apple II, I’m deflinitely an MS girl. HOWEVER, hubby and I are addicted to our iPhones. I'm also working with MacBooks at work, including Final Cut Pro. What an exciting new challenge!

The biggest change regarding my MS life is an upcoming change in my work assignment. I’m excited to be moving to a new school location–a junior high! The change allows me to be at one school full-time (for the past 3 years I’ve split my schedule between a middle school and an elementary). It allows me to be very close to our house at the junior high my boys will attend in not too many more years (uggh–can't think about that right now…). It gives me some new and exciting challenges with multimedia (yes, including some Apple components). Plus, it still lets me focus a lot on training and professional development. The transition makes me nervous (I’ll be covering THREE schools for the next few months, while most on my team just have one!), but the change is exciting! SO…I’ll still be a part of “middle level,” since many states and districts consider middle school and junior high together, but for our district I’ll no longer be a middle school (ms) technology specialist, but will be moving forward to junior high (I’ve graduated–yay!).

As my MS life moves forward, I’m excited to re-focus my “new” time in my life and see where we go from here!

Happy February

February is one of my favorite months. Even thought it's usually pretty cold and where I live we're starting to be ready for warmer weather, February is still a great month. It's also probably the strangest months of the year. It has the least number of days, of course, so it gets stuck with the extra day that leap years thrust on us every four years.

It's a month of pink and white and red, of roses and of chocolate and other candy. It's a perfect month for a romantic. In my life, it even has three separate days for romance. Not only is Valentine's Day in February, but HoneyBear and I celebrate officially starting to date on February 12th and the anniversary of HoneyBear proposing to me on February 16th (the following year, in case you're wondering).

Unfortunately, my life has another anniversary of sorts marked each February--my diagnosis with multiple sclerosis. Just like the anniversary of our change from best friends to dating and the anniversary of our change from dating to engaged, this anniversary changed our lives dramatically.

My MS Life

I have multiple sclerosis. I have a chronic, incurable neurological disease in which my body attacks its own central nervous system. I was diagnosed in February, 2006. This is the story of my diagnosis.

February of 2006 followed a time of high levels of stress in our lives. I was in graduate school while working full time and also being mother to 2 small children, ages 5 and 2. HoneyBear had changed jobs in order to prepare to return to school himself, so finances were starting to become more strained. We had some other challenges that caused us to meet with a counselor. My job, particularly my relationship with my boss, had been a daily challenge, enough that I had recently quit and taken on a graduate assistantship--a good move career-wise, but certainly not financially. On top of all of that, HoneyBear had not too long before spent 8 days in the hospital, which I did not handle well emotionally. The multiple stresses finally caused my un-diagnosed neurological condition to go into overdrive.

I had already been having some problems, such as changes to my vision in my right eye (later determined to be optic neuritis, a common early symptom of multiple sclerosis). The summer before my diagnosis I had enough pain with the vision problems that I had visited a neurologist, who assumed it was migraines and tried treating me for that with no real improvement. The intensity of the problems abated, though, so I didn't pursue any further treatment.

One day in early February, with all of life's concerns weighing on me, I was planning to visit my ob-gyn due to some other problems I had been experiencing. Instead, I found myself in my doctor's office with complete numbness on the left side of my body, some difficulty talking and walking, and lots of fears. My doctor made arrangements for an emergency MRI under guidance from a neurologist, and I was also worked in to an appointment with the neurologist to read the results. Though the first thought was a stroke, that was a low probability because the muscles in my face still worked, they just felt numb to me.

When I arrived at my neurologist appointment, I was put through several physical tests--tests I have become accustomed to at each neurologist visit since my diagnosis. These tests confirmed changes to sensation in my left foot and changes to my reflexes on my left side, along with a significant foot drop on the left side when walking. Apparently, these were simply confirmation for the neurologist, who had seen my MRI scan already.

It turns out I was very blessed to have been connected to this neurologist, as he worked extensively with patients with multiple sclerosis. When we arranged for the MRI, he requested a specialized type of scan known as FLARE. This type of scan was apparently the best type of MRI for discovering the lesions associated with multiple sclerosis, but was not the standard scan used with MRI. When he showed us the results, there was little question--I had several places on my brain and a couple on my spinal cord indicative of my body attacking itself.

In diagnosing MS, however, several criteria had to be met. First, there had to be more than one location on the brain or spinal column of damage--literally multiple areas of sclerosis or scarring. There was also a time factor, in that there had to be multiple times of being affected by the disease. Though I had multiple lesions, since we could not absolutely state that I had experienced previous occurrences (though in looking back we knew absolutely of several times of illness that could be attributed to the disease), I was diagnosed as "probable MS," a scary and unsettling diagnosis. The disease itself was fearful to discover, but for the diagnosis to still not be definitive was difficult to handle.

Lots of corticosteroids got me through the initial attack, which lasted about two weeks, the "typical" length of time for a relapse. I soon started a disease-modifying drug and began the roller coaster of living with multiple sclerosis, including some eye scans and tests and an additional MRI, which gave enough evidence of activity that my diagnosis changed to "definite MS."

Now there are days that seem impossible. There are many more days, though, that are just days. Our family has been affected by this disease, but we have also learned to flow with it in many ways, trying to choose joy and continual hope. This is my MS life.

