Monday, December 30, 2002

Just when I think I have this fatigue stuff beat, it comes back to rear its quite-ugly head. I took my shot on Saturday, since Tim was out of town on Friday. Well, Sunday, I was a useless waste of space. Even though I slept well that night, I woke up and was tired, tired, tired. I sat around for the rest of the morning and the early part of the afternoon on the couch. Sometimes, I was too tired to even read. I decided to get up and pay some bills, but even that little bit of activity was enough to exhaust me - I needed to nap for a few hours to recover. I had a simple dinner recipe picked out, but I wasn't up to cooking, so Tim picked up some Bojangles for us. I was worried that all of that sleeping/resting would make it difficult to fall asleep at bedtime, but no problem there.

On the plus side, if I have to be too tired to get up, better that it happened on a day when there was loads of sports on TV. I lost my fantasy football Super Bowl, but I still enjoyed watching the Panthers win.

Today was OK. I felt tired, but nowhere near the mind-numbing fatigue of yesterday. I made it through a whole work day and am looking forward to watching Wake Forest play in a bowl game while I eat some lovely crock pot vegetable soup I made.

I'm just hoping I have enough energy to enjoy the New Year's Eve party we're going to tomorrow night. There's going to be fabulous food, and I have a gorgeous dress to wear. I'm a little sad, thinking that I'll be more subdued than I was last year, when I danced like crazy the whole night. But I'll be with good friends and my honey, so I know I'll have a wonderful time.

Friday, December 27, 2002

My legs hurt.

While I was in the shower this morning, my right leg started to tingle. I thought this might be a sign that my shower was too hot. After all, I had been warned that I'd probably experience some heat sensitivity, and that it would not be unusual if I had a brief flare-up of symptoms during/after a hot shower. But even though the tingling has subsided, my legs still hurt.

It's probably just inactivity, just like if I didn't have MS. After all, I haven't exercised regularly in a long while, so I should feel some stiffness and soreness. I'm just getting over a cold too, so I'm looking forward to getting more active.

Yeah, I had a cold. I was told that one of the bright sides of having MS was that I would have fewer colds and other similar illnesses, since my immune system is hyperactive. No fair, I want my money back. I'm still getting colds. One of the few perks of this disease, and I haven't really enjoyed that yet. I want my money back.

Thursday, December 26, 2002

I survived the holidays.

C'mon, I'm not the only one who feels this way. But this year, the holidays were definitely tinged with bittersweet.

Like when I sat in the congregation at church for the Christmas cantata. The last time the choir performed a cantata, I had been up there, bawling my eyes out...because it had been two days after we found out I had MS. I had a solo that day, and I was falling apart in front of everyone. I did pull it together in time to sing, but that was a difficult hour, as the emotional impact of my diagnosis hit me right between the eyes. That was only 9 months ago. Seems like such a short time - and yet, it seems like a lifetime ago.

We went on our first trip since my diagnosis, heading up to New York City with a few dozen college students. Oh sure, we had gone away for the weekend to celebrate our fifth anniversary in June. But that had just been lounging around in a resort and spa for a few days. This was traveling, complete with the airport pains and desire to sightsee and getting sick because I was hanging around other sick people and learning that my MS was going to change things no matter how much I wished it wouldn't. We didn't have to worry about traveling with my MS medication, since we were gone for less than a week and had carefully scheduled out my shots. But we did have to travel with the disease.

I was OK the first day (Monday), but the pace and lack of sleep caught up with me on Tuesday. We were at the Metropolitan Museum of Art, and I just knew that my body wasn't going to be able to handle a full day. Since we had tickets to the opera that night, and I had been told that particular opera was a long one, I was definitely concerned. And mad. I didn't have much time in NYC, and I didn't want to spend my afternoon lounging in front of a television. We had an early lunch, in hopes that the food and the rest would help rejuvenate me, but it wasn't enough. We ended up back in the hotel for an afternoon rest. Once we got to the opera, we had to head all the way up to the family circle (and those familiar with the Met know what I mean by ALL the way up), and I didn't realize how much that would take out of me. I sat on the aisle, disoriented and nauseous, wondering if I was going to be able to handle staying up there for the 3+ hours of the opera. Well, I was OK after a little while, but I have to confess - what saved me was a short nap during Act I. Yes, I went to the Met...and I slept. There, I said it. And I felt better, too!

I had fun, but it was a tough trip, and I blame my illness for that. Outside, it was very cold, but the buildings were nice and toasty. So I had to bundle up to go outside, but was way too hot once inside. Yeah, just what a heat-sensitive person needs. And when you're feeling worn out and unsteady, the last thing you want to be dealing with is large crowds of people bumping into you.

It was a sad realization that my MS is going to affect our vacation plans in the future. I used to enjoy getting up early, sightseeing until we were tired, taking a short nap, and then heading out for a nice dinner. But now, I have to get used to the fact that the sightseeing period is shorter and shorter, while the nap period is longer and longer. And it's so hard to plan a multi-day calendar of events when you're not sure how much energy you'll have left at the end of Day 1.

On the bright side, our next scheduled vacation is a long weekend at the Greenbrier, so I think I'll be able to enjoy that, MS or no. After all, it will have about the same pace as our anniversary weekend did, and that was a delightful and rejuvenating experience.

Friday, December 06, 2002

We're OK.

On Wednesday, central North Carolina received a terrible ice storm. It looks like we got 1/2-1 inch of ice before it ended yesterday afternoon. Anything over 1/4 inch can spell trouble for trees and power lines. Needless to say, Raleigh is a mess.

I left work as soon as the sleet started on Wednesday, around 1:45 pm. The roads were crowded, but I got home in about 45 minutes (about the same amount of time as it takes during rush hour). Tim waited until 3pm to leave Chapel Hill. He can usually get home in about 45 minutes too, since he doesn't go during rush hour, but it took him 3 hours to get out of Chapel Hill. He walked into our house around 8pm. That's how quickly conditions detereorated.

Our power went out just after midnight. By the time we woke up the next morning, the house was already down to 58 degrees. Since it stayed in the 20's all day, the house just kept getting colder and colder. We sat in front of the fire, and we could heat water since we have a gas stove. We found out that our friend's hot dog place was open, so we headed out there for lunch. We also picked up some hot dogs and coffee for my parents. While at their house, my sister called to say her power had been restored, so we all pulled stuff out of our fridges, packed overnight bags, and headed to her place. Her power went back out sometime after 4am, but it was restored around 9:30.

Over a million people in NC, about half of which are in this area, lost power in this storm. That's double the total from previous disasters like Hurricanes Fran and Hugo. I'm amazed how quickly they're getting power back to folks. Our local electric company thinks they'll have everyone restored by the end of the day today. Wow - those guys are thoroughly impressing me with their hard work and dedication.

My office was closed Thursday and Friday, but Tim had to go to work today. When he got to the house this morning, he called us to let us know that we had power back! I'm letting the house warm up before I head back over there.

Safe and sound...and grateful that none of us have significant house or car damage. There are a number of people in this area who weren't so lucky.

Tuesday, November 26, 2002

My back is doing better today. I went home last night and did my Stress Relief Yoga for Beginners tape. I stretched a little farther than the last time I did it, but I still laughed out loud a few times during the video. The instructor would place a yoga block down and say things like, "Place your head on the block as you stretch." Yeah, my dreams, maybe!

But the only way for it to get easier is for me to keep trying. If I don't stretch, I'll just get tighter. But if I keep trying, and keep working at it, I'll improve. I'll stop hurting as much. And I'll be able to do more.

Monday, November 25, 2002

Shot Night - My favorite shot location is the top of my legs (if you can have favorites for stuff like that). It's the easiest to access, so I'm less likely to hurt myself. And now that I know what I'm doing, I don't leave much of a mark.

