Good news on the blood work. My doctor left a message earlier this week that the results were fine. They have to keep checking me every once in awhile, since Avonex can cause liver problems, but so far so good for me.
Thursday, April 24, 2003
Monday, April 21, 2003
Sometimes this disease can be embarrassing.
On Saturday, I was dealing with a fever and fatigue caused by my Friday night shot. I fell asleep on the couch and made us late for our afternoon appointment to sign papers on the house we're building. Then we went to have dinner with some friends that night. I was practically dozing on the couch after dinner, and my hostess thought it was because I was bored. I don't know why I felt self-conscious about saying it was the medicine, but I did. I guess I was afraid that they'd feel bad about asking me to come over when I felt less than 100%, when I had been so excited to receive their invitation.
On Saturday, I was dealing with a fever and fatigue caused by my Friday night shot. I fell asleep on the couch and made us late for our afternoon appointment to sign papers on the house we're building. Then we went to have dinner with some friends that night. I was practically dozing on the couch after dinner, and my hostess thought it was because I was bored. I don't know why I felt self-conscious about saying it was the medicine, but I did. I guess I was afraid that they'd feel bad about asking me to come over when I felt less than 100%, when I had been so excited to receive their invitation.
Friday, April 18, 2003
Doctor's Appointment
Had my regular appointment with the neurologist yesterday. Every three months, I check in, we do a few simple tests, and just discuss how things are going with the disease. Yesterday's appointment was quite pleasant. I've made wonderful progress in the last three months. When he asks me questions about my balance, I can just laugh, because I do so many balance exercises in my Pilates class.
I did have two slightly abnormal things yesterday. The lower number on my blood pressure was high, even when I sat calmly and had it checked again. I blamed it on house anxiety. And during my tests, there were tremors in my hands. Since they showed up in both hands, it seems more likely to be a side effect of my medicine.
I also had some blood drawn yesterday. They do bloodwork every 6 months to make sure everything still checks out. Sometimes, Avonex can cause problems with the liver, so these blood tests can just verify that mine's still OK. I used to be so scared of the needle used for blood tests, and now I just laugh. Nothing like a weekly shot to get me over my fears in that area.
One of the nice things about these frequent appointments is the ability to ask questions in a timely manner. As most North Carolinians could tell you, allergy season is in full swing. Well, three months ago, I didn't care whether any allergy medications interacted with my medicines, but after a few days of sniffling and sneezing, I can assure you that I do now. The nurse ran me a list of all known drug interactions with my medicines, and now I know that I can take any allergy medicine I want when those snifflies return. And after seeing the list (or, more accurately, the lack of list), I can feel comfortable with any over-the-counter medicine now - I don't need to wonder.
Opening the Mailbag
Now time for my own version of viewer mail. One of the most common questions I've been asked, particularly right after being diagnosed, was "What does this mean for any family plans that you and Tim may have?"
I just got my latest issue of Inside MS, which is the magazine for the National MS Society, and they spent most of the issue discussing MS and pregnancy. The information from that matched up with information I've gotten from my doctor and other sources, like pamphlets and conferences.
The basic answer is: it has virtually no impact.
Most women with MS have fewer exacerbations during pregnancy, especially in the last two trimesters. The anecdotal evidence is so strong that there are research studies looking into female hormones and their effect on MS. As far as pregnancy, labor, and delivery go, a woman with MS doesn't usually encounter any special issues.
There is a 20-40% chance of an attack in the period right after delivery. Most people attribute this to the stress and lack of sleep that a new mother faces. This makes breastfeeding a question that needs to be pondered. Should a woman with MS breastfeed her child and take the risk of an exacerbation? Or should the woman get back on her medication and not pass on the benefits of breast milk to her child? From everything I've read and asked, it's a personal decision. My OB/GYN is a breast-feeding advocate, but he recognizes that my situation is special and is comfortable with whatever decision I choose. And since I don't have a child yet, I'm keeping my mind open. That's a decision Tim and I will make if we have a child.
House Anxiety
I mentioned this in my blood pressure section, so I guess I should elaborate...
Tim and I are having a carriage house built. The floor plan is absolutely terrific, and this house will make our lives easier in so many ways:
* Cut down big time on commuting. For example, my commute will go from 20 miles (one way) to 6 miles. Tim gets benefits too.
* No more yardwork! Poor Tim, his schedule is not conducive to getting major yardwork done. And with my heat sensitivity, I'm not a whole lot of help. Now we won't have to worry about it.
* First floor master bedroom. Now when I get tired, or if I ever have any mobility issues, I can go to bed without climbing the stairs.
* Two car garage. Bye bye one-car carport, hello dry storage for both of us. Now in bad weather, we can take Tim's SUV without getting drenched to get in it.
* Very convenient shopping. There's a big strip mall right across the street from the community, so I'll be able to run errands without running all over the place.
