This Week's Update

So, I think I'm getting worse. My fatigue has been so bad I get out of breath walking from my bedroom into my kitchen, and the weakness in my arms and legs makes them feel like they weigh 50 pounds each. I think I am feeling better about all of this than I was last week, for sure. Thank goodness that that's getting better. I am trying to remember what my doctor said about my getting worse before I get better...getting really sick means that the treatments are working! Woo Hoo!! I have another doctors appointment with my specialist in Seattle on Monday, so I may have another update at that point. 

My sister-in-law discovered a tick crawling on her two-year-old's jacket last week, during an outing only a few minutes from their house. Because they are aware of what has been going on with me, they understand the danger associated with ticks. Ticks can be found anywhere there are deer, particularly areas that get a decent amount of rainfall. For more information on how to avoid a tick bite and possible exposure to Lyme, read through my previous post, "An Ounce of Prevention." I am making it one of my personal missions to help other people avoid having to deal with what I'm going through right now. Please take a moment to read through it!

Today

I'm feeling better this week than last, but today is not a good day. :( Still, I am grateful for progress, however slight it might be. Last night my neighbor came over to check on me and she brought me a DVD about Lyme called "Under Our Skin." She had mentioned to her son that I had Lyme, and he had sent it with her for me to watch. I actually already have it, it's very good and very informative. I was really surprised that her son had it, because it seems like such an obscure topic. Anyway, if you are interested in learning more about Lyme, I would highly recommend it.

Up and Down...and Venting

So this past week I've had a hard time dealing with what's been going on. The antibiotics and other meds are definitely helping. I'm doing a lot better than I was three months ago. But it's still very much a day to day thing, and I guess the whole business of being sick (in bed sick) for the better part of six months now is starting to take it's toll.

Don't get me wrong. I'm grateful to be having better days, and to see the light at the end of the tunnel. It's just that when I have energy and minimal pain on Monday, I expect to wake up on Tuesday feeling perhaps even a little bit better than the day before. When you're recovering from a cold or the flu, that's how it usually goes, right? Right. Well, when you're dealing with chronic illness it's so discouraging to wake up the next day only to realize you're feeling way worse than you were the day before.

In the last six months I have had friends that have had the patience and thoughtfulness to come to my house or take me on outings when I am feeling ok, which has really helped me not to become depressed. Hopefully, when I start finally feeling better, I don't want to have to look back and see that I've lost out on two years of my life to being sick...I've already been dealing with this for over five years, and while I did my best to muscle through all of that, I realized that somewhere along the line I've forgotten how it feels to really feel good. Most of the time, especially if I'm concentrating on it, I can pretend that I feel ok, and make the best of the situation. But the in and out daily monotony of waking up, starting my out-of-control pill regimen, and basically laying in bed hurting all day is starting to wear on my positive attitude. 

Yesterday I got an invoice in the mail for $3100.00 for lab tests required to get a diagnosis. My insurance has refused to cover any of my treatments, so I've been paying for everything out of pocket, and so far since I was diagnosed in January, I've spent over $7,000.00 up front in cash on this...that doesn't include those lab tests. Wondering why my insurance wouldn't cover this stuff? Watch this clip. It's all a little overwhelming...but I know that somehow things will work out, they always do. The worry over finances probably only adds to my melancholy mood tonight. 

If you're wondering exactly how devastating Lyme can be, watch this short BBC Clip describing the Lyme Disease problem in Britain. Or this one, by Turn the Corner Foundation, a Lyme advocacy group dedicated to Lyme research & education.  Clearly, not getting treatment is not an option...it's a catch 22 if I ever did see one.

I am beginning to develop a lot of empathy for people who deal with devastating illnesses like cancer, and all the implications that are involved. The physical pain and symptoms are manageable most of the time; the endless medications (which make you sicker) are manageable most of the time; the financial strain is manageable most of the time. But put all of these together, combined with people's lack of understanding of Lyme (and therefore lack of sympathy or concern) in general, and at times it does seem to be an insurmountable situation.