Wednesday, April 14, 2010

Lyme Log: "Silver Anniversary"

Since being sick, I pay so much more attention to the details of the world around me. I love that we have so many pretty things in our yard to watch throughout the seasons. (Thank you Mom for all of your hard work!).

Last week I posted pictures of my favorite tree blooming. The blooms only lasted a couple of days before changing to this 'in between stage'. By next week, the tree will probably be covered in green leaves!

I don't have a lot of news to report. Unfortunately, I spent my "Silver Anniversary" konked out on the sofa the entire day. Last night, I did get to watch Dancing with the Stars though. :) And I feel pretty amazed that it's been 25 weeks.

I'm not completely sure why I crashed so hard, as I had been having a bit 'better' days. But it's a good example of what a 'bad day' looks like. I know it's difficult to understand what my good and bad days look like.

I never forget to take my morning medications, but yesterday I did. My routine is to set my alarm for 30 minutes before I need to start getting up. I take my medications, lay back down, and wait for them to kick in. I usually set it for about 10:45 and get up around 11:15. Check email on my phone. Get dressed in bed while watching a bit of The Martha Stewart Show. Mom gives me my infusion. Then I head to the kitchen for some lunch.

The most crucial medication is midodrine, which raises my blood pressure. I really have no idea how I made this error and missed my meds. While I managed to get dressed, get my infusion, and eat lunch, I didn't feel very well. I just attributed it not sleeping well the night before.

After lunch I suddenly felt like I had to lie down immediately.

I did. And I ended up being konked out on the sofa from 1:00 to 6:00, only getting up to pee. :P

I ate dinner with Mom. Got ready for bed. Watched some TV. Started a bit of the book Good Omens on CD. Cuddled with Asher. Listened to classical music on NPR. Went to sleep at 1:00 AM.

That was my day.

While I didn't feel well, it was still a 'tolerable' day. Why? Because I was able to rest and sleep comfortably. I wasn't in a lot of pain or having such bad ANS symptoms that I couldn't sleep. I felt lousy, and it is always incredibly disappointing to feel like I've 'lost' my day. But, when I can at least comfortably rest, I'm quite thankful for that!

I also learned a big lesson about how much the midodrine really does for me. I remember how much more energy I had when I first started the medication. What I think happened yesterday was my body can do what it has to do (get up, get dressed, eat lunch) without the meds but it's working so much harder to compensate for the lower blood pressure.

The midodrine probably keeps my body from having to spend so much extra energy keeping me upright. So, I think that I was just completely exhausted from the extra effort my body had to exert to get going in the morning.

I thought I might 'recover' after the meds kicked in after lunch, but I didn't. I still feel pretty wiped out today, but nothing like yesterday. I didn't even feel like playing on my phone yesterday! (You know I'm sick when....:))

I guess that sort of sums up a 'bad' day. But certainly not a horrible day.

Tomorrow (Thursday), I'm increasing the Rocephin dose to 1 gram daily. The goal is to get to 2 grams. I'm ready and confident in the decision, but always feel a bit of anxiety about how sick it will make me. I was enjoying having a bit more energy to blog, take photos, etc. and am not quite ready to give that up again.

To all of you who have emailed me and I promised I'd get back to you soon, please, please accept my apologies for not emailing. I'm so sad about being unable to keep in touch. Thanks for understanding that I often have to use my blog as my main way of keeping up.

The best part about my phone is that I really get to enjoy emails now. I can read them over and over at my convenience. Before I got my phone, I didn't have the ability to read emails as they came in and then come back to them whenever I wanted to. And read them lying down! :) This has really helped me to keep up on what is going on with all of YOU! :) I'm definitely reading!

I can't believe it's almost 6 months since I started the treatment. Thanks for continuing to sustain me with your love.



Photos: Weeping cherry tree transitioning from blooms to leaves.

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