This weekend - This weekend was a toughie. Saturday, I got tired during my grocery shopping, so I didn't get to finish my errands or go to a concert with Tim that night.

Here's how tired I was -- UVA beat Maryland by 5 touchdowns and NC State upset Florida State, and all I could do was sit on the couch and smile. Usually, watching football is an aerobic activity for me, because I'll be yelling, pumping my arms, and jumping out of the chair, so this is the true indication that I was a worn-out puppy that day.

Then I had trouble sleeping, since I had been resting/napping all afternoon and evening, which meant I wasn't in the best shape on Sunday. But there was a roomful of second-graders and their parents waiting to learn music from me at the start of Sunday School, so I had to be at church by 9:30 no matter what.

And oops, my days of long marathon shopping sessions at the mall are over! Actually, any sort of activity that requires me to be on my feet for a long time without a break is on the no-no list. I started fading as we were doing the return lap of the mall, and I wanted to keep going because I hate shopping after Thanksgiving. I was in such bad shape by the time we got done that we didn't even stop in the food court for a drink, because Tim thought we needed to get me back to the car. Given the back spasms I was having, I think it was the right call.

I kept having back spasms the rest of the night. If I stood for more than a couple of minutes, I would have more spasms. Tim heated up my herbal back pillow before I went to bed, and I felt lots better when I woke up.

Today - I'm doing better today. My upper back is stiff because of this weekend's trouble, but I'm moving around just fine. Some little twinges of discomfort, but no spasms. I have just got to learn that there are major consequences to me pushing my body farther than it can be handled. I just don't like to slow down.

Thursday, November 21, 2002

Flu shot - I got my flu shot yesterday. I was worried there would be some hassle, since one of the questions on the consent form is, "Do you have an active neurological disorder?" I doubt they get a whole lot of "Yes" answers to that one during these clinics at businesses. But when I explained to the nurse that I have MS and had talked to my neurologist, she just made a note on my consent form and stuck the needle in my arm.

Now that shot hurts. My arm still aches today, and it hurt to sleep on it last night. I told Tim that if I had had the flu shot before he gave me my last shot, he would have easily scored a '5' on the comfort scale, because the last shot he gave me hurt a lot less than this one. I know I'm comparing apples to oranges, but both of the needles went into my right arm.

Other stuff - Last night, I was cleaning, and I found a CD of David's Landers book Fall Down Laughing. Now, I would highly recommend this book to anyone who's newly diagnosed, or to the support people for an MS patient. It's the autobiography of the actor who played Squiggy on Laverne & Shirley. I read it right after my diagnosis, and laughed and cried as I read about his struggles to keep his MS a secret. He was so concerned about how his diagnosis would affect his ability to get work that he preferred that people mistakenly attributed his behavior to alcoholism. It was enlightening to read someone else's day-to-day struggles, but most importantly, I needed the reminder of how important it is to keep your sense of humor. Some of the personal stories of MS patients are depressing and can really be intimidating to a newly diagnosed person, while others can be quite helpful. This one falls into the latter category.

Saturday, November 16, 2002

Today is one of my rougher days, physically. When I woke up this morning, it was very hard to get out of bed because of the pain in my back. As I struggled to get to my feet, I thought, "This is what they mean in the booklet by 'transfer' issues."

I did my AM Yoga for Beginners tape, hoping it would make me feel better. Oh, it was torture at times. It was a struggle just to lay down on the yoga mat to start the practice. I had warned Tim in advance that he might hear some strange sounds as I moaned and groaned my way through the program. I did not disappoint. The noises ranged from the pleasant shock of doing the best cobra pose I've done in ages to the frustrated giggles as I tried to lasso my left foot with a yoga strap to the painful groans as I made my body move. It was a struggle, but I got through the entire program, and I definitely felt better for doing so.

I'm going to start an exercise journal so that I remember what I feel like when I exercise vs. how I feel when I don't. It can be a helpful thing to track as well for my neurology appointments, so that my doctor and I can figure out how much of my pain and movement trouble is due to MS and how much is just due to inactivity.

Did I mention that I've struggled today?

Shot Night - Last night was shot night again. Tim gave me the shot in my right arm. He's getting quite good at this - very little pain or blood. He's been teasing me, though, because I flinched during the shot. He also picked on me when I rated the shot in my journal.

I have a journal where I keep track of the shots - when I took them (date and time) and in what part of the body. There's also a place for notes about side effects, so I can remember things to tell my doctors. Each week also has a place to rate on a scale of 1-5 how comfortable I was with the shot. He got a 2 the first time he gave me a shot in my right arm, but he earned a 4 yesterday. He teased me about this, since I gave myself a 5 last week. He wants to know what it will take to get a 5 one week. (Not sure, but it may involve chocolate!)

Friday, November 15, 2002

I've been reading a booklet on MS & Fatigue that I got from the National MS Society. Part of the problem is figuring out what can be attributed to the MS, and what can be attributed to the fact that I haven't been exercising consistently for several months. For example, am I tired because I'm not exercising, or am I not exercising because I'm too tired? Is the stiffness in my muscles and back caused by my MS or my inconsistent exercise non-habits? Or is it a combination of both? I feel like it's one of those chicken-or-the-egg type riddles.

The booklet recommends stretching exercises for the stiffness and fatigue, whether it's caused by MS or not. I've got a nice collection of yoga videos (and, as I've mentioned before, high praise for Gaiam, the company that sells them). I'm trying to incorporate those videos in as often as possible. And on those days when I don't do a video, I'm trying to do some stretching while I watch TV.

So far this month I've tried two new videos. Stress Relief Yoga for Beginners was great. I was in a bad mood when I started, and I felt better mentally and physically once I was done. I did Gentle Yoga for Beginners for the first time last night. Whoa! It didn't feel so gentle while I was doing it. I could really feel the stretch. But afterwards, I felt terrific. If I had overdone it, I would be feeling sore today, but I don't - I feel good.

It was sad during both videos how stiff I was. I couldn't go very deeply into the poses at all, even with the assistance of props. But what did I expect? When I was exercising regularly, I was taking a yoga class once a week. Of course I could do more then! I just keep reminding myself how quickly I saw improvement that time. The instructor at my gym complimented me after the 4th or 5th week, telling me that he could tell a big difference in my poses. When I thought about it, he was right. I was reaching farther and able to go deeper into the pose.

I'm also looking at other things I can do to improve my energy level. I've been sleeping rather well, so I don't think I need to mess with my sleep habits much. Plus, I do a good job of heading up to bed early on nights when I'm tired.

I will work on my nutrition habits, so that I can get more energy from food instead of making energy-draining choices. I've got a couple of good books that I'm using as resources. I'm starting with baby steps, like making sure I take my vitamin every day, and trying to cut down on the junk while I add high-calcium foods. I made a list of steps in my journal last night that I can take. I'm focusing on the ones that only take a few minutes, like taking the vitamin, so that I can build up to the more imposing ones (or figure out ways to break those down into smaller, less imposing tasks).

Wednesday, November 13, 2002

I can't believe I forgot to report on this yesterday!

I had a follow-up appointment with my eye doctor on Monday. Nothing better to do on a rainy Monday than get burning drops in my eyes to dilate my pupils. Party. But the results were really good. There is a little damage to the nerve, and that's just not going to change. But my vision did improve some. It was a blurry 20/30 in May, but now the blurriness is gone. Can't complain.

Tuesday, November 12, 2002

I got an email from a friend, who offered to have his wife come over and give me my shots since she's trained and experienced. It was a gracious offer, but I declined. The shot isn't the bad part for me anymore. I mean, it's weird to have to go through the whole routine, but it doesn't hurt, and I don't mind giving me the shot. If anything, it's a bit of pride for me every week. After all, there are a lot of people who can't give themselves an injection, they just can't. I worried that I'd be one. But I can do it, and it's a positive reminder about overcoming fear.

