I haven't posted anything since October since neither Josey nor I knew what to say. It's been a hard road and we just returned from an appointment with Josey's LLMD in Washington, D.C., where she had a PICC line put in and began IV antibiotics. These will be given at home and will likely be part of our life for at least six months. She'll still take about 40 pills a day and have IV fluids on the days she doesn't get IV antibiotics.
The "Top 10" list is in no particular order and after writing it, it sounds negative to me. I decided to post it anyway since it's reality and things I've heard Josey say. She wrote a long letter last spring, to no one in particular, that included many of these statements.
Other Lyme patients have told me they feel much the same.
10. Quit telling me I look good. I feel terrible so looking good doesn't matter much to me.
9. I know you're tired of me not being better yet. This is a long process and I'm tired of it, too.
8. I'm afraid you're going to forget about my very existence. If you think of me, tell me. Call, text, or send a card or show up.
7. Prayer helps so don't just say you'll do it. Really do it.
6. The world is moving on but I feel like I'm not and worry I'll never be a part of it again. You're getting college acceptance letters and senior pictures and going to prom. I'm feeling cheated and although I really am happy for you, I grieve the loss of those things and wonder if I'll be in this bed forever.
5. You don't want to know how I feel. You want me to say I'm fine when I'm not, so you'll be reassured. If you see me out, don't assume I feel good. I needed out of the house so badly that I risked my health to do it. I'll pay for the excursion for the next three days with pain, extreme fatigue, and other symptoms.
4. I forgot that conversation we had yesterday. I wonder if you're messing with me and we really never talked. Don't be offended; be honest and patient with me.
3. Some days are better than others but I can't predict which days or even how I'll feel from one hour to the next. I'm not trying to avoid you when I have to cancel plans.
2. When you complain about things in your life, I'll just smile and agree with you . You won't know that later I'll cry because I remember when those were my biggest worries, and hope someday they will be again. Still tell me, though, because I need to feel connected to you.
1. Laugh with me. I need that as much as anything else.