Monday, May 3, 2010

Are you better yet?

"Are you better yet?" my 3-year old niece, Harper, asked me today when we were on skype. I hadn't skyped with my precious nieces (who I ADORE) in weeks and had a horrible day today. Felt ill, had excruciating pain in my liver and stomach area, and then found out my labs reflected that my liver/gall bladder/pancreas weren't doing well and reacting badly to the meds. I had to stop treatment for a while, not sure how long, maybe a few weeks, hope not longer. I felt lost and trapped - couldn't be well without the drugs, couldn't be well with them. I've been in this predicament before where the drugs were necessary but my body couldn't handle them. The fine line in Lyme treatment, and I had exceptionally sensitive organs.

Anyways, when Harper, my precious outspoken adorable 3-year old niece asked me that question with a hopeful look in her eye, I couldn't bear it. I wanted to die inside. Even though I've explained to her many times that I have a 'disease' that I have to take a lot of 'medicine' for and not a 'cold,' how could this little girl be expected to understand how long, complex, and irrational the treatment cycle is for late-stage Lyme? Especially when most adults who are my age can barely understand it? And most doctors in America do not understand it? And I've been treating 19 months and am STILL not 100% better?

With most other diseases, you either know or don't know at this point. Late-stage Lyme is an incredibly horrific disease in so many ways, and very much so on the psyche because of how long treatment takes when the disease is not caught early. It pillages your body disguised as other 'ailments' for years until it wears you bone-thin until you are a puddle of nothingness. After that time, you search for answers across the country, and when you get your diagnosis - Lyme - you are ecstatic. Hooray! It's Lyme! I'll bee better in no time. THEN you experience with every fiber in your being the real truth about this disease - the paralyzing, physically and psychologically disabling chemotherapy that is called Lyme treatment. (My doctor calls it chemotherapy because he has seen how horrific it is on patients, and his own 5-year old daughter AND wife went through actual chemotherapy for cancer). Anyways, I digress.

Back to the story..

I wanted to cry at Harper's question but had to keep a happy face on. "Well," I responded, "I'm a little better, but I still have to take my medicine for a little while. Can you girls come be my special doctors when you come here to visit?" They (both my nieces, 6-year old Palmer and her) said, yes immediately. Of course they would be my 'special doctors.' They are coming to stay here at my parents in July for a month. I hoped distracting them with 'playing' doctor would make them forget that I was 'really' sick.

When I couldn't say I was immediately better, it brought to light the reality of my situation. The reality being that I am some days better, and some days horrible. That on some days (for which I feel gratitude of the highest kind), I can walk 20 minutes and even go out to a meal or a movie or even make it through Target without hitting the emergency help-Im-going-to-faint-page-my-mom-IMMEDIATELY button. That only days later, I can be stuck in bed all day for days or weeks, barely able to stand up, needing sunglasses to deal with even indoor lights, having a seizure, and in excruciating pain, nauseated and filling up my bed with pools of tears and grief.

Even almost 2 years after I was diagnosed, I still don't know when I can expect a full remission. And my doctors have some 'idea' but the time to heal from this extremely complex disease is just as much of a guessing game for them, because people respond SO differently to treatment and have varying degrees of illness and immune system response.

"Why are you acting like that?" Harper then asked.
"Like what?" I said.
"Like you're all better," she asked with her big brown doughy eyes that made me melt.
"Well, I am better I told you," I felt like I was lying but had to keep my smiling face on for them. Not only that; seeing them on my computer screen was the only thing that made me smile all day.

Then Harper asked "Who is your doctor?" After I told her his name, she said, "I am going to beat up that Dr. ___!! I am going to knock his head off!"

Palmer (my older niece) has caught on to this and said, "I'm going to take a phone and poke out your doctor's eyes. I hate him for keeping you so sick on this medicine!"

"No, my doctor is helping me get better, sweetpea," I said. This isn't the first time Harper and Palmer have expressed anger at my doctors for 'putting me through this.' Although I am thankful for my doctors, it makes me laugh and my heart smile to think my little angel nieces wants to beat someone up because they think they are responsible for me feeling so sick.

They don't know any better - they know something or someone is hurting their aunt - and they want to fix it. Who can blame them? If only I could explain to them (or most people) the complex web of events, perceptions about Lyme, ignorant doctors, and corruption in the medical and insurance industry that have all melded together to bring this about.

Palmer (my 6-year old niece), who is a bit more cognizant of my disease because of her age, asked me once, about 6 months into treatment, "You still HAVE that thing?" when I told her I was taking medicine for my Lyme. She, like so many others, thought it would just go away like a really bad cold. I laughed so hard when she asked me this. She began to catch on later, and I kept telling her all the things we would do together when I was better.

"When you're 7 years old, I am going to take you rock-climbing and snowboarding, ok?" I said at the park one day.
"But how can you take me to do those things if you're sick?" she asked.
I told her of course I would be ALL BETTER when she turned 7. Silly girl.

But will I? She just turned 6 last month and the scary answer to that question looms like a cloud over my spirit...haunting me more on days like today when I feel ill, lost, and unable to even tolerate my treatment.

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