The bad part is the uncertainty of the side effects. Fortunately, I've been having more good weeks than bad lately. This past week has been great, and I didn't have any of the bothersome side effects. Now I know that when I'm not feeling well when I take the shot, I'm going to feel the side effects more. Just knowing that is comforting. I'm the kind of person who likes to know what to expect and hates certainty. That's why this stupid illness can get to me every once in awhile.

Tim slipped up early in my illness and called it remitting-repulsive MS, instead of relapsing-remitting. I absolutely love that term, and I use it when I'm frustrated or in a bad mood. It cheers me up.

Monday, November 11, 2002

It's an icky, rainy day, and I'm feeling blah. I had horrible back spasms last night as I picked up Tim from the airport last night.

I've been trying some of the exercises we were told about in the Spirituality session at the MS conference, and they help. I've been working on a 2-phrase mantra to focus on while I breathe. When I inhale, I tell myself, "Breath is the spirit..." When I exhale, I tell myself, "...healing my soul." It helps, but I did wonder if I was going to hyperventilate on the way back from the cafeteria.

Another exercise is to help calm the frustration when I feel like criticizing part of my body, or feeling down when certain things don't work. The suggestion is to think of a body part that is working properly, focus attention on it, and thank it for what it does for the body. I thanked my sense of humor this morning for making me smile even during tough times. It helped a little.

Reacting to MS
It's interesting the sort of reactions I get when people find out I have MS. Some people look at me like I'm fragile, like they expect me to fall apart in front of them. Others seem incredulous that I'm walking, talking, laughing occasionally, just regularly functioning. Some are curious and ask questions, which I'm always willing to answer.

Some take the negative extreme, that my life is going to become so horrible and difficult. Others are in denial - I'm doing well now, I'll always do well, and besides, they're working on a cure, right? This is when it gets tough. On the one hand, people may write me off as hopeless, when in fact I'm still quite vital. But on the other hand, people can be blind to the real aspects of this illness.

For example, I do get the MS fatigue. I can't explain how it differs to someone who hasn't experienced it, but trust me, there is a distinct difference between the fatigue of not getting enough sleep and the fatigue brought on by this illness. Tim understands this, because he's seen how it hits me and can recognize some of the differences. But it gets so frustrating when I talk to other, well-meaning people, who say things like "Oh, you just need to go to bed earlier" or "Sometimes you just feel sluggish because you're inactive - you should get up and do something." They don't understand. And when I try to explain the differences, they don't listen. I don't think they really mean to dismiss me. I don't think they want to admit that this illness does have an impact on my life. They want to still think of me as well.

I wish it were that easy.

Trusting My Body
I was discussing how I felt to someone and told them how it could be related to my MS. Their reply? "You know, Amy, not everything is related to your MS."

I got mad.

Now, I'm not denying that there isn't some truth in that statement. I've had discussions with my neurologist where I've explained how I've felt, told him I wasn't sure whether or not it was MS, and had him smile and reply, "No, Amy, that's not MS." I know that there are some things that are completely unrelated, and others that are. I just don't know how to tell a whole lot of them apart yet.

And that's scary. You get used to how your body reacts to certain things. For example, Tim gets headaches when a storm front is coming through. I used to feel really comfortable saying what was "normal" for me, vs. what indicated that I was getting sick. Then I found out I had MS.

Suddenly, the playing field changed. When my foot falls asleep, is it just falling asleep, or am I having a psuedo-exacerbation because I've overdone it? Do I need to talk to the doctor about the tingling in my hand, or do I just need to let go of the computer mouse for the rest of the evening? And what about this back pain I've been having? Is that pain in my eye socket due to sinuses, or am I having another bout of optic neuritis? I don't know.

I'm starting to get a better idea, though. I know that if I overdo it in the heat, I'll get extremely tired, and my right lower leg will fall asleep. I also know that sitting somewhere cool and drinking ice water will bring me back around in 15-30 minutes. I know that if my eye socket hurts, but my vision stays the same and the pain goes away the next morning, it was just a sinus headache. I'm starting to learn how to tell what is and isn't MS. But it's still new to me, so I still have a lot to learn about myself.

And it's scary enough not being able to trust your own body, without having someone else remind you.

Sunday, November 10, 2002

Busy weekend to get caught up on...

Shot Night - Switched to a Friday shot night, since I've been having bad side effects and didn't want it to affect my work performance. Would be going it alone this week, since Tim is performing at Notre Dame. And it's the same leg where I did the first solo shot and bruised myself up so badly. This time, it went much, much better. The leg looks great, with no bruising. I didn't have a problem with side effects, either. I woke up twice during the night to take my Tylenol, but I wasn't dealing with fever or those nasty chills. Felt so great the next day that I didn't take Tylenol after 10:30am. Given my Saturday schedule, I was expecting to get worn out, but I did just fine.

MS Conference on Women - Went to a half-day conference on women sponsored by the National MS Society, and I had a wonderful time. The first presenter was a nurse practitioner, and she gave us a lot of useful information on women's issues. I loved getting all of the information on new studies. It's nice to hear about what efforts are being made to break new ground, as well as finding out that some of the things happening to me are perfectly normal. For example, my PMS has been worse over the past several months, because my energy levels just drop dramatically for a few days. She reported on a study where a large percentage of participants experienced psuedo-exacerbations 3-4 days before their periods. So what I've been calling PMS could actually be a psuedo-exacerbation. There's a medical reason I feel the way I feel. (That's always a relief to me!)

Then we had a breakout session on spirituality. The presenter asked why we chose that session, and I told her that I felt like my spirituality had been dented since getting my diagnosis. She's worked with a lot of chronically and seriously ill patients and their families. She discussed the grief process. When someone gets a chronic illness, they grieve the lost image of self and then have to move on to get connected to who they are now. Some people try to fight the grief, instead of allowing themselves to go through the natual process. She gave us some useful tips on getting reconnected with ourselves. I got emotional during her discussion and thought I was going to cry. My eyes were definitely moist. I've been so mad at my body for letting me down, for failing me when I was doing so many things so well, and I haven't moved on from that. I'm looking forward to using her tips to help me to progress. She talked about connecting with our souls, working on our relationships for ourselves, and I think that will be quite helpful for me.

We then had a lovely lunch and a presentation on Balancing It All. Our speaker has muscular dystrophy, and she shared some philosophy and practical tips for living your life in the best way possible. She told us about ways she's adapted so that she can still run a household, maintain friendships, and work.

I was worried I was going to have to leave the conference since I'm on call this weekend. I had traded weekends so that I could participate in the Pooch Parade. I did get paged twice, but luckily, they were at convenient times and I didn't have to go anywhere. My manager paged me right before the conference started to alert me of a problem that had occured earlier. Then the billing manager paged me during lunch (but before the presentation) to fill me in on some processes that she had set up to run. Perfect timing on both counts.

More fun - Once the conference was over, I headed over to a baby shower for a former coworker. I was nervous about how things would go. Would I get too tired? How would I face all of these people who probably don't know about my diagnosis? (I've only had a chance to share that information with a couple of them, and I knew one of them wouldn't be at that shower.) Well, I felt fine. I had more Tylenol with me in case I needed to keep medicating, but I didn't need it. And my health never came up during the shower. My former manager was there (who knew about my condition), but she arrived late and left early, so we didn't get a chance to talk. And it never came up with other people because the day wasn't about me, it was about the friend having the baby. Oh, and it was her birthday too, which meant two cakes (yum!). As I drove home, I realized that I had just had a "connecting with my soul" afternoon - hanging around with friends, celebrating a new life and a birthday.

