Tuesday, August 27, 2002

The energy level is much higher now. Don't know whether to attribute that to the food, or just the passage of time since I had the shot. Whatever the reason, I feel a lot more like myself today...at least, as much as possible, given the rain falling outside.

Monday, August 26, 2002

Oh, cool! I sent out the link to this site yesterday, and I've already gotten emails!

I have been absolutely wiped out since last evening. Yes, I went to the pool yesterday, but I either stayed in the cool water or stayed in the shade the whole time, so I definitely did not get overheated. I still felt fatigued this morning, even after a solid night's sleep. I did read that weakness and anemia are side effects of Avonex, so I've been trying to pay extra-special attention to my eating habits today. That roast beef sandwich tasted very good at lunch - gotta get my iron. Hopefully this fatigue will subside soon.

Saturday, August 24, 2002

Shot training is over, and I've gotten through my first shot. It wasn't nearly as awful as I expected it to be. My hand shook during the shot, but I didn't hurt myself. That turned out to be a blessing in disguise. Tim is so worried that he's going to hurt me, but knowing that I didn't hurt myself with such a shaky hand should reassure him. Having Tim and Sue along insured that the situation could not be taken very seriously...and in this case, that was a very good thing.

I was warned about the side effects. It would not be unusual to have a fever of 101 for most of the day, or violent shaking chills. Nausea was also a possibility. When all was said and done, my fever never went higher than 99, and I was more tired than usual, but that's all. I'm one of the lucky ones. I still plan to take my Tylenol or Advil faithfully on shot day, though...better safe than sorry. I've heard that the early shots have the worst side effects and that you get used to it over time. Needless to say, I'm relieved that all went so well for the first.

One of my cyberfriends sent me a pack of Winnie the Pooh bandaids. Funny, I had bought the exact ones for myself earlier in the day. Lisa knows me so well.

So it's two days later, and I feel fine. I can still find the spot on my leg where I gave myself the shot, but it just looks like a freckle.

I can do this. The concept of injecting myself with medicine once a week was freaky, but now that I've done it once, I know I can do it.

Tuesday, August 20, 2002

The doggies provide an appropriate background, since I signed up today to participate in the MS Pooch Parade on Saturday, November 2nd. I will be walking 3 miles with my Yorkshire Terriers, Matilda & Eleanor, to raise money for MS. To donate, just click on the link at the side of this page. If you fill in my last name (Sparks) and state (NC), you'll be able to find the link for me and the Pooch Parade.

3 miles should be interesting - I'll have to get the girls in shape by then. Tilda is 11 and Ellie is 10, but they're doing well for their ages. I know Ellie can do 3 miles with no trouble, but Tilda tends to spaz out at the beginning and tires at the end. We'll just have to do lots of practicing between now and then, once the heat dies down a bit. Given how hyper they get when they see their leashes, I'm sure they'll enjoy the training!

As I get this blog in better order, I'll attach links to make it easier to access informative sites. Right now, I've got the donation link at the National MS Society site. I've also got a link to MS Active Source, an information center provided by the company that makes my medicine.

Monday, August 19, 2002

The training appointment is scheduled for Thursday. I'll have family with me so that they can learn how to administer the shots too. I've got the day off from work, in case I'm bothered by side effects. Sounds like everything is a go!

Friday, August 16, 2002

Today's Update: The medicine is finally here!!!! Just because a process that I was told would take "3-5 business days" took nearly 2 months to complete. Warning to any MS patients out there - just because the literature says they'll call back doesn't mean they will. I got six different stories during my last six phone calls, and then they lied to my neurologist about not being able to get in touch with me. But the Avonex is safely in my refrigerator, where it will stay until time for my shot training. Waiting to hear back from my doctor's office on when that will take place.

Friday, August 02, 2002

The story so far...

My saga started on a Saturday in late February, when I had a dizzy spell in the grocery store and saw this big explosion of light in front of my face. Once I got my balance, I went on my merry way. The next morning, I realized that my left eye was blurry. Quite blurry. I've been quite proud of my 20/20 vision, so this was a noticeable inconvenience, especially when it started to hurt. Over the course of the next few days, the vision in my left eye kept fading more and more, as I started my Local Tour of Doctor's Offices. My primary care physician sent me to the opthalmologist, who diagnosed optic neuritis and scheduled an appointment with a neurologist.

When I hit the Internet, I learned that quite a large percentage of people who have optic neuritis - more than 50% - either have multiple sclerosis or will be diagnosed with it within 5 years. What the hell? Me? A relatively healthy 34-year-old has MS? I panicked. Then, over the course of the next few weeks, I read anything and everything I could about MS.

I also took lots of tests. Blood tests, visual evoked potentials tests...and the dreaded MRI. I tried to be a big girl and get through it without drugs (bad move) and ended up freaking in the MRI tube on the first try. The second try was successful, thanks to Xanax and Valium. So much for being brave. I had to be in that @*(%@#^% tube for almost 40 minutes, so that they could take pictures of my brain with and without dye injected. As I left, I pointed to the screen and said, "This is your brain. This is your brain on dye. Any questions?"

The questions were answered the next day. Caesar was right, beware the ides of March. Because on March 15, 2002, I learned that I had MS.

I also learned that I wasn't going to die from this illness. It could shorten my life span by a couple of years, but it probably wouldn't kill me. After hearing of my post-MRI meal of chili dogs and baklava, my neurologist had plenty of ideas on what would kill me before MS played a part.

I also learned that the stereotypical image of an MS patient as someone debilitated and in a wheelchair is not the more common picture of MS. Yes, 25% percent of people with MS may need to use a wheelchair, but that still means the vast majority do not. As I've been meeting more and more people with MS, I've been learning that there are a number of people managing this chronic illness. They have MS, but it's just something that needs to be managed. It doesn't control their lives.

So where am I now?

I'm dealing with the joys of insurance companies, doctor's offices, and drug companies, trying to get started on one of the wonderful medicines available to people with relapsing-remitting MS. Hopefully, I'll be reporting soon on my first experiences with Avonex.

I've learned first-hand that heat can temporarily bring on symptoms. Twice I've experienced numbness in my right leg when I've gotten too hot, and I've gotten fatigued a few more times than that. The symptoms go away quickly enough, once I've gotten myself into a cool environment and rested for a little while.

I'm also still working full-time and keeping up a very busy life. I refuse to let this illness become who I am. Yes, it's a part of me, but just a part. There's a whole lot more that I have to offer than that.