Sunday, September 29, 2002

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

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

Friday, September 27, 2002

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

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

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

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

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

Thursday, September 26, 2002

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

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

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

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

Saturday, September 21, 2002

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

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

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

Thursday, September 19, 2002

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

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

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

Sunday, September 15, 2002

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

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

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

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

Friday, September 13, 2002

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

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

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

Wednesday, September 11, 2002

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

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

Monday, September 09, 2002

Training Day

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

Saturday, September 07, 2002

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

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

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

Sunday, September 01, 2002

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

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

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

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