Chapter 2, In Which our Health Care System Shines

This picture was taken 2 1/2 weeks ago, which was when my pain started. Mark and I keep ibuprofen in the glove box of each car for emergencies. I woke up with a little headache, but though I had just slept funny. We went off apple picking. It was an oppressively sunny day, hot in the sun, not so bad in the shade. Apple trees, primed for picking apples, don't provide much shade. We bagged a bushel of apples.

I took the ibuprofen on the way home. It took the edge off. The pain was on the left side of my head, behind my ear. When we got home, I separated the big from the small apples - big for drying and apple butter making and small for eating. I took them to the basement, the kids and I headed to my parents for the weekend. Mark was on 12-plus hour shifts and needed his sleep. Those apples are still unprocessed.

I woke up Saturday morning with a headache, but the bed in my parent's spare room is so old and uncomfortable, and the pillows so unwelcoming, I am used to waking up achy there. By the second morning, however, I knew there was a problem. I borrowed the neck pillow I bought my mother for her birthday, heated it the microwave and got relief for a while. Mark went off duty Monday morning and we drove home just as my jaw was starting to ache.

Monday night, two Mondays ago now, I had such pain I thought it impossible to bear. Little did I know how much is possible to bear. I took prescription strength Motrin. By that Tuesday morning, after discussing it with close friends and my sister who had been through a root canal, I decided that was the problem. Searing, unrelenting pain. I searched for homeopathic or natural remedy advice, only to find the most sane said "drink whiskey until there is no more pain, and then keep drinking so the pain will not return." I called my dentist and scheduled an appointment for the next day at the same time that Small was to have his cavity filled, Medium was getting her teeth cleaned and Large was getting a cleaning and a retainer check.

I don't drink whiskey and it seemed like a whole lot of wine would only provide me with temporary relief at great cost, so I took a vicodin I had lying around from something or other. And Mark got me clove oil, which did nothing, and anbesol, which seemed to help. Armed with those two, I went to bed. Nothing but psychotic dreams, the mildest of which involved our poor birds leg falling off in my hands, the many others involved death and destruction of all of my loved ones. I forced myself to stay awake, and still had no relief from the pain.

The next afternoon, I counted the hours, we went to the dentist. We took up four chairs of a six or seven chair office. I begged them to remove my teeth. Not a tooth problem, not TMJ as I had in my college days. My dentist performed a very thorough exam and then decided it could be an infection of the bone behind my ear - he probed and prodded there and in my mouth. I had a lump behind my ear that felt warm and extended down to my neck. Or it could be a stress response.

Who doesn't have stress? I liked the stress answer, although a root canal would have meant an end to the pain. I immediately called Mark to give him the "good" news and then called my doctor's office to schedule a tuina massage and see if I could be squeezed in for acupuncture. Thursday morning, massage. Later a cancellation gave me an acupuncture appointment. The dentist told me to take three ibuprofen and two acetaminophen at the same time - same thing my sister told me. That provided relief for a half hour or so at a time. The rest of the time I had radiating, agonizing pain - throbbing and stabbing.

Thursday. By the time the doctor saw me - I hadn't taken the pain stuff because I wanted to be able to describe it - I was in tears. I've spoken to her about my life long hopes and dreams, my constant struggle with my weight, my poor Small's life-inhibiting eczema, my other children's allergies. I've never cried. I had the massage, which took the edge off and then the accupuncture. I felt OK enough afterwards to run an errand. And then I spent the rest of the day on the couch with heat packs on.

In the midst of this, Mark's beloved Uncle Bill died in Wisconsin. Although he was 95 and had some ailments, it was a surprise to us all. We dropped everything - including my Roots&Shoots group, some community commitments and other dates - to get up to Wisconsin and support his remaining children, their children and the rest of our family.

That Friday morning I was up at 4 or so with my pain. It really is beyond words - soaring from the back of my jaw outwards, pulsating, hot, sharp and pointy. I've shattered an ankle and had a 9 1/2 pound baby without an epidural - neither of those compare to this pain. I thought there was no way I could make the trip. And then in the next instant I realized there was no way I couldn't. I couldn't trust myself home alone not to just kill myself. It was suicidal thought provoking pain. With no end in sight.

My doctor put me on the first antibiotic when I called on our way to the funeral, which helped take the edge off. By Saturday and Sunday, I had a full hour or two with minimal pain. I also had much distraction with family and a beautiful funeral service. But I also napped, took my pain combo more frequently than advised and applied heat whenever we were back at the room.

By Monday I called again my doctor to say the pain was increasing after a break. My doctor asked me to see an ENT, who provided me with two diagnoses different from mastoiditis, without even examining me. He walked into the room behind me and said "It's not mastoiditis, who told you it was that?" His first words. Then he pronounced it TMJ. When I protested that I had TMJ in the past, it only confirmed his diagnosis. I said I didn't grind my teeth and that the pain was no where comparable. He said I had to go on a two week course of ibuprofen to reduce the inflammation, or it could be Trigeminal neuralgia (Tic Doloureux) , but that he couldn't know for two weeks. Incredulously, I asked him if he expected me to go through two more weeks of this pain. He, literally, patted me on the shoulder and said I was grinding my teeth at night and needed a mouth guard.

Went home, scheduled another dentist appointment. My doctor called, I told her what transpired at the ENT, she prescribed me a stronger antibiotic. The man hadn't even given me a CT scan, which is a bit surprising, as it would have been covered by insurance. None of my symptoms matched with TMJ or Tic Doloreux. The second antibiotic took more pain away. My dentist confirmed I have no evidence of grinding my teeth and none of the hallmarks of TMJ.

It's been 6 days on that antibiotic. I still have several hours of pain a day, but they are spread out. I still have the lump behind my ear, cannot have anything too hot or too cold. I went through ten days of constant, tormenting, suicidal pain and lived to see the other side. Tomorrow I will call to see if we should switch antibiotics again to knock it out completely.

I've learned that our health care system is not about keeping the insured well. It's about passing the buck, making snap decisions and trying to fit round pegs into square holes. My own doctor is outside the health care system. She's out of network, out of pocket. She schedules 45 minute appointments with her patients and regularly runs behind. I'm lucky to have her. Broke, but lucky.