* A community swimming pool. My neurologist encourages me to swim, since I can get exercise while keeping my body temperature regulated.
* Family close by. My parents and sister will be living in a different part of the community, so if I have an attack and need someone to drive me somewhere or run errands for me, I've got folks nearby I can call. I could even call them to pick me up at work if I have an attack there and can't drive home.
* We're getting a whirlpool tub! I love luxuriating in the bathtub, and this will be so much nicer than my itty-bitty tub.
I'm sure I'll be talking more about the house over the next year, while we go through the whole process of getting it built. It's exciting...but scary at the same time!
Had my regular appointment with the neurologist yesterday. Every three months, I check in, we do a few simple tests, and just discuss how things are going with the disease. Yesterday's appointment was quite pleasant. I've made wonderful progress in the last three months. When he asks me questions about my balance, I can just laugh, because I do so many balance exercises in my Pilates class.
I did have two slightly abnormal things yesterday. The lower number on my blood pressure was high, even when I sat calmly and had it checked again. I blamed it on house anxiety. And during my tests, there were tremors in my hands. Since they showed up in both hands, it seems more likely to be a side effect of my medicine.
I also had some blood drawn yesterday. They do bloodwork every 6 months to make sure everything still checks out. Sometimes, Avonex can cause problems with the liver, so these blood tests can just verify that mine's still OK. I used to be so scared of the needle used for blood tests, and now I just laugh. Nothing like a weekly shot to get me over my fears in that area.
One of the nice things about these frequent appointments is the ability to ask questions in a timely manner. As most North Carolinians could tell you, allergy season is in full swing. Well, three months ago, I didn't care whether any allergy medications interacted with my medicines, but after a few days of sniffling and sneezing, I can assure you that I do now. The nurse ran me a list of all known drug interactions with my medicines, and now I know that I can take any allergy medicine I want when those snifflies return. And after seeing the list (or, more accurately, the lack of list), I can feel comfortable with any over-the-counter medicine now - I don't need to wonder.
Opening the Mailbag
Now time for my own version of viewer mail. One of the most common questions I've been asked, particularly right after being diagnosed, was "What does this mean for any family plans that you and Tim may have?"
I just got my latest issue of Inside MS, which is the magazine for the National MS Society, and they spent most of the issue discussing MS and pregnancy. The information from that matched up with information I've gotten from my doctor and other sources, like pamphlets and conferences.
The basic answer is: it has virtually no impact.
Most women with MS have fewer exacerbations during pregnancy, especially in the last two trimesters. The anecdotal evidence is so strong that there are research studies looking into female hormones and their effect on MS. As far as pregnancy, labor, and delivery go, a woman with MS doesn't usually encounter any special issues.
There is a 20-40% chance of an attack in the period right after delivery. Most people attribute this to the stress and lack of sleep that a new mother faces. This makes breastfeeding a question that needs to be pondered. Should a woman with MS breastfeed her child and take the risk of an exacerbation? Or should the woman get back on her medication and not pass on the benefits of breast milk to her child? From everything I've read and asked, it's a personal decision. My OB/GYN is a breast-feeding advocate, but he recognizes that my situation is special and is comfortable with whatever decision I choose. And since I don't have a child yet, I'm keeping my mind open. That's a decision Tim and I will make if we have a child.
House Anxiety
I mentioned this in my blood pressure section, so I guess I should elaborate...
Tim and I are having a carriage house built. The floor plan is absolutely terrific, and this house will make our lives easier in so many ways:
* Cut down big time on commuting. For example, my commute will go from 20 miles (one way) to 6 miles. Tim gets benefits too.
* No more yardwork! Poor Tim, his schedule is not conducive to getting major yardwork done. And with my heat sensitivity, I'm not a whole lot of help. Now we won't have to worry about it.
* First floor master bedroom. Now when I get tired, or if I ever have any mobility issues, I can go to bed without climbing the stairs.
* Two car garage. Bye bye one-car carport, hello dry storage for both of us. Now in bad weather, we can take Tim's SUV without getting drenched to get in it.
* Very convenient shopping. There's a big strip mall right across the street from the community, so I'll be able to run errands without running all over the place.
* A community swimming pool. My neurologist encourages me to swim, since I can get exercise while keeping my body temperature regulated.
* Family close by. My parents and sister will be living in a different part of the community, so if I have an attack and need someone to drive me somewhere or run errands for me, I've got folks nearby I can call. I could even call them to pick me up at work if I have an attack there and can't drive home.
* We're getting a whirlpool tub! I love luxuriating in the bathtub, and this will be so much nicer than my itty-bitty tub.
I'm sure I'll be talking more about the house over the next year, while we go through the whole process of getting it built. It's exciting...but scary at the same time!
Thursday, April 10, 2003
Yeah, I know, it's been awhile since I've updated this thing.
