June 3, 2009 at 11:05 am (my story, symptoms, treatment)
Tags: antibiotics, fatigue, headache, healing, hyperthyroid, progress, stats, summary, visualization
I have entered another two month’s worth of numbers into my stats program and analyzed them. Of note is the fact that I was apparently hyperthyroid in Feb/March (and maybe before that) but went into remission in April. I’m gaining back my weight now, which apparently was caused at least partly by that.
I’ve created a new way of visualizing my data. The next image summarizes major symptoms since symptom onset (Fall ‘06) through August ‘08. Major events (such as the mold bloom) are marked at the bottom.
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May 20, 2009 at 9:32 pm (my-son, thoughts)
Tags: family, thoughts
I’ve been trying to think of the right way to say thank you to my mother for over two weeks now (ever since I realized mother’s day was coming up :). But it was only recently that I finally realized what I want to do. This post is for her.
Let me start by describing some of the things she and my dad have done for me this year. Perhaps the most important, to me, is the fact that they seem to have cured my children of a series of immune dysfunction. The children started having colds that they could not lick, ear infections, and even a sinus infection once, the same year that I became symptomatic. For many months of each year they were sick more days than they were healthy. Doctors all told me not to worry, they were in the range of normal. I of course continually fought with the fear that they had Lyme disease like me. My mother felt that our basement smelt moldy, and offered to buy us a device she had found, called a Wave/Humidex. I was skeptical, but she insisted (and paid) so I had it installed. The same month it was installed, my children went back to normal (this was October) and they have been fine ever since. My interpretation is that the mold bloom we had got all of us sick, and in their case, continued exposure to mold kept them symptomatic up until this device was installed. Perhaps it gave me a boost too.
Then my mother-in-law developed extreme pain severe enough to put her in the emergency room. Five days later, the hospital was still flumoxed. My mother suggested a fairly obscure possibility that she was familiar with because it sometimes affects pregnant women. She also knew a diagnostic test for it. No one here had heard of the test, and they mostly ignored the suggestion … but in the end, with no other ideas, they tried the test (walking backwards relieved her pain) and ended up giving the diagnosis my mom had suggested days before. Thanks to her help, my mother-in-law left the hospital with the correct support in terms of physical therapists. Read the rest of this entry »
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May 12, 2009 at 10:16 am (symptoms, thoughts)
Tags: flare-up, headache, thoughts
The last two days have been trying. Yesterday, a flare up started while I was at work and quickly got so bad that I could not keep my eyes open. Luckily I was already sitting on the comfortable couch of a good friend at the time. I was able to enter that state of waking sleep that my body demands at times like that without qualms. As things slowly improved, I asked for some soup and we propped me up and ate lunch together. When I had to leave for an off campus doctor’s appointment (something I couldn’t cancel) he found a nice piece of wood and drilled a hole in it and presto! I had a walking stick. Another friend gave me a ride to the doctor’s building, and the walking stick helped me get around where the car couldn’t.
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May 6, 2009 at 1:28 pm (thoughts)
Tags: resources, technology, thoughts
Having Lyme disease is a debilitating experience, on that many of us agree. Many of us also believe passionately that it is possible to improve our lot or even cure ourselves. As a result, we often focus much of our energy on finding the right doctor, the right medication, the right path forward. I certainly have. The rest of my energy typically goes toward getting through each day and in fulfilling and finding joy in my obligations at home and at work.
What I failed to realize for far too long is that there is something else worthy of my attention that can also help me to improve, to get through each day, to manage my situation. I should have realized long ago … that there are tools for getting through tough moments, saving energy, and otherwise assisting myself through the days. Read the rest of this entry »
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April 27, 2009 at 7:13 am (research)
Tags: internet research
Having Lyme Disease has been a life changing experience for me, something I am sure I am not alone in. For me, this has meant many personal changes such as doing a better job of prioritizing those things that are central to my quality of life regardless of how I feel, managing stress, and sleeping more. It has also meant changes at work — specifically, I have begun to think about how I can leverage my work to improve our understanding of Lyme Disease. Now, I am not a doctor or microbioligist, so I cannot easily contribute some of the things I most wish for — research into the lifecycle of this disease, the best ways to kill it and so on. But as technologist, there are things I can contribute to understanding and supporting the patient experience.
