I know a lot of you have probably been waiting for this post for a while, and to be honest I’ve been waiting to write it….because I don’t really have much to report. I was hoping to have some kind of dramatic change (goor or bad) or something to report. But honestly, at this point there’s not a lot to say beyond what I’ve already said.
I am in my 11th week of IV antibiotic treatment with the PICC line. I know it can be several more months before I begin to really notice a difference, but I am not one for being patient, especially when my life is on the line. For the first 8 weeks or so I felt like I just remined at a constant level of yuckiness (that is the technical term in the Lyme world for it). I felt awful, but there was no change. It felt like having the flu for about 8 weeks, however with mind boggling pain. But then finally I started having ups and downs again, which I took for a good sign. I did have what I believe to be a herx reaction last week, one like I haven’t had for quite a while.
When I discuss my progress with my Lyme doctor, he’s always asking me to place myself on a scale of 0-10. 0 being when I got sick 11 months ago, and 10 where I was before getting sick. I’ve been at a steady 6 for quite a while now. I’m frustrated by that. But I realized at some point in the last couple of weeks that I need to be able to place myself on a scale of 0-100. This disease is so long, and brutal that any change felt can be at times so small, that it can’t be quanitified on a larger scale. But any change to those of us going through such levels of pain and despair feel that the change is something big.
The journey of Lyme disease can go on for so long, that it’s hard to say you’re at a “6″ for several months, because then it seems as if I’m not progressing. So if I change my scale around, I’d say that I’m now at a 64 out of 100. I feel better knowing that I’ve gone from a 60 to a 64, then saying I’m still at a ’6′. If I look at yesterday I see no change, and I get frustrated. If I remember back to July (as torturous as it is just to remember how bad it was), I see great change.
That’s what gives me hope to keep going until tomorrow, because while I may not feel any better tomorrow than I do today (and I feel horrible today), I will still be better than I was a few weeks ago, and even better than I was a few months ago. So I keep up the fight, because as slow as it may seem at times, I am moving in the right direction.
How can any doctor or organization tell me differently? Or tell me that the treatment I am being given cannot be proven to be effective? I am living proof. Lyme disease, and it’s co-infections have caused absolute havoc in my body for years, it is going to take a long time to clean up the mess left behind. But I am getting better. I may not ever be 100%, or I may end up 110%, only time will tell. But I will be better than I was, and that’s all that matters.
So I know many of you are just as frustrated as I am that I’m not suddenly “better”. The best I can do is let you know we ARE getting there, slowly but surely. And it’s because of so many of you that I keep on fighting, because you give me hope through your support, your love, your prayers, your words of encouragement and most importantly your laughter.
We are approaching one full year of being sick very soon. When I think that it’s already been a year I feel discouraged, when I look back and realize how far I’ve come in 12 months I am full of hope again.
The PICC line and IV meds are definitely not a picnic in the park. Actually, they are not a picnic anywhere at all. But it’s nothing I can’t handle. Even when things go wrong, as they did earlier this week, and blood is coming out of places it shouldn’t, and lines are falling apart, you can surprise yourself at just what you CAN handle without losing it all over the place (which is usually my first reaction, especially when I see blood). A year ago if you had told me I’d have to do any of this I would have told you I couldn’t. We learn what we are truly capable of when we put ourselves in front of that which we think impossible.
Every step of my Lyme journey has taught me that. I still remember the look on my mother’s face the first day the home nurse came to change my dressing. She looked rather pale as she said “there’s a reason I didn’t become a nurse”. Now she is donning gloves and masks like a pro, able to change my dressing as if it never bothered her. It’s always hard to see the blessings behind so much pain, but there is an evolution of self that goes along with undertaking a journey like this, and it’s truly a blessing when you are able to see that.
So stay tuned…as we move from 64 on the scale on up, because we are moving. I can’t wait for the day I can report back to you that I felt no pain for a straight 24 hours. It’s still a ways off, but I’m not giving up until I get there. So don’t you give up on me either.