My teen is on the couch, computer on her lap, researching Lyme Disease. She’s making a list of alternative therapies, supplements and herbal treatments that might help my recovery. She’s trying to understand the nasty little spirochete, how it invades the body, hides from antibiotics and lays dormant in the nervous system until the coast is clear.
She wants to find a cure, because she overheard me having a breakdown last night.
It started simply. Dave asked me how things went at my doctor appointment . I told him. I showed absolutely no progress in the past month. And then I told him about the people I met in the waiting room.
She turned from the reception window where she had just paid her bill. She scans the room.
“You all don’t look as sick as I do. Why?”
She looked right at me. She appeared exhausted, pale and weak. Her emotions were clearly close to the surface as she searched the waiting room for a patient who looked sick.
“I’ve been in treatment for a while now. Did you just start?”
”It’s been three weeks,” she replied.
“The first couple of months are the worst,” I assured her.
“How long has it been for you?”
I tried to answer in a vague way at first. “Right now, I’ve been back on meds for four months, but this is following a relapse.”
She wanted to know how long I’ve been sick – in total. I hesitated.
“Eight years this month. But I was misdiagnosed. So it shouldn’t be like this for you.” I felt like a fraud. I had no idea if her fate could be quite similar to mine. I hope not.
The woman across from me joined the conversation. Her son has struggled for 18 months now. The disease settled in his spine, but they stopped treatment when he felt good again last summer. Now he’s getting IV antibiotics through a PIC line. He chimed in to tell his story, never looking up from his iPhone game. He just started back at school this week after missing three months due to the pain that kept him from getting out of bed.
” I wish I hadn’t stopped the treatment so soon. I feel awful that I made that decision and now he’s suffered again.” I could see the sadness, the guilt in his mother’s eyes.
It wasn’t her fault that her child was suffering. This is a sneaky, awful disease.
I’m recounting the events to Dave and in the next moment tears are streaming and I’m yelling and trying to get through to him (but really the whole world) that the pain is so bad some days it literally hurts to hold up the iPad. Just because I push through it every day like a slow motion blonde GI Jane, doesn’t mean it isn’t there. I feel physically broken. Am I breaking mentally?
I ranted more about how when I mention the muscle and joint pain that people are constantly telling me I should “try a little exercise.” It doesn’t matter if they are right or not. It’s not validating in any way. It implies that my pain is from sitting on my ass too much. It implies that I’m not fighting with all I have in me.
[Do you think I would give up sugar, wine, cheese and gluten if exercise could fix it all? Then you don’t know me at all!]
It shows me that there is no understanding of what it is like to have a pain so deep that your bones hurt when you are sitting still and that vacuuming brings on more, never mind a trip to the gym. But how can someone understand that if they haven’t been through it? They can’t. I know that. I also know that they are trying to be helpful.
Glass keepsake necklace by www.SusanaManzana.com.
I’m not writing this for sympathy. I don’t want those looks from my friends and family. Please don’t say “oh, you poor thing.” I may want to hit you.
I’m writing this because I’m tired of holding it in. I’m writing it for myself and for others suffering with Lyme (which is becoming a dangerous epidemic). I’m writing this to raise awareness of Chronic Lyme, the existence of which is denied by countless doctors right here in the State of Connecticut because the insurance companies told them they won’t pay. Since insurance companies won’t cover costs, doctors aren’t diagnosing and treating properly, causing long term damage to their patient’s health.
The first doctor I saw told me I was fine and to take some tylenol for the pain. Remember the boy that I met in the doctor’s office yesterday? His pediatrician saw a rash, verified the bite, but said it was only necessary to do 24 hours of antibiotics. If treated right in the beginning with 4-6 weeks of antibiotics, that doctor could’ve saved this child a year and a half of pain.
Today I can admit two things:
All I want is to be better.
I am terrified that I won’t ever be healthy again, but I’m not ready to accept it.
My daughter has now been researching for three hours. Her list of remedies includes a variety of vitamin supplements and herbal concoctions. She’s working on figuring out which herbs would be the most beneficial and how she could combine them so that it would be easier for me to take. Her efforts are so genuine and sweet (not to mention intelligent) that I’m tearing up again.
Now I’m piecing myself back together. Today, the hope in her eyes is my glue.
When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile. ~Author Unknown
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