My work in this area is just beginning, and has been facilitated by some of the readers of this blog (thank you!). I have been given the opportunity to talk about some of what we are doing. I am going to be speaking at the Greater New York Lyme Neuroborreliosis Support Group on Saturday, May 2nd, at 12:00. The location is the NYU Langone Medical Center, NY, Auditorium B 550 First Avenue, New York NY.
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April 10, 2009 at 8:57 pm (symptoms)
Tags: flare-up, nausea
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. Read the rest of this entry »
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March 28, 2009 at 8:50 pm (my story, symptoms)
Tags: antibiotics, fatigue, headaches, healing, neck, progress, stats, summary, visualization
I expect this will become an (approximately) monthly post as long as I am still in treatment. I have entered another month’s worth of numbers into my stats program and analyzed them. This month is of note because I switched meds half way through –Penicillin was begun March 13th. At that time, Zithromax, Mepron, and Ceftin were stopped. I also lost 12 lbs sometime between when I last weighed myself (maybe over christmas?) and now, probably due in part to Ceftin causing me to have about 4 bowel movements a day.
The news continues to be good. The charts below illustrate the change in various symptoms from last month to this (click on them to see close ups)
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March 25, 2009 at 7:13 pm (thoughts)
Tags: feelings, thoughts
Today was one of many days when I leaned outward for support and found many arms and hearts ready to receive me. I want to acknowledge how much of a difference they have made in my life and my experience of Lyme disease. For example, earlier today I was trying to work on a paper and a headache struck. I felt tired and ready to give up. And then I thought, maybe I just need someone to remind me of how and why I am strong. I talked to a friend on instant message, asked for help, and they freely gave of their time and support.
So I want to take a minute to step back and write a letter of thanks. It will do me good and maybe some of the people who deserve it will read this. Read the rest of this entry »
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March 12, 2009 at 8:16 pm (symptoms)
Tags: improvement
I did not realize how important it would be when I started, but for over a year now I’ve been keeping a daily diary of how I felt. At first it was fairly vague and subjective — overall wellbeing, whether I napped, sometimes a symptom that particularly stood out (such as headache or back pain). About 7 months ago, I met another Lyme patient who also tracked her symptoms, and she shared the chart she used with me. I’ve been using it ever since to track about 40 possible symptoms, only missing about 3 days a month. It takes 1 or 2 minutes a night to fill out. I show it to my doctor who sometimes notes trends (symptoms I had all month). I look at it when I’m asked to remember how I felt in the last week and my memory fails me. I sometimes stare at a month’s worth of X and / marks hoping to see a pattern….
 Number of pain related symptoms per day decreases over time |
 Number of nerve related symptoms per day decreases over time |
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March 4, 2009 at 9:29 am (thoughts)
Tags: activism, thoughts
People with disabilities are a unique minority, a group that any of us can join at any time. I first identified with the group as a graduate student in the 90s when my hands were so non-functional that I had trouble doing many basic things … and no one could tell me if/when I would improve. Thanks to the advocacy of many individuals with disabilities, the Americans with Disabilities Act, (and related legislation) has set accessibility standards [1], and I soon learned, for example, to press the automated door-opening button at the front of my university building.
I will never forget the day that button failed me: A stranger became very angry on my behalf, opened the door, and went on to complain to the building manager. I was shocked, upset to think of myself in the terms he obviously did. I had an invisible impairment that, at the time, some people did not believe existed (echoes of the future!). Although I was high functioning, it had eliminated my ability to play the viola (a beloved hobby) and, from the perspective of a graduate student in Computer Science, seemed to make my career of choice next to impossible.
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