Time to register another first - my first business trip since my diagnosis.
I couldn't go just anywhere. I had to go to New England...in the dead of winter...during a cold snap. What a rude awakening to hear "It's zero degrees outside" when my alarm went off this morning. I was a bit nervous about this trip. I'm completely on my own. Granted, I did this all the time when I was consulting. But then, I didn't know about the MS. It's different when you throw an illness into the loop.
And how's it going? Fine. I'm staying in a delightful inn in Westborough, MA where I feel pampered. The room is huge and toasty, with a couch and plenty of room for my yoga mat. And there's a full kitchen downstairs, so I don't have to go out at night in the ghastly cold. Funny, when I'm home, I love to go out to eat, but in this weather, I much prefer hanging out at the inn, munching on a rotisserie chicken. The only nerve-wracking part was trying to find the inn that first night. Note to self: Print out the freakin' directions from the Internet before going on any trip. I made fun of the van driver who couldn't get a college group to LaGuardia Airport, but yet I neglected to get my own directions this trip.
I have made some concessions for my illness, but nothing too drastic. I prepaid for gas for the rental car. That way, I don't have to worry about finding a gas station in downtown Boston by myself after dark in below-zero windchills when I'm in a hurry. It's worth not having to deal with that stress. And I bought a bunch of water bottles at the grocery store yesterday, so that I can keep myself properly hydrated. Then there's my shot - I moved that out to Saturdays, just in case I have a problem getting home from this trip. Since they're calling for snow in NC tonight and tomorrow, I'm glad I've taken that precaution. I also left room in my carry-on bag for an extra change of clothes and my toothbrush, in case I get to call Logan Airport my home-away-from-home tomorrow night.
Wednesday, January 22, 2003
Thursday, January 16, 2003
It's snowing. Not as much as I would like, but it is snowing. I feel like a 7-year-old, hoping enough snow falls that school will be cancelled. I have a feeling I'm going to be disappointed.
Pilates
I've been having a lot of fun with my Pilates classes. I went to my second mat class this week. I have a lot of work to do, but I plan to practice a lot while I'm on my business trip next week.
Last night, I had a private equipment session. Pilates equipment looks like a cross between a torture chamber and a bed designed by Tim Burton. Between the challenge of the springs' resistance and the helpful trainer offering assisted stretching, I got a major workout. When I was in some of the positions, I thought, "Didn't they consider this torture during the medieval times?" But it felt wonderful. I've got two more sessions on my package, and then I have to figure out a way to be able to afford some more.
Pilates
I've been having a lot of fun with my Pilates classes. I went to my second mat class this week. I have a lot of work to do, but I plan to practice a lot while I'm on my business trip next week.
Last night, I had a private equipment session. Pilates equipment looks like a cross between a torture chamber and a bed designed by Tim Burton. Between the challenge of the springs' resistance and the helpful trainer offering assisted stretching, I got a major workout. When I was in some of the positions, I thought, "Didn't they consider this torture during the medieval times?" But it felt wonderful. I've got two more sessions on my package, and then I have to figure out a way to be able to afford some more.
Tuesday, January 14, 2003
Exercise
They used to tell people with MS to take it easy. Exercise? Oh no, that just stresses the body...and you're dealing with enough stress, you poor thing.
Well, no more. Evidence is showing that exercise is quite good for people with MS. It's a way to reduce stress and fatigue, as well as improve strength and flexibility. I was exercising quite regularly before I knew I had MS, but then I joined the Slacker Club. I was just too ticked off at my body to make time for exercise, since, after all, I had been exercising and got sick anyway.
I'm getting back into the routine. During a Junior League silent auction, I picked up a Pilates package which includes some classes, some private equipment sessions, and a massage. I went to the first class last week, and I'm going to sign up for the whole 10-week beginning session. I think it will do me some good, especially helping to strengthen my back. My first private equipment session is tomorrow. And I haven't forgotten about the massage - I never would! - I'm just saving that.
I work in a different building now (same company, they just moved my group), and am literally down the hall from a workout room. So I have no excuse. I went yesterday after work and had a grueling session on the elliptical trainer. The problem is, it was too grueling, and now I'm run down. I forgot the cardinal rule for people with MS and for people resuming an exercise program after a long layoff:
Don't push too hard too fast.
I overdid it, and I'm paying for it. Sometimes when I push too hard, my right leg goes numb below the knee. Other times, I just get tired. No numbness this time, but I was one majorly tired puppy afterwards (and still am). On the plus side, I slept beautifully last night.
MS Events
This is a busy week on my MS Society chapter's schedule. On Thursday, there's the Working Women's luncheon and the monthly meeting of the self-help group. On Saturday, there's a conference for newly diagnosed from 9am to 3pm.
I'm going to lunch, but that's it. I've been to so many events over the past several months that I really feel like I'm pretty up-to-date on the news, research, information, etc. And I don't think it hurts for me to put a little distance every once in awhile. I don't want to bog my thoughts down so much into focusing on MS that I forget about the other things in my life.
