It’s been a year. A whole year since I’ve been able to stay awake for an entire day and have energy to do the things I want to do. An entire year since I had a day entirely free of pain or unexplained numbness. A year since I’ve been able to enjoy travel. A full year since I got so horribly, horribly sick. It’s not the kind of anniversary I would have hoped to be celebrating… well, ever.
It’s also been a year of learning for me. A year ago I couldn’t have told you that the nervous system could wreak so much havoc with a person. I didn’t know all that much about the different types of diabetes or the causes of the diseases. I didn’t know more about cellular mitochondria than the basic fact that they are the powerhouse of the cell. I didn’t know how the various systems in the body interact and interfere with each other. Most of all, I didn’t know just how much medical information is available on the internet. For the record, it’s a lot.
I’ve tried to take stock of what progress my doctor and I have made in determining both what is going wrong with me and why. Although I tend to feel like I’ve gotten nowhere, I realized recently that we know a lot more now than I would have guessed. For example, we re-diagnosed my “asthma” as a heart condition. While it hasn’t exactly stopped the symptoms, the knowledge of why I couldn’t breathe and why I had chest pain led to me treating it differently. I am taking a much lower dose of thyroid medication, which has reduced the heart palpitations that led to the backup of blood into my lungs. The condition certainly isn’t gone – just last night I sat for a few hours on my sofa, debating whether to wake up Michael and get him to take me to the Emergency Room for the ridiculous chest pain I was feeling. Still, it’s less pervasive. We also (very recently) came to understand that many of the hormonal imbalances I’ve had are actually being driven by the nervous system. The basic idea of neuroendocrinology is that the nervous system senses chemical imbalances in the body and corrects them as necessary. All of the weird adrenal insufficiency, hypoglycemia, and deficiencies in serotonin and dopamine are more than likely simply about the nervous system, the hormonal thermostat, being on the fritz. We’re still working on exactly why this is happening to me.
I’ve learned a lot about how medicine works this year. A lot of people get frustrated and even angry when they see a doctor and don’t get diagnosed right away, but I have learned that this is a very foolish way to behave. The problem is, many diseases look alike, and even if you can identify what the disease is, there are tons of things that could cause it. It takes time, patience, and persistence to accurately answer these questions, especially if what ails you isn’t common. Let’s just take the example of my fatigue – there could be so many causes. It could be that I’m not sleeping enough or getting poor quality sleep (and if the sleep is poor quality, it could be that I am waking up repeatedly or not achieving deep sleep). It could be that I’m not making energy. It could be that I have a hidden infection that is taking energy from me. It could be that I’m not getting the proper fuel (like oxygen or glucose) to my brain. It could be more than one of these things, or none of them at all. The diagnostic process is long and tedious.
I recently tried a new therapy for diagnostic reasons, and in the future I will attempt to use it as a treatment. My doctor spent a weekend at much higher altitude than we currently live at, and he had symptoms that resembled mine. He said that he felt weak and he couldn’t focus, and realized that his feeling matched my description of what was happening with me. If he felt that way because of oxygen deprivation, then maybe that could be at least part of my problem. He sent me to try mild hyperbaric therapy. Basically, I get zipped up into this tube and oxygen is pumped in under pressure. I think it puts me at roughly 1.5 atmospheres. I just sit there for an hour, doing whatever I want. At the first session, I had a very interesting thing happen. At some point, I could feel my heart racing (a phenomenon that happens all too regularly these days). I placed the pulse oximeter (a device that measures your pulse and oxygen concentration) on my finger and had a startling result: despite being under pressure, my blood oxygen dropped to about 90% and my heart rate went up to about 127. Mind you, I couldn’t really do much to raise my heart rate in that tube, and the pressure should have been keeping my blood oxygen level up to 99% or above. I went back for a second session because I noted that right after my treatment, I was overtly hypoglycemic. My doctor and I thought that if we were pushing oxygen into my cells, maybe they were grabbing the available glucose and trying to actually make energy. I tested my blood sugar, oxygen and heart rate during my second visit, and had odd results. I stayed hypoglycemic for the first half of the treatment, but then during the second half, my blood sugar started to rise along with my heart rate. In fact, my blood sugar kept rising dramatically until about two hours later when I finally stopped to eat, at which point it started to go down. This is the clue that told my doctor that my blood sugar wasn’t being regulated by what I ate, but rather the nervous system. Since that discovery, my doctor and I have been trying various supplements that should both raise my blood sugar and reduce neurological inflammation. So far, I’ve had very little luck, but at least I know what I should be treating.