MS Napping

Apparently I’m not as “back to normal” as I’d hoped. I know I still have symptoms, but am considering them to be residual, and really do expect them to improve. I still have some numbness, but remember experiencing that for several months after the major attack I had when I was first diagnosed with MS. I have to use my cane for balance still, but I know I used that through the summer after that first attack, then didn’t have to use it the majority of the time. I also still have some difficulty controlling my hands, which again I remember continuing through the summer in 2006 as well—I even cut my hair short that time to make it easier to manage (though that backfired on me, because the shorter hair wound up needing more curling iron and brush action than the longer hair!)

Compared to a few weeks ago, I have improved so much it makes me feel back to normal. I was able to drive again and was able to return to work. I am even able to shower without the need for any help, thanks to a handheld shower and bench provided by my supportive family. Unfortunately, that means it’s very easy to overdo it.

Yesterday was an example of overdoing it. I spent the morning watching the matches on the last day of my almost-8-year-old’s soccer camp. It was overcast, and not as warm, for which I was quite thankful, but it still took energy. I got a haircut in the afternoon, and then had a date with HoneyBear in the evening, so I didn’t take much time to rest. The restaurant was a little warm to me, and I overheated toward the end of dinner. I hate the feeling it causes, a swamping sensation of fatigue that is immobilizing and makes it feel difficult to breathe. Getting back out to the car and blasting the air conditioning cooled me down, but by today it was time to get some rest.

For most, an afternoon or weekend nap is a luxury; for those with MS it’s a major part of managing the disease. With the boys spending the night at Grandma’s house, I was able to have the day to myself while hubby worked, and slept all morning. There’s something so special about my “MS nap”! I seem to sleep so much more deeply than during nighttime sleep. I do tend to wake up a bit groggy, but I tend to feel so much better overall, it’s wonderful! Maybe now I can really be back to my “new normal”!

Wing to Wing

I'm showing more improvement today--I am able to walk between wings of the building without needing the wheelchair! I did use the cane, but did not get shaky in the legs as I would have been even on Friday. Yesterday, in fact, I still was a bit shaky in the left leg when walking, so being able to walk further today without the shakes is big progress! Of course, my muscles haven't been required to walk much the last few weeks, and my thighs are reminding me of it! That's probably a good thing, though, because not only can I feel my thighs, but the soreness should help me continue to take it easy.

Bye Bye Prednisone

Yesterday was the last day of my steroids! As much as I dislike the side effects, I can't deny how important they have been in getting me through the worst of this attack. I returned to relative independence within two weeks of the attack, which happens to be the average when using steroids. I'm still dealing with extreme fatigue, a tight band around my rib cage, and lingering numbness and pain. As far as limiting daily life, though, the biggest challenge I still have is walking any distance and lifting my legs, such as getting into the shower. I do vaguely remember that aspect taking much longer to get past after my big attack in 2006, so I'm staying hopeful that it may not be a permanent impairment.

I'm down to only a week of Capaxone left, so I had to contact the doctor today to decide whether I should order more. The decision has been definitely made to switch to Tysabri infusion based upon the severity of this attack. I will finish the Capaxone I have on hand, then allow 2 weeks for it to work out of my system before taking the plunge. I'll be going in next week to start the paperwork for the Tysabri. I'm hopeful that this will be a good way to manage my disease.

On the Road Again

After almost three weeks, I can now drive again! Though I still have some "random" numbness in my feet (especially the toes) and legs, and still up to my rib cage, I have enough sensation that I am becoming accustomed to working through the slight numbness. It's a big relief to be able to drive and be more independent.

I also am able to navigate for longer on the cane, rather than being forced to use the chair. I am glad to have the wheelchair at my school to make navigating to different sides of the building easier, but had no problem going from car to office, even pulling my laptop bag. Which is very good, because I'm already sore from the manual wheel chair! It's difficult to make a grip with my hands. I'm getting good about opening doors and pulling myself through in the chair, but my arms and shoulders are not in great shape for it and are SORE! I definitely need to work on upper body strength.

I did go overboard a bit today, though. I visited the other school I'll be working at next year to meet with the principal and the another tech specialist, and used only the cane. Touring the middle school wing and seeing my office meant walking further than I've been doing. Between the heat and prednisone (and not being able to keep my feet up), my feet have been swelling dramatically in the evenings this week, and after the walking the further distance my feet didn't want to work very well. I also did not sleep well last night; when hubby got up in the middle of the night it woke me up enough to not be able to go back to sleep. So after my school visit (and a brief bank errand), it was time for a nap in the recliner with my poor swollen feet up. I just hope I can sleep tonight!

No More Weeble People

"Weebles wobble, but they don't fall down." This tagline for the Weeble People toys has fortunately been applicable to me the last few weeks--I'm wobbly, but haven't had any falls. The good news is that as of Wednesday my wobbles seem to be about gone! I was able to maneuver in the shower without bracing against the walls. I was able to walk down the hallway without grabbing for hand holds. Most importantly, the spinning and vertigo has decreased enough so I don't feel nauseous all the time, allowing me to walk in an almost straight line. I still don't know that I would pass a sobriety test, but I'm on my way!

About My MS Life

I am Laura. I am a Microsoft (MS) Certified Technology Specialist in a middle school (ms). I also have multiple sclerosis (MS), a disease affecting my nervous system. Welcome to my MS life.