This week is certainly a busy one, even without those events. I had a board meeting last night, Pilates class tonight, Junior League meeting tonight, and a Pilates exercise session tomorrow. Amidst all of this, I also have to get ready for my business trip next week. That trip is a big reason I'm staying home on Saturday. I'll need the time to do laundry, pack, and basically get things done so I don't feel overwhelmed before I get on the plane. And now the weathermen are saying we might get some winter weather on Friday. Hello???? What part of already busy is so hard to understand here?
Insurance Issues
Well, my company changed medical insurance providers, effective 1/1/03. Given the headaches I had getting my medicine and coverage straightened out in the first place, I was understandably nervous about this. I was reassured, though, when I saw all of my doctors listed as part of their network, and when I saw Avonex and the other MS drugs listed on their Preferred drug list for prescriptions. This meant that I'd get the lower copay and shouldn't have to worry about getting my medicine. I notified the delivery service that my insurance was changing, and left it at that.
Until I got the phone call that it wouldn't be that easy.
Apparently, I needed to use a new delivery service to get my medicine - my insurance doesn't work with my current carrier. I panicked. Oh great, I'm going to get put through more hoops, and have to deal with the nightmares of bureaucracy again. How many times would I get hung up during this round of phone calls.
Relax. It turned out to be much easier than that. I called, and they were willing to arrange my next delivery date on the spot. Just like before, I'll have it waiting in my carport when I get home on the designated day. The only thing they needed that I couldn't give them right away was a prescription, and they gave me the contact numbers so my doctor's office could phone or fax the prescription directly to them.
So I had one hoop to jump through - but it was a small one, so that's OK.
They used to tell people with MS to take it easy. Exercise? Oh no, that just stresses the body...and you're dealing with enough stress, you poor thing.
Well, no more. Evidence is showing that exercise is quite good for people with MS. It's a way to reduce stress and fatigue, as well as improve strength and flexibility. I was exercising quite regularly before I knew I had MS, but then I joined the Slacker Club. I was just too ticked off at my body to make time for exercise, since, after all, I had been exercising and got sick anyway.
I'm getting back into the routine. During a Junior League silent auction, I picked up a Pilates package which includes some classes, some private equipment sessions, and a massage. I went to the first class last week, and I'm going to sign up for the whole 10-week beginning session. I think it will do me some good, especially helping to strengthen my back. My first private equipment session is tomorrow. And I haven't forgotten about the massage - I never would! - I'm just saving that.
I work in a different building now (same company, they just moved my group), and am literally down the hall from a workout room. So I have no excuse. I went yesterday after work and had a grueling session on the elliptical trainer. The problem is, it was too grueling, and now I'm run down. I forgot the cardinal rule for people with MS and for people resuming an exercise program after a long layoff:
I overdid it, and I'm paying for it. Sometimes when I push too hard, my right leg goes numb below the knee. Other times, I just get tired. No numbness this time, but I was one majorly tired puppy afterwards (and still am). On the plus side, I slept beautifully last night.
MS Events
This is a busy week on my MS Society chapter's schedule. On Thursday, there's the Working Women's luncheon and the monthly meeting of the self-help group. On Saturday, there's a conference for newly diagnosed from 9am to 3pm.
I'm going to lunch, but that's it. I've been to so many events over the past several months that I really feel like I'm pretty up-to-date on the news, research, information, etc. And I don't think it hurts for me to put a little distance every once in awhile. I don't want to bog my thoughts down so much into focusing on MS that I forget about the other things in my life.
This week is certainly a busy one, even without those events. I had a board meeting last night, Pilates class tonight, Junior League meeting tonight, and a Pilates exercise session tomorrow. Amidst all of this, I also have to get ready for my business trip next week. That trip is a big reason I'm staying home on Saturday. I'll need the time to do laundry, pack, and basically get things done so I don't feel overwhelmed before I get on the plane. And now the weathermen are saying we might get some winter weather on Friday. Hello???? What part of already busy is so hard to understand here?
Insurance Issues
Well, my company changed medical insurance providers, effective 1/1/03. Given the headaches I had getting my medicine and coverage straightened out in the first place, I was understandably nervous about this. I was reassured, though, when I saw all of my doctors listed as part of their network, and when I saw Avonex and the other MS drugs listed on their Preferred drug list for prescriptions. This meant that I'd get the lower copay and shouldn't have to worry about getting my medicine. I notified the delivery service that my insurance was changing, and left it at that.
Until I got the phone call that it wouldn't be that easy.
Apparently, I needed to use a new delivery service to get my medicine - my insurance doesn't work with my current carrier. I panicked. Oh great, I'm going to get put through more hoops, and have to deal with the nightmares of bureaucracy again. How many times would I get hung up during this round of phone calls.
Relax. It turned out to be much easier than that. I called, and they were willing to arrange my next delivery date on the spot. Just like before, I'll have it waiting in my carport when I get home on the designated day. The only thing they needed that I couldn't give them right away was a prescription, and they gave me the contact numbers so my doctor's office could phone or fax the prescription directly to them.
