Wednesday, November 23, 2011
Whenever I get nervous about anything (not just health related), I ask myself, "What's the worse case scenario?"
I had to ask that question many times throughout the course of Lyme pregnancy, and as someone still undergoing some heavy treatment, I don't anticipate stopping anytime soon.
During pregnancy, I worried about not being able to care for my babies. I feared the dreaded relapse, and I didn't even want to think about what would happen if I passed on the disease. Worst case scenario? I'd find help in advance, whether it was family, friends, or if we were desperate, paid. I'd push through another round of treatment with the upper hand, as I've already seen rock bottom and and it's not my first day on the job, and of course, if my babies were ill, we'd treat immediately, let the guilty feelings go, and put all of our efforts into fixing and moving on. Being rational as often as possible is the key to getting through this journey smoothly.
Often times easier said than done. As I'm writing this, I'm tucked away in a bedroom, hooked up to an IV, listening to a chorus of cries and wails coming from the living room. My husband is juggling both unhappy babies, as well as a whimpering dog. Quite the symphony. Undoubtedly, someone has a stinky diaper, someone is hungry, and everyone is overtired. Nothing I can do at the moment, though, and quite frankly, there's little I can do to contribute for the time being. Anxiety and guilt on my part? Oh yeah.
Worst case scenario? Twenty-eight more days of hearing my family soothe the Crying Choir while I blast out this last round of Vancomycin. That's less than a month. Will I be cured? Probably not-- sorry, I'm not optimistic anymore--however, I will feel better than I do now, and even now, I've certainly been much worse off than this.
I was afraid to start this treatment. What if I'm knocked completely on my ass? What if I can't find help and I can't handle everything on my own? What if I'm leaning too hard on family, and they start to resent having to help all the time? It's only been five days of treatment, and so far, all of these things have happened at some point (sooner than I expected!) You know what? We've revised plans, had heart-to-heart talks, taken it day by day, and we've made it so far.
This is all about perspective. Some days, during pregnancy and beyond, will be painful and scary. We are literally fighting to get our lives back. When there are children in the picture, the stakes are higher, and everything seems to matter a million times more. I've noticed that 90% of the time, in retrospect, it's never as bad as I feared it would be in my mind.
For me, relapse has been no picnic, but these symptoms aren't strangers, and I'm doing what I have to so they'll go away again. I have a lot of love and support, especially during the hard times, and despite some discomfort, I'm pretty happy. My kids bring me joy and comfort, and I bring the same to them. Not the kind of life I had in mind for us, but who knows what will happen down the road. Worst case scenario: I stay sick. I wouldn't trade this life for anything, even if it is kind of broken.
Thursday, November 10, 2011
(Photo taken with Instagram: MsBirdieB)
It's been a couple of weeks, and I'm still trying to work out details with doctors and insurance for my last round of IV treatment.
I started questioning the need for IV in the first place after a solid week of improvements--I definitely bounced back from all of the viruses our family passed around, and I've been able to be pretty active with the kids. Definitely not the same sick person I was when I last wrote, however, many annoying symptoms remain, mostly involving joint pain, blurry vision, memory, and vertigo.
I'm sticking with the plan that if insurance covers me, great, and if not, I'll move on to plan B. What's plan B? Who knows--right now every last bit of my energy has gone into plan A. Ha!
I received my test results by phone today.
Initially, Lab Corp gave me a positive IgM band 23.
Igenex provided me with a positive IgM for 41, and an indeterminate for bands 31 and 39
I also got a positive IgG for band 39, 41, and 58
Apparently, I have put all co-infections to bed, because those were negative.
Here is a link that explains what the bands are, in case you're new to IgeneX or western blot testing.
Here's the bottom line:
Could this all be a result of pregnancy? Maybe, maybe not. It's hard to say, because I don't think I was ever in remission before or during both of my pregnancies. I truly believe that no one (ILADS or IDSA followers) knows enough about the disease at this point to pin down where things go wrong or why this disease is so hard to treat. Everyone seems to have a theory, but in reality, most are throwing solutions out there to see what sticks. That's why treatment is so "individualized."
I think a lot of things come into play in my case. Yes, the pregnancy was hard on my body; Pregnancy is hard on a healthy body. No, I wasn't considered "cured" when conceived. I've also dealt with three viral illnesses over the last couple of months, and I've also struggled with finding an antibiotic that works well for me. I've been run down, stressed, and lastly, it took over ten years to get my Lyme diagnosis. Who knows what the hell goes on in a body that's been infected without treatment for so long.
What I do know is that the only way to get through this is to remember that, even though Lyme hurts in every aspect, it does not have to dictate your outlook. Three years ago, I would curl up in a ball and feel sorry for myself on the bad days and come up with all sorts of dismal thoughts about how I would never be able to move on with my life. I didn't realize that as I was thinking these thoughts, my life was moving forward anyway, whether I wanted it to or not.
After a bunch of life changes, financial distress, and two kids later, I am still here. My family is still here, and it's grown. Despite a few hiccups and scares, I am relieved that my children are healthy, and I can't imagine a world without them. So, instead of allowing the fear to keep me from enjoying what I have, I decided to push through and live as if I'm healthy. When I need to rest, I rest. If I need more treatment, I need more treatment. Someday, maybe I won't.
As cliche as it sounds, when you have a chronic illness, you have to take it day by day. Today sucked, and I've spent most of the afternoon curled up in a chair with a baby in one arm, trying to complete this post. But yesterday, we took both kids to the playground in our neighborhood. I photographed the kids, helped Wyatt go down the slide eight million times, and giggled with him as he learned that he could blow the seeds off of a dandelion. It was truly a fun experience that made me appreciate all that I have. My bones ached, but whatever, they would have ached at home, too. My vision was extra blurry, and as I teetered down the street and my husband asked how I was feeling, I responded, "I'm on a boat!" (From the funny SNL video that's too explicit for me to link to here.)
Since I've had kids, I've stopped asking so many of the "why" questions. I'm sick. I'm not sure how long it will last. I will do what I need to do to get better, and I will love my family and have the best time that I can as I go through treatment.