Thursday, November 07, 2002

My knees and lower legs are hurting today. It's nothing overly painful, just achy. But the Aleve I took awhile ago has made no difference. I think I'll be pulling out one of those yoga tapes tonight. At the least, I'll do my stretching exercises while watching TV. There's loads of good stuff to watch tonight, so I'll have plenty of time to get some good stretching done.

Last night, I got a generous and unexpected donation for the MS Society sent to me, so I'll be adding that to my overall total.

I owe myself a treat. Spiegel was kind enough to send me a gift certificate for my fund-raising efforts from April's MS Walk, and I haven't bought anything yet. I'm trying to figure out whether to spend it on clothes, exercise equipment, or house stuff. Hee hee hee. I"ll be getting a gift certificate for the MS Pooch Parade as well, but this one is from a pet store, so the girls are going to be the beneficiaries of that! I think the certificate will be from PetSmart, since they donated squeaky toys, etc. to the event. I hope I'm right, because they have all of the girls' favorite treats and Matilda's food (Ellie is on a special veterinary diet).

I've heard that it's supposed to be back in the mid-70's this weekend. I'll have to tease Tim that the weather only gets nice when he's leaving town. The dogs and I will be heading out to Shelly Lake on Sunday. There's a two-mile walking trail there, and they really enjoy our trips out there. It will be a well-deserved fun-in-the-sun day for all three of us. Sure sounds better than sitting around at home watching the Panthers lose to the Saints.

Wednesday, November 06, 2002

I practiced yoga yesterday for the first time in a long time. With all of the back trouble, it's a habit I hope to develop more regularly.

A few months ago, I had bought a set of 3 Gaiam videos - Back Care Yoga for Beginners, Stress Relief Yoga for Beginners, and Gentle Yoga for Beginners. I had done the Back Care video, but hadn't tried the other two. Last night, I thought it would be nice to try the Gentle Yoga tape, but when I put it in the VCR, nothing happened. Turned out the tape was defective.

Boo. I had been stressed out before that, and now I was really stressing out. Solution? I did the Stress Relief tape. This one wasn't defective, and I enjoyed it. I was sad, though, when I realized just how inflexible I am. The instructor used a yoga block in a number of the poses so that beginners could rest their head even though they weren't flexible enough to sink too deeply into the poses. Well, in some of the poses, I still came nowhere near the block. I was ready to get upset about it when a voice inside said, "And you're surprised...why? Your back hurts, you haven't been exercising. You can't be surprised that you're not as flexible as you were when you took a weekly yoga class." Logic prevailed and gave me something to shoot for.

Oh, and I emailed Gaiam about the defective tape, since I really want to have a working copy of the Gentle Yoga tape. I love their videos - I own over a half dozen of the yoga tapes and one Pilates tape. Since the others in the set were OK and I had been using them, I didn't think I could go back to the store. I got an email this morning from someone at Gaiam who informed me that they would be happy to send me a replacement copy of the tape. Gotta love good customer service departments.

Tuesday, November 05, 2002

Oh my, I am overdue with this update!

MS Pooch Parade - What a wonderful success! Matilda, Eleanor, and I headed out to Chapel Hill on a sunny, crisp day. Not a cloud in the sky. The girls were hyper as I got ready, knowing that something was up. When I put them on the leashes and got them into the car, they were so exicted! They whimpered and cried all the way to Chapel Hill. The traffic cooperated, even though there was a game at Duke starting at noon and a game at UNC at 1:30.

When we got there, we checked in, and I got a second Pooch Parade leash so that I could ditch the retractable ones in the car. (They had only sent me one leash with my welcome packet.) We had some time to kill before the walk actually began, so we wandered around, trying to spend as much time in the sun as possible. Then it was time for dilemma to use the port-a-potty with 2 rambunctious dogs. Solution - stick them in the car while I took care of myself.

After awhile, the vendors were set up, so we wandered around. We got free samples of some treats, and had a Polaroid taken of the three of us. People were very helpful, calling the girls to get them to look at the camera, and the picture turned out great. Then it was time for shock #1. Matilda refused a treat! That little roly-poly has never met a treat she didn't like...until then. I was going to hold onto it and try again later, but Ellie grabbed it once she had finished hers.

Finally, it's time for the walk. There was a 1-mile and a 3-mile course. Originally, we signed up for the 3-mile, but I had my doubts. Ellie could handle it with no trouble, but I wasn't sure about Tilda and me. Usually, I had to work Tilda up to longer distances, and the bad weather and my health had kept me from getting her out for "training walks". Speaking of my health, I had been so exhausted the day before that I had to leave work early. Would I be up to it?

My stubborn nature took over, and I decided that I would not let the stupid disease win. We were walking 3 miles. Besides, from what I saw on the map, we could bypass the last mile if we wanted to. So off we went, amidst the big dogs. We were doing fine. Matilda needed extra time on the hills, and I had to take off my fleece jacket because I got too warm. The first checkpoint was right in front of Borders. It was great! There were nice girls offering water bowls and biscuits for the doggies. I only took the first two biscuits I was offered, but I could have easily stashed away a dozen more if I were greedy. After our snacks, we headed back to the course.

As we were approaching the second checkpoint, I realized that we were the last ones. So what? It wasn't a race. And it was a gorgeous sunny day. The second checkpoint was in the Blue Cross parking lot, not far from where we had parked that morning. I was half expecting Phil Keoghan, the host of The Amazing Race, to be standing there and saying, "Amy, Matilda, are the last team to arrive." I know, time to cut down on the reality TV shows.

At that point, the 3-mile trail converged with the 1-mile trail, so we could have continued on the trail or just headed back to the festivities. Since I wasn't in the mood to carry Matilda, I decided that we had done enough for one day. We headed over, and I grabbed the lunch that was so generously donated by Quizno's. Yes, I'll do product placements for organizations that supported this effort!

Time for dilemma to eat a sub, pretzels, and cake without dropping anything or letting the dogs attack it. Ellie wanted that cake! She sniffed at the sub a little bit, but she's definitely my dog, because she quickly homed in on the sweet stuff. I sat down in the wet grass and tried to distract them with dog biscuits. It worked for Tilda, but Ellie was still focused on the cake. Somehow I managed to eat most of the sub and cake without Ellie getting in the way, but I had to give up on the pretzels. I did drop one giant crumb of cake on the ground, but I left it there for Ellie to find. I knew she'd be pleased that she got away with something. Speaking of getting away with something, Matilda managed to grab the biscuit I was using to tempt Ellie, so she got a double treat. Still, on the scoreboard for the day, that brought the total to Ellie 2, Tilda 2, so it was all right.

After lunch, there was an agility demonstration by some flyball teams. Those were 4-dog relay teams that jumped over fences and retrieved a tennis ball from a board at one end of the route. I was fascinated. The girls didn't care one bit. They were too happy with the situation to notice anything else. It was a beautiful sunny day. Ellie was cuddled on my lap, and Matilda was curled up beside my leg. They didn't care what was going on in the world...they had it made where they were!

After the demonstration, there were some contests, but we didn't compete in those. I had been too tired to get costumes for them, and they didn't know any smart dog tricks (other then trying to steal my cake). I didn't look enough like either one of them to do well in the owner/dog lookalike contest - and we would have lost to the little girl in the dog suit anyway! So we headed back over to a vendor tent to get a dog pillow for the family room, and then we headed home. After I cleaned up, I put their pillow on the couch, and the three of us curled up to doze off while watching college football.

The grand total raised...$550!!!!!!!!! I was so thrilled. Thank you, thank you to everyone for all of your support - not just financial.

My health - Been having some back trouble, but other than that, I'm doing all right. The fatigue from last week has subsided, and I am better able to function now. For the time being, I'm going to move back to a Friday shot night, so that it won't interfere with work. It looks like I still need to adjust, and I want to make sure I have some recovery time.