So I had one hoop to jump through - but it was a small one, so that's OK.
Thursday, January 02, 2003
Resolutions
Like many folks, I made resolutions focused on improving my health during 2003. Had an interesting start to attempting to complete them, though.
I had gotten a talking pedometer at the MS Walk, but I had never taken the thing out of the box. Well, like a good resolution maker, I took it out yesterday and programmed it. I programmed in my step length and set the clock.
But...at 6am, I realized I should have turned off the alarm. It was weird waking to a mechanical voice saying, "The time is 6am. Your alarm was set for 6am." Luckily, I had planned to get up at 6am anyway.
So I'm getting ready, and I drive to work. As I turn the corner to my office, I notice the pedometer is no longer hooked to my waist. Dang it, I lost the thing already. Nope, it had just slipped off and was beside me on the seat. But as I'm walking into the office building...plop. It falls in the parking lot. Let's just say, it won't be doing any more talking.
I do have another talking pedometer that I got in a goodie bag. Let's see if this one can survive for more than 2 hours. If not, then I'll have to return to the mute version.
New Year's Eve Celebration
Well, it was the same...but different. Yes, I went out and partied. I danced like a crazy fool. I drank champagne and martinis and ate lump crabmeat. I stayed up until the wee small hours of 2003. And I had loads of fun.
It was a little different than last year, though. I started having back spasms early in the evening, but I danced through the pain. I refused to let this stupid disease mess up the party. And yeah, I got tired, but my friends were understanding when I said I had to take a break from dancing.
At 11pm, there was a Caribbean party, to celebrate New Year's in Barbados. This included fireworks on the veranda. It was too foggy to see much, but the temperature was absolutely delightful. I took a number of dance breaks out on that veranda during the evening - perfect way to avoid overheating.
I knew I would pay for it the next day, but I didn't have the traditional reveler's hangover. No, I was just very tired and had to take it easy all day.
MS News
Opened up my newspaper this morning to find out about some promising results published in the New England Journal of Medicine for a drug called Antegren. I had heard of it before from my neurologist. Since I am still of child-bearing age and have not committed to not getting pregnant, we decided I shouldn't start taking it - put as little medicine in my body as possible for the time being. Of course, the big news for my local paper was that it could be manufactured right here in the good ol' Research Triangle Park.
For more information, check out:
Test drug may mean new treatment for MS, Crohn's
Blog News
I'm probably going to play with a new template over the next few days, since it's been months since the Pooch Parade. Stay tuned for a new look for a new year.
Like many folks, I made resolutions focused on improving my health during 2003. Had an interesting start to attempting to complete them, though.
I had gotten a talking pedometer at the MS Walk, but I had never taken the thing out of the box. Well, like a good resolution maker, I took it out yesterday and programmed it. I programmed in my step length and set the clock.
But...at 6am, I realized I should have turned off the alarm. It was weird waking to a mechanical voice saying, "The time is 6am. Your alarm was set for 6am." Luckily, I had planned to get up at 6am anyway.
So I'm getting ready, and I drive to work. As I turn the corner to my office, I notice the pedometer is no longer hooked to my waist. Dang it, I lost the thing already. Nope, it had just slipped off and was beside me on the seat. But as I'm walking into the office building...plop. It falls in the parking lot. Let's just say, it won't be doing any more talking.
I do have another talking pedometer that I got in a goodie bag. Let's see if this one can survive for more than 2 hours. If not, then I'll have to return to the mute version.
New Year's Eve Celebration
Well, it was the same...but different. Yes, I went out and partied. I danced like a crazy fool. I drank champagne and martinis and ate lump crabmeat. I stayed up until the wee small hours of 2003. And I had loads of fun.
It was a little different than last year, though. I started having back spasms early in the evening, but I danced through the pain. I refused to let this stupid disease mess up the party. And yeah, I got tired, but my friends were understanding when I said I had to take a break from dancing.
At 11pm, there was a Caribbean party, to celebrate New Year's in Barbados. This included fireworks on the veranda. It was too foggy to see much, but the temperature was absolutely delightful. I took a number of dance breaks out on that veranda during the evening - perfect way to avoid overheating.
I knew I would pay for it the next day, but I didn't have the traditional reveler's hangover. No, I was just very tired and had to take it easy all day.
MS News
Opened up my newspaper this morning to find out about some promising results published in the New England Journal of Medicine for a drug called Antegren. I had heard of it before from my neurologist. Since I am still of child-bearing age and have not committed to not getting pregnant, we decided I shouldn't start taking it - put as little medicine in my body as possible for the time being. Of course, the big news for my local paper was that it could be manufactured right here in the good ol' Research Triangle Park.
For more information, check out:
Test drug may mean new treatment for MS, Crohn's
Blog News
I'm probably going to play with a new template over the next few days, since it's been months since the Pooch Parade. Stay tuned for a new look for a new year.
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.
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.
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.
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.
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, 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.
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.
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.
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!)
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).
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.
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.
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.
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.
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.
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.
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.
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.
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