symptoms, thoughts

Relapse #n

Or maybe I should call this YAR (yet another relapse). Who’s counting, anyway? This one (maybe) was triggered by international travel and possibly stress. I’m about a week in, and as usual it’s both new and the same. Started with night sweats (while still on the trip), transitioned to nausea (new) and dizziness and now some pain as well (headaches, back and shoulders, etc). Not to mention the fatigue, sometimes just putting my own boots on gets me out of breath (those zippers!).

As usual, I find myself trying to make something new of this, because I have to do something. In the past I’ve developed new treatment plans, explored disability accomodations, and explored new doctors. This time around … I went shopping for canes (I had tossed my old one in a fit of hope and because it was falling apart). I’m heading to a conference at the end of April, and I’ve always found “seat canes” to be particularly helpful in that sort of setting, so I invested in a much nicer one than last time around. It arrives Monday, and I hope it will be as nice as it looks online! I’m using a hacked together cane at work right now (an old broomstick with rubber bands so it doesn’t slip!) so I also invested in a very simple wooden cane to replace the broomstick.

Really though, I want something more satisfying to do than shop for canes or try to sleep through it. Lying here in my office (in my lovely zero-gravity reclining chair; another investment in comfort when ill) a few minutes ago I tossed around feeling sorry for myself and even tried to work up to some tears or a good primal scream, but really it just didn’t feel right. It wasn’t going to change anything, after all.  Then I thought about working, but I guess I need a better project in my line up because none of my current ones were appealing enough to pull me out of the haze of pain I was in. So here I am writing a blog post instead (and it is helping :).  Continue reading “Relapse #n”

symptoms

Flares

My “bad periods” are becoming a regular companion in my experience of Lyme disease. I don’t mean the overarching up and down of my fatigue, headaches, and other symptoms, but the specific moments when I suddenly realize that something is wrong and my body’s demands overwhelm anything else.

At this point they’ve become so common that I’ve named them flares… the experience of each is unique and as a group they are becoming increasingly well defined… so I thought it might be worth documenting what I’m experiencing. Continue reading “Flares”

symptoms, thoughts

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

symptoms

Or am I?

Ironic considering my last post, but I’m starting to wonder if I’m really in the safe zone, or even have a handle on exactly what this illness is about. For the last two days I’ve been feeling much worse. My lymph nodes have begun to show signs of swelling again, and most importantly my fatigue and headaches are much worse. Both of the last two days I’ve felt nauseous and in need of a nap by as early as 9:15am. I’ve wanted another nap by afternoon, and had ongoing headaches in the afternoon to boot. I feel as if biking to school with my son exhausted me for the whole day (though I haven’t been keeping up with my bike riding, so I could also be losing stamina from that). None of this matches my picture of what should be happening by now, and I will admit I am disappointed and frustrated that it is happening. I have gotten about 7-8 hours a night of sleep for the last few days, sometimes interrupted, so that be part of the problem, but if it is then the safe zone is a lot narrower than I thought.

my story, symptoms, treatment

Beginning treatment — oral doxycycline and then IV ceftriaxon

It took a week for us to decide which doctors to see and make appointments, and another week before I could actually see the doctors (partly because I was going out of town for my only trip since deciding to cut out travel and focus on healing, an important work trip).

I left town on Wednesday 11/7/07 not having yet decided on a treatment option and having only seen one doctor, the one who encouraged me to go on antibiotics for an unknown length of time and gave me a 4 month prescription. My husband and I had decided to wait until we got a second opinion before deciding whether to follow his advice. However, I was becoming more and more concerned about my symptoms, which included the beginning of pain in my knees (we had been amazed to see that I had bags of fluid the size of baseballs behind each knee when visiting the doctor) and increasing clumsiness.

I arranged to fill a month of the prescription (oral doxycyclin, 200mg) at the last minute and picked it up at a pharmacy near my destination. I began taking it immediately. The next day I continued to feel worse (jerky movements, clumsiness, fatigue, and, thanks to the antibiotics, extreme nausea at times). However I woke up the following day without back pain. It wasn’t until the pain went away that I realized just how constantly painful my back had been. Unfortunately the relief only lasted a few hours, but occasional pain free hours have continued to occur ever since.

After returning and seeing the local infectious disease experts (the other two doctors), my husband and I decided to switch to IV antibiotics (ceftriaxone, also called rocephin) which we began on Tuesday, 11/13/07 after my PIC line was installed. The clumsiness, etc made us want the strongest possible treatment. This continued for 6 weeks, ending on 12/24/07.

During this same period, I took sacromyces (shown to help the gut flora survive antibiotics, though who knows how effective it is for treatment this strong) and ate yogurt regularly. I also tried to avoid sugar in my diet to help reduce the chance of a yeast infection, and generally ate lots of whole grains. I also continued to receive regular massages.

Finally, I began a daily diary of my symptoms so that I could give better information to my physicians and better track changes. My hope is that this will provide some objective evidence of improvement (or lack there-of). For example, looking back over how many hours I’m sleeping may be a better measure of fatigue than my subjective estimates, which are strongly effected by how optimistic/pessimistic I’m feeling about the situation.