Sunday, July 3, 2011

Lots On My Mind

We spent a week in New Hampshire on a lovely family vacation. I knew before I left that something was wrong health wise again. I'd been feeling awful and had increased generalized pain.

My knee swelled up. Sexy isn't it.

I came home to 4 phone calls on my answering machine. Two from my primary MD and two from my Rheumatologist. My Lyme test was positive again. I immediately burst into tears. I knew it was but you get to a point with chronic lyme that you dismiss symptoms and don't believe what your body is telling you. Please God let it be anything but that.

In August of 2008 I was bit by a tick. In knew I was bit but didn't know how sick it would have made me. Within 3 days I was gravely ill and told I had Erlichiosis but that a 21 day course of Doxycycline would have me fixed up in no time. Well I improved some but by December I was deteriorating further. I had trouble walking and concentrating and couldn't type. I had word finding difficulty and a worsening headache that wouldn't go away and if I worked a night shift as an RN in the ICU, it would take me 3 days to recover. But the headache. Dear God the headache. Symptoms still vary day to day. My arms go numb making driving difficult. My muscles twitch and groan at the slighest exertion. My left eye droops. Sometimes it takes what seems forever to get through one paragraph in a book.

More bloodwork revealed that I also had Babesiosis and I would need IV antibiotics. But I had an anaphylactic reaction to the antibiotics after 5 days and then spent 10 days in the hospital being pumped full of steroids, IV fluids, narcotics. I had MRI's, lumbar punctures and had my gallbladder out.

Since that time it's been an ongoing battle. I've educated myself and despite my doctors believing I have Fibromyalgia, insisted on the Lyme test again. I see a Lyme specialist in a few weeks. Not sure if I am happy about that or just terrified. I have had 5 positive Lyme tests and 3 different tick borne illnesses. There is pain every single day and I walk with a cane. I have word finding difficulty. I'm on permanent disability and have a handicap parking permit. When my disability was approved the relief was great financially but I sat there and stared at the approval and thought, "Congratulations, you're disabled."

People look at me and see how much I do accomplish on a daily basis. I volunteer at my church, in my homeschool group and do a ridiculous amount of things for my family. Yet every single day putting my feet on the floor in the morning is an accomplishment. Shaving my legs is an act of God.

I push myself every single day to accomplish the most basic tasks. I have to. I worry how much damage this freaking vector has done to my body. I wonder if my strength will ever come back or if I will have a day without pain or without some weird symptom wreaking havoc with me.

Yet the CDC insists all my symptoms are in my head. They have set medical protocols that are damaging patients. There is an old Audubon saying, "When the bird and the book disagree, believe the bird." Or maybe it's the "if it quacks like a duck" saying that needs to be recognized.

I take care of myself the best I can. I rest, eat right take the homepathic treatments as well as the antibiotics. Yet somedays even this is futile. I move on because I have to. Because if I give in to this disease, it will swallow me whole. Because each time I give in or let others make a decision for me, I lose a little piece of who I am.

Imagine trying to do just your daily chores. Things like showering, washing dishes, reading the paper, folding laundry, stirring a pot of sauce. No big deal, right? Now try it wearing 50 pounds and with your dominant arm tied behind your back. Not so easy. Oh you may get it done but how tired are you? How much pain are you in? Do you feel good about the job you did? Who had to help you? How did you get that pot of sauce off the stove with one arm? How does the laundry look after folding? Oh but wait, you must also care for 3 kids, pets, clean your home, grocery shop, go to the bank, tend the garden, prepare dinner and follow a recipe. See where I'm going with this?

There is a spoon theory that I like to tell people about. While the woman who wrote it has Lupus and not Lyme disease-it's a great analogy.

I am hoping the Lyme specialist can help. I'm desperately out of spoons.


Melissa R said...

I hope the visit to the specialist is a profitable one. I'm sure it will be at least comforting to finally see a dr who is on the same page as you are.
Here's to more spoons being in your future.

Aisha said...

Bev... the story is a great analogy...thank you for sharing. FYI - sometimes i have extra "spoons" and would love to share them with you.

The Mom said...

More spoons are always welcome!