I've been having some back trouble too, but I'm getting to work on that. I've got a booklet of stretches from the MS Society, and I've been doing those the past couple of days. I'm also starting to pick up the exercise. I've got some yoga, Pilates, and walking tapes which should come in handy. And at last week's Junior League auction I bought a Wellness Package from a local yoga/Pilates studio. Oh, and the package includes a massage!

Weekend plans - I'm signed up for a half-day conference for women with MS this weekend. Should be an interesting program. I'm on call this weekend, so hopefully there won't be any problems that make me leave the conference. I'm not complaining though...I was supposed to be on call last week and switched so that I could do the walk. I definitely made the better choice there.

Friday, November 01, 2002


I'm not handling this week's shot well at all. The shot itself went fine, even though Tim was nervous about sticking my arm again. But I woke up about 4am with nasty chills. Even though I was wearing a thick nightshirt, I ended up putting on my bathrobe and climbing back into bed. Then I woke up a couple of hours later drenched in sweat, battling a fever.

Now I'm just exhausted. I need to bathe the doggies tonight so that we're all ready for tomorrow's walk, then it will be time for bed for me.

Will post the final pledge total next week...the number should be terrific! Thanks to everyone!!!!

Thursday, October 31, 2002

Happy Halloween, everybody!

I have been exhausted the last few days. On Tuesday, I fell asleep during the season premiere of 24, even though I've been looking forward to it for weeks. And last night, I went to bed as soon as I got home from dinner with my supper club. I'm not normally one to hit the snooze alarm, but I've reset my alarm clock twice in the past four days so I could sleep just a little longer.

The dilemma...I've been invited to a Halloween party tonight that should be loads of fun. Well, it would be fun if I weren't so tired. And if I go to the party, I'll have to figure out how to handle my shot. Do I take Tylenol while at the party, then stay up an extra hour once I get home to give the medicine a chance to get to room temperature? Do we leave the party early? Do I reschedule my shot? Delaying my shot means taking it the night before the Pooch Parade, since I can only delay it for a day. Will I have trouble handling things on Saturday if I wait until tomorrow night to take my shot?

The other alternative would be to stay home from the party and try to get some much-needed rest. Easier said than done tonight, since there will be trick-or-treaters ringing my doorbell for hours. When I was growing up, my parents would never let me go to a house that didn't have the front porch light on - that was the signal. Have things changed? In prior years, we've left the outside lights off when we've had to go somewhere on Halloween, and we still had trick-or-treaters ringing our doorbell. One year, it happened while we were in the carport getting into our car.

I don't mean to be a party pooper. Normally, I'm a big fan of Halloween. I'll dress up in some silly costume and party with friends. If I'm home, I'll hand out candy to the neighborhood kids, then donate the rest through church to needy children. But this year, I just don't have the spirit (pardon the pun), because I'm just too tired.

Wednesday, October 30, 2002

Between work and Blogger maintenance, it's been awhile since I've been able to update this thing.

Last Shot Day - Went fine, although my side effects were worse than in the past. I was prepared for this, though, because I wasn't feeling well the day I took the shot. I've read that if your body is already trying to fight an infection, you're probably going to feel worse when you take the shot. I definitely did.

Pooch Parade - Woohoo, it's almost here! Right now, the weather report for this weekend is cold and dry. Trying to decide whether to take the dogs' sweaters along on Saturday. Matilda likes wearing hers, but Ellie just sulks and looks like a hairy candy cane in hers. I just hope they're right about no rain, because the girls hate rain and would fight me the entire time. Not to mention the fact that my car would smell like wet dog after the ride home.

Insurance Issues - I found out last week that my company is changing health insurance providers in January. Ack! The terror of wondering whether all of my doctors are in their network...and worse, whether they will cover my very expensive medicine. I went to their website and checked their provider directory, and every one of my doctors is in their network - no worries there. Yesterday, there was an open enrollment meeting at work. My heart sank when I saw that the medical plan did not cover self-injectable drugs. I wanted to confirm whether there was a pharmacy plan in place, so I asked the rep what the policy would be for self-injectables. She quickly assured me that they're covered. Someone pointed out the statement on the medical plan, and she explained that the pharmacy rider that was in place for my company would indeed cover self-injectables. Needless to say, I was smiling for the rest of that meeting.

My costs are going up, though, as I expected them to do. Under my current plan, I pay nothing. Well, I know I'll have to pay a co-pay this time, but was wondering whether my medicine fell in their preferred or non-preferred classifications. Yeah, it's a preferred, which means the lower ($20) copay. I can't complain about paying $240 a year for an $11,000 drug. And it was delightful to see all of the MS drugs listed on their drug list, instead of having to be treated like a special case.

Time for me to get on my soapbox. I keep hearing political ads addressing prescription issues for seniors. I don't want to belittle what older people are going through, but they're not the only individuals who struggle with the cost of medication. The MS drugs are all expensive - ballpark estimate $10,000 per year. They are not covered under some health insurance plans. Some people might argue that keeping expensive drugs like this out of insurance plans helps keep down healthcare costs for most taxpayers.

I'll disagree with that assertion. Those drugs are supposed to reduce the frequency of attacks. If people suffer fewer MS attacks, then they don't need to go to the doctor's office or hospital as often for treatment. Given how long an attack can last, the expenses for treating an MS patient can be quite high. And fewer attacks can mean less disability, or a longer time until a relapsing-remitting case goes progressive. That means that a person is functioning at a higher level, and could lead to fewer people having to go on disability because of the illness.

Here's the prognosis I'm facing right now: There is a 50% chance that my MS will become progressive within 15 years of my diagnosis. Within 25 years of diagnosis, those odds go up to 90%. Now, the progression may be mild enough that I can continuing working and functioning independently. Then again, maybe not. But since I was 34 when I was diagnosed, those statistics translate to a 50% chance by the time I'm 49, and a 90% chance by the time I'm 59. I wasn't planning on retiring at 49 (dreaming about maybe, but not planning), but I may not have a choice. In that case, I'll be getting disability payments...and guess who pays for those?

Saturday, October 19, 2002

Lots to report today.

The annual meeting was wonderful! It started with a workshop for the newly diagnosed. Dr. Freedman started with a presentation on managing the doctor/patient relationship, then continued with a discussion of general information on MS. Our next speaker was Holly Woodward, an MS advocate who has been living with MS since 1996.

After a break to check out the exhibits and get a delightful chair massage, it was lunchtime. After the meeting, we had a speaker. Jackie Waldman is an author who inspires others on volunteering. She also has MS. She told us about her experiences, and how giving back to others can fuel your soul. I got her to sign a copy of her book afterwards, and she's just a lovely person.

Then we had a presentation on alternative and complementary medicine by Dr. Allen Bowling. Wow - his presentation was loaded with great information.

He talked about the 5 steps to control MS:
1) Disease medications
2) Diet
3) Wellness approach
4) Exercise
5) Symptom management

I've got the first part covered, thanks to my Avonex. On the diet, he talked about a modified version of the Swank diet. It includes some sensible ideas, such as lowering saturated fat and increasing fish consumption to add healthy fats. I'm going to give it a try, along with the suggestions I got from the dietician on Thursday about adding vegetables to my diet.

On the wellness approach, this is an area where I'm trying to get more consistent. This blog is an example of my efforts to create an optimistic, empowered attitude. I'm also trying to commit more to exercise. Dr. Bolling presented some ideas to manage fatigue that I may give a try.

Once I got home from the meeting, I took the dogs out for "training". Who am I kidding? It was a perfect day, and I just wanted an excuse to be outside, so I walked the doggies.