My Health
For the most part, it's been OK. I've been burning the candle at both ends this week, getting to work at 7am to cover for a coworker on vacation. Getting out of my routine also meant I forgot to consistently take my medication, so getting overtired and undermedicated led to my complete feeling of rundown yesterday. I forced myself to go to bed early, and I'm doing better today. I'm still tired, but I'm not at that feverish fatigue point that I found yesterday, when I knew for sure I had pushed myself too much.
I thought that I might continue getting up earlier in the morning once I was done covering for my coworker, but considering how tired I've been this week, I doubt I will.
MS Walk
The MS Walk was supposed to be held in this area last Saturday, but I don't think they got a chance to walk because of the weather. I didn't sign up to do it this year, for a variety of reasons. Last year, it was important for me to do it, to feel like I was doing something positive to fight this illness. But I did two fund-raising events for MS last year, and that took a lot out of me. I'm not a fundraiser, yet I managed to raise almost $1,400 for MS last year. I need to give myself - and the generous people who sponsored me - a bit of a break. If the MS Society does the Pooch Parade again, I'll be there, because the dogs had such an incredible time at last year's event.
Flexibility
I know I've been complaining a lot about back pain and stiffness. Well, my hard work in Pilates class has been paying off, and I can honestly say that I'm more flexible now than I have ever been in my life.
A couple of Sundays ago, I woke up so stiff that I could barely bend over. I dragged myself into the spare room and did Pilates for about 5 minutes. Then I leaned over and touched my toes without bending my knees. I've never done that before. That afternoon, I was showing off to my family some of the stuff I can do now. The girl who couldn't sit down, stretch out her legs, and touch her toes can now wrap her hands about the arches of her feet without bending her knees. Tim flexed my foot during a foot massage that weekend and was amazed at how much more flexible it was than in the past.
A couple of days ago, I did a yoga tape. This was after taking a week off of exercise due to injury. I was ready to laugh out loud when it was time to do a variation of the bridge pose. On the tape, the instructor says to put a block under your waist and rest your body on the block. When I started doing the bridge pose, I would have to fight to lift myself up farther so I could put the brick down. This time, I had to lower my hips to rest them on the brick. It's fun when progress is so obvious.
Am I pain-free? No, I still get twinges now and then. But I recover much faster, and am still capable of doing more to get through the pain. I was feverish last night during Pilates class, and I still was performing a lot of the moves. But having to take a week off for injury taught me a valuable lesson - I've got to keep moving to keep feeling good.
My Health
For the most part, it's been OK. I've been burning the candle at both ends this week, getting to work at 7am to cover for a coworker on vacation. Getting out of my routine also meant I forgot to consistently take my medication, so getting overtired and undermedicated led to my complete feeling of rundown yesterday. I forced myself to go to bed early, and I'm doing better today. I'm still tired, but I'm not at that feverish fatigue point that I found yesterday, when I knew for sure I had pushed myself too much.
I thought that I might continue getting up earlier in the morning once I was done covering for my coworker, but considering how tired I've been this week, I doubt I will.
MS Walk
The MS Walk was supposed to be held in this area last Saturday, but I don't think they got a chance to walk because of the weather. I didn't sign up to do it this year, for a variety of reasons. Last year, it was important for me to do it, to feel like I was doing something positive to fight this illness. But I did two fund-raising events for MS last year, and that took a lot out of me. I'm not a fundraiser, yet I managed to raise almost $1,400 for MS last year. I need to give myself - and the generous people who sponsored me - a bit of a break. If the MS Society does the Pooch Parade again, I'll be there, because the dogs had such an incredible time at last year's event.
Flexibility
I know I've been complaining a lot about back pain and stiffness. Well, my hard work in Pilates class has been paying off, and I can honestly say that I'm more flexible now than I have ever been in my life.
A couple of Sundays ago, I woke up so stiff that I could barely bend over. I dragged myself into the spare room and did Pilates for about 5 minutes. Then I leaned over and touched my toes without bending my knees. I've never done that before. That afternoon, I was showing off to my family some of the stuff I can do now. The girl who couldn't sit down, stretch out her legs, and touch her toes can now wrap her hands about the arches of her feet without bending her knees. Tim flexed my foot during a foot massage that weekend and was amazed at how much more flexible it was than in the past.
A couple of days ago, I did a yoga tape. This was after taking a week off of exercise due to injury. I was ready to laugh out loud when it was time to do a variation of the bridge pose. On the tape, the instructor says to put a block under your waist and rest your body on the block. When I started doing the bridge pose, I would have to fight to lift myself up farther so I could put the brick down. This time, I had to lower my hips to rest them on the brick. It's fun when progress is so obvious.
Am I pain-free? No, I still get twinges now and then. But I recover much faster, and am still capable of doing more to get through the pain. I was feverish last night during Pilates class, and I still was performing a lot of the moves. But having to take a week off for injury taught me a valuable lesson - I've got to keep moving to keep feeling good.
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