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, right...in 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 #1...how 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, Ellie...you 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 #2...how 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!!!!