Then I headed to the store, and I'm so proud that I stocked up on healthy foods instead of my typical junk food. One thing about the store really bothered me, though...the rudeness of a total stranger. While I was in the checkout line, the man noticed my UVA t-shirt and told me I was obviously handicapped. I was a) stunned that a total stranger would be so rude and b) saddened at the thought that someone would use the word handicapped as an insult. I was especially sensitive since I had been to the meeting that morning and seen a number of people who had to use canes and wheelchairs to get around. It disgusts me that there are people in this world who devalue people who need assistance to walk. It saddens me to encounter people that rude...and ignorant.

And to end on a happier note...why was I wearing my UVA t-shirt today?
UVA 37, UNC 27

Friday, October 18, 2002

The one bad thing about the first cold snap of the season: It's hard for me to figure out whether I'm having chills because of my shot last night, or because of the weather.

Tomorrow is the annual meeting for the local chapter of the National MS Society, and Tim and I will be attending. There will be a newly diagnosed seminar in the morning, and the keynote speaker is going to discuss alternative treatments. Should be interesting and informative.

Thursday, October 17, 2002

Lots of news to report today...

Got a call from my neurologist's office with the results of my bloodwork. Everything looked terrific. Woohoo!

Went to the MS Working Women's Luncheon today, and saw a presentation by a registered dietician. Some of you know I did Weight Watchers last year, and I lost a lot of weight. Unfortunately, I've gained it all back this year. I think there are a lot of emotional issues related to my illness. When I was diagnosed, I had just lost the weight and was exercising consistently, and I still got diagnosed with a serious illness. I don't know about you, but that sure was demotivating to me. I have been ticked off at my body since it got this stupid illness. I'm working through this now, so hopefully I'll be able to get back into more consistently healthy habits.

I also got my first e-pledges today!!!! I checked my email this morning and saw a notification about one. Right before I started this, I found out I had gotten another one. I was - and am still - so excited! I have now reached my minimum, but am still gladly accepting donations. I will be sending out receipts for tax purposes after the race, as well as an update on how it went.

Hard to believe it's shot night again...time flies.

Wednesday, October 16, 2002

Wow! I sent out my email letter about the MS Pooch Parade two days ago, and I've been getting terrific response so far. I'm so grateful for everyone's pledges and kind thoughts. I have a minimum that I must meet to participate, and it's a relief that I'm very close to it already. And I was reminded about corporate matching gifts as well, so I hope people will take advantage of that route if available. I also posted a message in the fundraising classifieds on my office Intranet.

Sigh. I'm not a fundraiser. I used to groan whenever an organization would try to get me to help them raise money. But this is personal. Yes, I'm selfish, since I have this disease. But I've also realized how many people who are affected by MS would love to be out there, walking to raise money, but they are physically unable. I owe it to them. I also owe it to my family to fight, to do whatever it takes to beat this stupid disease.

I'm just grateful that y'all make it so easy. Thanks.

Monday, October 14, 2002

Whoa, falling behind on my updates...

This week's shot was the easiest of all. It didn't hurt a bit! And it didn't bleed, either. I'm really getting the hang of this. My Avonex journal has a place to rate my shot comfort level on a scale of 1 to 5, and this is the first time I gave myself a 5 for the most comfortable. I hope it's the first of many.

Looks like I'm getting through the fatigue. I'm doing my shots regularly on Thursday evenings now, and it hasn't been difficult the next day at work. Well, I did get tired this Friday, but it was a dreary, rainy day. That would have made me tired even if I hadn't had a shot!

Found out today that my company will be changing its insurance provider for the upcoming year. I'm nervous about my medicine. Right now, I'm covered 100% - not even a copay. I think I might have to start paying a copay next year. At least, I hope that's all I'll have to pay. On the plus side, I've already confirmed that all of my doctors are in the new insurer's plan, so I don't have to switch doctors.

Tuesday, October 08, 2002

Long overdue update...

Went to the beach this weekend. I was nervous about how I would handle everything, since I had taken my shot on Thursday night. Would I feel too tired to join in on the fun? Would I have a fever/chills/other yucky side effects? NO. I played hard, went to bed late, ate whatever I wanted to, and was fine all weekend. Only hint of a symptom was numbness in my right leg Saturday night right before I went to bed (actually, I guess that counts as Sunday morning, ha ha ha).

Went for walks on the beach Saturday and Sunday. I did start to feel worn out during the walk on Saturday, so I told my fellow walkers that we either needed to head back, or they would need to pick me up on the way back. I was very tired when I sat down in my beach chair after the walk, but the fatigue quickly passed. Fortunately, the ocean was deliciously cool - but not too cool to go in - so I could easily bring my body temperature down despite the heat. Everyone just got used to me getting up and heading down to get my feet wet. It also helped that I took a break to make lunch on Saturday, so I was inside an air-conditioned beach house for about an hour in the middle of the day.

This weekend was a wonderful lesson for me. I can go have fun as long as I'm willing to listen to my body and take breaks as needed.

Friday, October 04, 2002

Excellent report from the neurologist today. He was quite pleased with both my progress and attitude. And when he told me my vision has improved! During my eye appointment in May, my left eye was a blurry 20/30. Today, it's a blurry 20/20! I was ready to do cartwheels.

Then they sent me off to get some bloodwork done. The Avonex nurse had warned me that I would need to have blood tests to make sure there wasn't any liver damage due to my medicine, so this wasn't a surprise. And I was so unimpressed with having to get another needle in my arm - yawn!

Tim did well last night on my shot. It was a little high on my arm, so it ached for a little while. The important thing is that he got it in the muscle. You can barely see the spot on my arm - no bruising at all this time. Meanwhile, I still have bruising from my last self-adminstered shot two weeks ago.

We're off to the beach for the weekend - that's why I took my shot on Thursday instead of Friday. It was just easier not to have to transport it, excuse myself from the gathered friends, and then figure out a way to dispose of the silly thing. I know that eventually I'll have to deal with the issues of taking my medicine while out of town, but I'm opting for later rather than sooner.

This is the first time I've taken the shot before a workday, and it's working out just fine. I was feeling so well this morning that I forgot to take my Tylenol on time - I took it 2 1/2 hours late! Definite improvement for me. When I first started taking Avonex, I could just feel when 4 hours had passed since my last dose of Tylenol. This time, I'm pushing myself harder than in the past and getting through it just fine.

I'll probably fall asleep early tonight. Who cares? I'll be on vacation.

Thursday, October 03, 2002

It's Shot Night. Part of me hates Shot Night.

Shot Night is my weekly reminder that I have MS. It's not the needle stick that bothers me, it's what it represents. When we pull that medicine out of the fridge to bring it to room temperature, I'm reminded that I have an incurable disease.

On a more positive note, I got my confirmation for the Working Woman's Luncheon sponsored by the local chapter of the National MS Society. This month's speaker is a nutritionist. I'm really looking forward to the presentation.

Wednesday, October 02, 2002

One thing that MS has made me do is examine my priorities. I've always had a hard time saying no, and I have a tendency to overload my schedule. Now that I have less energy, I'm more careful about how I expend it. I'm finding it easier to say no, and to cut out those things in my life that aren't worth the hassles.

For example, I've been dissatisfied with one organization for quite a while. Before my illness, I would just grin and bear it, figuring that I was getting enough out of the experience to make it worth continuing. But now, I realize that it's draining my energy, without a whole lot to show for it. As a matter of fact, the last three times I met with people from that group, someone had something unfriendly to say to me. So I decided "why bother?" and cut my ties. Some people won't understand, but the important thing is that I do what I know in my heart to be right.

Another thing I've been so careful about since my diagnosis is not to use my illness as an excuse. It would be so easy, so convenient, for me to not try to do something because I have an illness. But then, I'd miss out on an awful lot. I may be a few steps slower, and I may tire out quicker, but I can do anything I want to do.