I have heard a quote saying something like “It is better to light a candle than to curse the darkness.” I’ve done my share of both in my situation. I light one candle, and it goes out, frustrating me to no end. I curse the darkness while I search for and light the next candle, only to have to repeat the process when the next candle burns out. It is only the fact that I have good friends who have advised and encouraged me this whole time that has kept me looking for the next candle. I used to think I was just being a big baby for not being able to handle what I’m going through, but I’ve learned over the course of my illness that most people wouldn’t have been able to handle things as I have. While I don’t claim to have been a good sport about the whole thing, I didn’t just sit down and give up. And believe me, I’ve wanted to. I tried to. I still want to quit. I just don’t know how.
The fact that I have been sick for a year has triggered a need for me to reevaluate my life. I have to figure out what I want to do now, given that my prospects of getting “normal” are bleak. The hardest thing I’ve had to do is reassess my value as a human being. A friend of mine was recently in school to become a teacher, and she told me something interesting she learned about where people get their self-esteem. Most people get it from their looks. It is rare to get your self-esteem from your accomplishments. I’ve never thought myself attractive by any means, so I am one of the rare people who gets my feelings of self-worth from the things I do. This has been devastating of late, given my inability to accomplish things. I’ve realized that only way I’m ever going to feel like I have a right to exist on this earth is if I can make a valuable contribution. My therapist and even my doctor have tried to convince me that I don’t have to do something to be valuable – that I am inherently so. I don’t believe them. I feel like a waste of resources. I can’t work at a regular job and earn an income, so all I do is spend the money my husband makes on health care for myself. It’s by no means all of the money he makes, and he is happy to spend the money, but I feel the influence of the American culture. As far as we want to think we’ve come, the truth is much of society doesn’t see women as valuable if they don’t either earn an income or raise children – or preferably both. It’s easy to say, “No, I don’t think that way…. no one thinks that…” but I promise, they do. Recall my interaction with another juror at jury duty. I can also promise you, I judge myself even more harshly than those around me. I get frustrated that I can’t keep my house as clean as I would like. My therapist suggested that maybe I should hire some help, even for just one day a week or maybe once a month. It’s just that I feel so guilty napping or just watching tv while I pay someone to do the housework that I should be capable of doing. I just know that who ever comes over is going to think, just like everyone else, “well, she doesn’t look sick.” This person will judge me as some spoiled, lazy suburban housewife. Or worse, I’ll judge myself that way.
I keep thinking that I should get a part-time job, anything to get a little socialization so the isolation of my condition doesn’t drive me off the deep-end. The inherent problem with that, I realized, is that the kinds of jobs I can get in my condition won’t be all that intellectually stimulating. As crazy as this seems, I actually like going to see my doctors, especially Dr. B, because we have discussions about really complex ideas, and he treats me like I’m intelligent. He’s even told me that he thought I should go into medicine because I showed such a great capacity for understanding the subject matter. The thing is, I have worked at minimum wage jobs before, and while I liked many of the people I worked with, I wasn’t treated well by people in charge. I was frequently spoken to as if I were stupid and uneducated. I was expected to adhere to arbitrary rules about looking busy and being somewhere during certain hours despite my ability to accomplish a lot in a relatively short time. I wasn’t asked to use my mind, but just expected to be a warm body. The hardest part was when I had good ideas but was shot down because it wasn’t my place. I even had a boss or two who actually told other people that, in essence, they felt threatened and wanted to make sure I didn’t advance. Not all of my jobs have been this oppressive, but especially in this bad economy where there are so many job seekers that employers view people as expendable, I don’t stand a chance. I need to feel valued, and I’m sure that being told that I am replaceable is not going to help my lack of self-worth.
I still have a lot to figure out. I keep hoping for that miracle cure, the good idea that either my doctor I will have that will just change the world for me. I still really want to work at a job where I feel valued. I’m not sure that either of those is possible, but for now, I’m going to keep looking for new candles. Now, where did I leave that match..?