Thursday, October 31, 2002

Happy Halloween, everybody!

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

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

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

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

Wednesday, October 30, 2002

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

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

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

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

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

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

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

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

Saturday, October 19, 2002

Lots to report today.

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

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

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

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

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

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

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

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

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

Friday, October 18, 2002

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

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

Thursday, October 17, 2002

Lots of news to report today...

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

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

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

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

Wednesday, October 16, 2002

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

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

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

Monday, October 14, 2002

Whoa, falling behind on my updates...

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

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

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

Tuesday, October 08, 2002

Long overdue update...

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

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

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

Friday, October 04, 2002

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

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

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

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

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

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

Thursday, October 03, 2002

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

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

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

Wednesday, October 02, 2002

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

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

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

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

I'm just being pickier.