Fighting to stay positive

Today has been difficult, no sign in sight of an end to the bad week. My back and neck hurt, my nerves feel hyper sensitive there and the only relief is when my husband touches my back. Also, my head has been hurting for hours, and neither a nap nor ibuprofin helped my head or back. In addition, my knees have been feeling arthritic today (a new symptom), my jaw is a little stiff, my ears are ringing and currently I’m nauseous. My abdomen’s still tender. And my mind’s been wandering again, making it difficult to sleep. At the same time, a friend who hadn’t seen me in a few months told my my complexion looks better, my face more filled out, than when she last saw me (pre-antibiotics). Her comments are an echo of what others have told me this week.

I know that hope and positive thinking have a very important role to play in healing.  Yet on days like today it’s very hard to keep my focus on that, or even on the positive comments, the negative looms so large: The fear that I will continue to get worse, that I made a mistake in which doctors I trusted, that I will have to revise my life again to a set of constraints I don’t want.  After hearing from this friend who hasn’t seen me recently, I am starting to believe that there is outward change to match the inward change I was feeling before this week. I’m glad I look better, yet even so I doubt it’s meaning. Is it a sign of healing, that I will get back to my old self, or just that the minimalistic lifestyle I currently subscribe to (little work early, bedtimes) is acceptable to my body?

Maybe I’m just setting my hopes on something too immediate, too specific. I don’t have faith any longer that I can map out my path to recovery. Maybe that’s ok. Instead, I will work toward the following: I will reach a day where I have moved beyond the pain and the worry.  I will reach a day when lyme is part of my history, a story I can tell my children, like RSI.

jen

Can’t move jaw, hearing problems

In late August in preparation for classes and a big paper deadline, I slept an average of about 5 and a half hours a night, with interruptions, for a 5 day period. This precipitated the worst downslide I had had yet.

First, starting on 8/27, my jaw pained worsened until I was completely unable to open or close my jaw and my lower jaw was jutting forward so far that my overbite had become an underbite. As it happened, I had scheduled an appointment with both my MD/homeopath (on 8/28) and PCP (on 8/29).  I believed that by now they would surely want to see me again (in the case of the PCP) and might think it was time to take more directed action to address what was wrong (i.e. run tests). The changes in my body were beginning to scare me. Still, I trusted my doctors. My MD/homeopath listened to my symptoms, and then asked me to open my mouth so she could look at my throat (I also had a cold again). She reacted with surprise when I couldn’t.

Second, my hearing had gotten truly bad, something both my husband and I noticed a few days before the doctors visits. Both she and my PCP sort of laughed it off when I reported this, and in fact my PCP said something like “aren’t you a little young to lose your hearing” and did not mention it again.

This should have been a reminder for me — for the second time since I became ill, one of my doctors was surprised to see how strongly my illness was affecting me. Description alone was not getting the message across. The first time (see my Feb 1, 2007 post), the extent of my fatigue was hidden by my daytime energy. The second time, the extent of my frozen jaw was not understood until, in front of the doctor, I could not open my mouth. Both times, even after they saw something closer to the truth, I left the office reassured that things would continued to work with my doctor to address my condition through naturopathic means. The hypothesis was that a combination of mold, lack of sleep and other stressors was acting on my body. I saw my PCP a few days later, and he assured me that my symptoms were most likely caused by a virus and would probably clear  up on their own and suggested I only come back if in a few months I was not better, or if I started to feel significantly worse. Even worse, serious symptoms such as hearing loss seemed to be overlooked if they did not fit the picture of the preferred diagnosis. In all fairness, none of my more serious symptoms were truly debilitating (I was still biking to work most days!) or if they were they cleared up quickly (the jaw was improving 24 hours later, seemingly responding well to the medication I was given, and completely better by 9/2).

Even so, if I could go back in time, it is at this point that I would whisper in my own ear: Your doctors don’t have a true picture of how you feel. They may be overlooking some of your symptoms. They’re investigating the possibility of a serious disease. And you yourself should never just wait out a combination of changes this diverse — hearing loss, frozen jaw, pain, fatigue, immune problems — this is a picture that should be taken seriously. Sadly, I was focused on things that seemed far more important at the time — meeting a paper deadline for a project I cared deeply about, and preparing for a difficult semester in which I would be teaching two classes, one of which was the most time consuming in our department.

A catalogue of typical symptoms

Over the course of the next two months, I had had a litany of symptoms. In the first ten days of June, I had what appeared to be two separate colds with runny nose and sore throat. At some point after that, I had flu-like symptoms twice within a 10 day period, and began to experience a strange pain in my jaw that felt sort of like the muscles were stiff. This happened once in mid-June and again in early August. My husband had at one point developed a stiff jaw due to an allergic reaction to antibiotics, and it went away fairly quickly. None of his doctors had seemed too worried about it, and consequently I didn’t worry too much about my jaw symptoms.

Also in early August, I developed a rash on the back of my neck that I now know is a typical and recognizable sign that someone may be infected with Lyme. My husband noticed and took a picture (below). It didn’t itch at all and I assumed I had just scratched myself, never looked at the picture and didn’t take it very seriously.

Rash

My back pain and swollen lymph nodes continued as well, and in early August I finally decided it was time to go back to my MD/homeopath for advice as I knew that ongoing swelling in the lymph nodes was not normal and 6+ months of that seemed like long enough that maybe I should be concerned.

She continued to try to help boost my immune system, but my general impression was that whatever was wrong was not serious enough to warrant testing and that with more rest and the right supplements my immune system would start working properly. As did my parents (both in medicine), my doctors seemed to think that it was my lifestyle and past issues such as my mold exposure that was causing my problems, as opposed to a serious illness.

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