I just hope noone else falls into that trap, of assuming that my saying no is because of the MS. Yeah, when I first was diagnosed, I turned down additional commitments while I evaluated the impact that this disease would have on my life. But if people think that I'm cutting back on activities because of my illness, they are sorely mistaken.

I'm just being pickier.

Sunday, September 29, 2002

Finally started feeling like myself again on Saturday! It seems so trivial to be able to say I could go grocery shopping and go to the mall, but those were huge steps for me. I felt good for the first time in days.

I had an interesting discussion with people at church today about a cure for MS. A few months ago, David Lander (who played Squiggy on Laverne & Shirley) spoke at an MS conference in Greensboro. He said that he doesn't look for a cure for his MS, since what could cure him what might not cure other people. After all, this disease hits people so differently. Anyway, he made me think about what I hoped would be accomplished during my lifetime in the battle against MS. My wish is that the percentage of people moving from relapsing-remitting to progressive would decline. Right now, the stats aren't pretty. There's a 50/50 chance of going progressive within 15 years of diagnosis, with the percentage jumping to 90% within 25 years. I was 34 when I was diagnosed. Add 15, and you get 49 - still young. So I've got a 50/50 shot of having progressive MS by the time I turn 50, and a 90% chance by my 60th birthday. That depresses me. I wish those numbers would improve.

Friday, September 27, 2002

Home from work for the second day in a row. Hopefully this will do the trick, and I'll get my energy back.

I'm learning that it's all right to be honest about being tired. I've tried to be polite and not burden people, but I'm giving up on that route. Last night, I went to choir practice, and someone gave me a hard time because we only show up when one of us has a solo. Well, a major reason why we've been missing rehearsals has been my adjustment to the medicine. A large percentage of the rehearsals I've missed have been directly related to my medicine. And Tim has been concerned about me and wanted to stay home and care for me those nights. I'm just glad the ignorant, insensitive comment was made to me instead of him. It's hard enough dealing with a spouse's illness without getting comments like that.

Well, last night I was exhausted, but I was there. I stayed in my seat during the entire rehearsal, even when the rest of the choir stood. And this time I actually told people how worn out I feel, instead of giving the imprecise, polite "I'm fine" comment.

I'll do what I can do, and if that's not good enough for other people, then that's their problem. I just wish they'd keep their ignorant comments to themselves.

Tim gave me my shot for the first time last night, and he did an awesome job. I've had painful shots in the arm before, so I was nervous about what to expect. I knew he'd try to be gentle, but he's inexperienced at administering shots...and I've had experienced people hurt me before in the arm. But Tim was great. My arm feels good, and there's no bruising.

Thursday, September 26, 2002

One of the scariest things about this stupid illness is wondering whether something you feel is "normal" or the start of an MS attack.

A couple of days I got very, very tired and starting having headaches. If it weren't for MS, I'd just be thinking, "Oh, I've just been pushing myself too hard. And with the recent weather changes, it's not a surprise that my sinuses are acting up."

Instead, here's what I'm thinking: "Is this MS fatigue? That pain in my left eye socket could be sinuses...or it could be optic neuritis. Oh great, I'll have to take half days for IVs again. And I'll still be taking meds when I head down to the beach next weekend." The imagination goes wild.

So today I'm home from work, trying to figure out if I'm having an exacerbation or just feeling run-down. The good news is that I don't think it's an exacerbation. At least, I know I'm not suffering from optic neuritis, because if I were, my eye would be feeling worse instead of better. Hopefully a day of rest and relaxation will help me get the spring back in my step.

Saturday, September 21, 2002

Well, last night was the first time I was alone for my shot. Things went fine. I do have a nice big bruise at the needle site. I still have to learn how to get the gauze pad unsealed and ready while holding the syringe. I bruised because I jiggled the syringe. The bruise doesn't hurt.

I've had fewer side effects this time, and I haven't had to be so faithful on the medicine. In other words, I can't tell time by my symptoms this time. Four hours can pass, and I'll still feel OK. I left the medicine out for an hour before the injection, and it looks like that does indeed cut down on the symptoms.

I got my information pack from the Pooch Parade today, and I'm looking forward to getting my fundraising efforts off and running. I never thought of myself as a fundraiser, and I always dreaded doing it in the past. I guess it helps to have a cause that really matters.

Thursday, September 19, 2002

Talked to my Avonex nurse Lorie (sp?) a couple of days ago. She's nice and seems quite knowledgeable about the medicine and what sort of things for me to expect. When I told her about my experiences with Aleve and Tylenol, she told me that she's heard that some medicines work better for some patients than for others. She also told me to leave my medicine out for an hour before shot time to let it get up to room temperature, instead of the 30 minutes mentioned in the book, to further help alleviate the side effects. She reassured me that the fatigue should get better, even though that seems to be the symptom that lingers the longest for a lot of folks. She's going to call me again in 4 weeks, and I'm looking forward to talking with her again.

I'm starting to get back into exercising. I've actually gone back to the gym twice this week. It had been too long away. Hopefully, getting back into a regular exercise routine will also help my energy level.

I've been picking on Tim. This was going to be his first week administering the shot...but guess who's going to be out of town on Friday night? Awfully convenient that he has a professional association meeting on the very weekend that he's supposed to stick a needle into my arm. Oh well, I'll just rotate back to the front of my right thigh, since it's just lil' ole me.

Sunday, September 15, 2002

Well, this weekend didn't go as smoothly as the two previous. I was supposed to take the shot in the side of my leg today, and I didn't get it far enough to the side. I bled a little more, but it was still OK.

I decided to try Aleve this time instead of Tylenol. I didn't get any chills, and I did sleep through the night, but I ached horribly when I woke up. I felt bleah, much worse than the previous two times. Once I started taking Tylenol again, the muscle pain went away, and I felt more like myself. I felt so drained when Tim and I went to the grocery store. I tried to take it easy for the rest of the day.

I had more energy today. It's almost dinner time, and I am getting tired now, but I was able to run errands with Tim with no trouble.

I've got a software upgrade next weekend, so resting on Sunday will not be an option. I'll have to be at work at 9am Sunday. So next Saturday is pamper day, and I will make myself take it easy so that I can have the needed energy for work. Now let's just hope that the pager doesn't go off during the week, since I'm on call starting tomorrow!

Friday, September 13, 2002

Today is Shot Day, and the most commonly asked question is "So, where do you take the shot?"

People give me the strangest looks when I tell them I do the Macarena. It's the best answer, though. I start with the front of the thighs, then the sides. The next sites are my upper arms, then my backside. If you're following along at home, you've now walked through the 8 sites where I can get my shots. I administer the ones in the legs, and Tim will handle the arms and backside.

Wait, that doesn't sound quite right...

Wednesday, September 11, 2002

I've gotten some materials from the Avonex Alliance over the past couple of days. It's a service provided by the drug company to give additional needle supplies and information. I sat down and read through the materials last night, and I learned that my worn-out feeling has a name, asthenia. More than 20% of the people who use Avonex experience such weakness.

Today is a day of reflection for so many people. A year ago, I was so naive. I knew about the concept of evil, but I had never seen the world touched by it. On a personal level, I also had MS, but I didn't know it yet. Now, I can say I know more about evil and MS than I ever thought I would. Talk about a loss of innocence.

Monday, September 09, 2002

Training Day

Today was a perfect day, weather-wise, so the dogs and I started our training for the Pooch Parade. We did one mile this afternoon, and we were all tired at the end. We need to get back in shape!

Saturday, September 07, 2002

Yesterday was my third shot day, and I am one tired puppy today. I got some chores done, but then felt completely wiped out afterwards. I sat down to relax and watch the US Open...but that of course resulted in a nap.

I had more side effects this time. I slept well past the time I was supposed to take Tylenol, so when I did wake up, I had to deal with chills and muscle aches. Tim suggested I try Aleve next week, since that's supposed to last 12 hours. It's worth a try. I don't want to set my alarm for every dose, but I also don't want to feel sick when I wake up!

Got the brochure for my local National MS Society's annual meeting. I'm pleased to see there's one workshop specifically targeted at those of us who are newly diagnosed. Tim and I will be there.

Sunday, September 01, 2002

Friday was my second shot day. I thought it was going to be weird, since it was at home without a nurse there to guide me through it. We got through it just fine. I just set everything up, followed the step-by-step instructions in the book, and did it.

I used one of my Winnie the Pooh bandaids, but I hardly needed it. It felt sore for a few minutes, but not bad at all. Compared to donating blood, getting an IV, or getting pinched by my older brother or sister, this is a piece of cake!

I took this shot at night so that I could sleep through side effects. I was worried there might be more, since I wouldn't be taking my Tylenol faithfully throughout the night. I was not going to set my alarm to go off every 4 hours just so I could take some medicine. Anyway, the side effects were mild. I briefly had chills at one point that morning. My temperature never got above 98.8 degrees. I did get some muscle aches when I was late taking Tylenol during the afternoon, but they went away quickly and weren't so bad.

I had hoped it would be like this - no big deal, once I got over the concept of giving myself shots. It's scary to think about, especially when you hear other people's horror stories. But now that I know what it's going to be like for me, no worries!

Tuesday, August 27, 2002

The energy level is much higher now. Don't know whether to attribute that to the food, or just the passage of time since I had the shot. Whatever the reason, I feel a lot more like myself least, as much as possible, given the rain falling outside.

Monday, August 26, 2002

Oh, cool! I sent out the link to this site yesterday, and I've already gotten emails!

I have been absolutely wiped out since last evening. Yes, I went to the pool yesterday, but I either stayed in the cool water or stayed in the shade the whole time, so I definitely did not get overheated. I still felt fatigued this morning, even after a solid night's sleep. I did read that weakness and anemia are side effects of Avonex, so I've been trying to pay extra-special attention to my eating habits today. That roast beef sandwich tasted very good at lunch - gotta get my iron. Hopefully this fatigue will subside soon.

Saturday, August 24, 2002

Shot training is over, and I've gotten through my first shot. It wasn't nearly as awful as I expected it to be. My hand shook during the shot, but I didn't hurt myself. That turned out to be a blessing in disguise. Tim is so worried that he's going to hurt me, but knowing that I didn't hurt myself with such a shaky hand should reassure him. Having Tim and Sue along insured that the situation could not be taken very seriously...and in this case, that was a very good thing.

I was warned about the side effects. It would not be unusual to have a fever of 101 for most of the day, or violent shaking chills. Nausea was also a possibility. When all was said and done, my fever never went higher than 99, and I was more tired than usual, but that's all. I'm one of the lucky ones. I still plan to take my Tylenol or Advil faithfully on shot day, though...better safe than sorry. I've heard that the early shots have the worst side effects and that you get used to it over time. Needless to say, I'm relieved that all went so well for the first.

One of my cyberfriends sent me a pack of Winnie the Pooh bandaids. Funny, I had bought the exact ones for myself earlier in the day. Lisa knows me so well.

So it's two days later, and I feel fine. I can still find the spot on my leg where I gave myself the shot, but it just looks like a freckle.

I can do this. The concept of injecting myself with medicine once a week was freaky, but now that I've done it once, I know I can do it.

Tuesday, August 20, 2002

The doggies provide an appropriate background, since I signed up today to participate in the MS Pooch Parade on Saturday, November 2nd. I will be walking 3 miles with my Yorkshire Terriers, Matilda & Eleanor, to raise money for MS. To donate, just click on the link at the side of this page. If you fill in my last name (Sparks) and state (NC), you'll be able to find the link for me and the Pooch Parade.

3 miles should be interesting - I'll have to get the girls in shape by then. Tilda is 11 and Ellie is 10, but they're doing well for their ages. I know Ellie can do 3 miles with no trouble, but Tilda tends to spaz out at the beginning and tires at the end. We'll just have to do lots of practicing between now and then, once the heat dies down a bit. Given how hyper they get when they see their leashes, I'm sure they'll enjoy the training!

As I get this blog in better order, I'll attach links to make it easier to access informative sites. Right now, I've got the donation link at the National MS Society site. I've also got a link to MS Active Source, an information center provided by the company that makes my medicine.

Monday, August 19, 2002

The training appointment is scheduled for Thursday. I'll have family with me so that they can learn how to administer the shots too. I've got the day off from work, in case I'm bothered by side effects. Sounds like everything is a go!

Friday, August 16, 2002

Today's Update: The medicine is finally here!!!! Just because a process that I was told would take "3-5 business days" took nearly 2 months to complete. Warning to any MS patients out there - just because the literature says they'll call back doesn't mean they will. I got six different stories during my last six phone calls, and then they lied to my neurologist about not being able to get in touch with me. But the Avonex is safely in my refrigerator, where it will stay until time for my shot training. Waiting to hear back from my doctor's office on when that will take place.

Friday, August 02, 2002

The story so far...

My saga started on a Saturday in late February, when I had a dizzy spell in the grocery store and saw this big explosion of light in front of my face. Once I got my balance, I went on my merry way. The next morning, I realized that my left eye was blurry. Quite blurry. I've been quite proud of my 20/20 vision, so this was a noticeable inconvenience, especially when it started to hurt. Over the course of the next few days, the vision in my left eye kept fading more and more, as I started my Local Tour of Doctor's Offices. My primary care physician sent me to the opthalmologist, who diagnosed optic neuritis and scheduled an appointment with a neurologist.

When I hit the Internet, I learned that quite a large percentage of people who have optic neuritis - more than 50% - either have multiple sclerosis or will be diagnosed with it within 5 years. What the hell? Me? A relatively healthy 34-year-old has MS? I panicked. Then, over the course of the next few weeks, I read anything and everything I could about MS.

I also took lots of tests. Blood tests, visual evoked potentials tests...and the dreaded MRI. I tried to be a big girl and get through it without drugs (bad move) and ended up freaking in the MRI tube on the first try. The second try was successful, thanks to Xanax and Valium. So much for being brave. I had to be in that @*(%@#^% tube for almost 40 minutes, so that they could take pictures of my brain with and without dye injected. As I left, I pointed to the screen and said, "This is your brain. This is your brain on dye. Any questions?"

The questions were answered the next day. Caesar was right, beware the ides of March. Because on March 15, 2002, I learned that I had MS.

I also learned that I wasn't going to die from this illness. It could shorten my life span by a couple of years, but it probably wouldn't kill me. After hearing of my post-MRI meal of chili dogs and baklava, my neurologist had plenty of ideas on what would kill me before MS played a part.

I also learned that the stereotypical image of an MS patient as someone debilitated and in a wheelchair is not the more common picture of MS. Yes, 25% percent of people with MS may need to use a wheelchair, but that still means the vast majority do not. As I've been meeting more and more people with MS, I've been learning that there are a number of people managing this chronic illness. They have MS, but it's just something that needs to be managed. It doesn't control their lives.

So where am I now?

I'm dealing with the joys of insurance companies, doctor's offices, and drug companies, trying to get started on one of the wonderful medicines available to people with relapsing-remitting MS. Hopefully, I'll be reporting soon on my first experiences with Avonex.

I've learned first-hand that heat can temporarily bring on symptoms. Twice I've experienced numbness in my right leg when I've gotten too hot, and I've gotten fatigued a few more times than that. The symptoms go away quickly enough, once I've gotten myself into a cool environment and rested for a little while.

I'm also still working full-time and keeping up a very busy life. I refuse to let this illness become who I am. Yes, it's a part of me, but just a part. There's a whole lot more that I have to offer than that.