The Autoimmune Disease Conference

I’m going to break this post up into a few days. It occurred to me while I was writing this thing that the conference was six hours long, and it’s a lot of information to impart in one blog post. If I break up the posts, I can also get the information out as I process it, so no one who has been anticipating this information has to wait too long or read too much in one sitting.

A few weekends ago, I went to a conference sponsored by the American Autoimmune Diseases Association. It was held at one of the hospitals where I go for my visits with specialists, the University of Colorado Anschutz Medical Campus. I was exposed to a lot of speakers who explained the immune system, how the immune system gets out of control, the new research on treatments, and how to work effectively with your doctor. All interesting stuff. Much of this information can be found on AARDA’s website.

The first speaker explained to us that he was there to explain and defend the immune system, given that all the other speakers were there to tell you how the immune system fails and ruins your life. I found a document from the NIH that explains this in great detail, but I will give you the short version given to me by the speaker.

The immune system can be broken down into three layers.

The innate immune system is the inflammatory response to an antigen (an antigen is anything foreign in the body, from viruses to pollen or even food). This is the first line of defense you have to fight off infectious agents, and it can be a good thing. It pretty much burns up any foreign body before it can become harmful.

The second immune response is the formation of antibodies. B-cells start in your bone marrow. They come into contact with an antigen, digest it, and replicate. They also call other complement factors such as neutrophils to help it destroy the invader. The B-cells then present the invader to T-cells. The T-cells then determine if the thing the B-cell found is indeed a foreign element (non-self) or if it belongs there (self). If the T-cell decides that the B-cell presented a non-self item, it signals the B-cell to mature and replicate as an antibody producing entity. There are other kinds of T-cells as well. Some T-cells activate other T-cells, and yet other T-cells call these little janitorial units called “phagocytes” to eat the antigens.

A third thing that happens in an infection is that antigens, especially viruses, embed themselves into self cells to hide from the rest of the immune system. The body has these cells called “Killer T-cells” which see bits of the invader peeking out of the self cells, then signals that cell to start the programmed cell death called “apoptosis“.

I’m sure this is an over-simplification, but the speaker only had twenty minutes to describe a complex chain of events, so this will suffice.

So, if we have this wonderfully complex system already built into our bodies, why do we need antibiotics? The speaker gave two reasons for this: a) sometimes viruses and bacteria replicate more quickly than our immune system can respond, thus overwhelming the body, and b) if we allow an infection to go on too long, you will create a lot of antibodies that, when they have finished the intended job, will get bored and look for something else to do. Bored antibodies can lead to autoimmune conditions.

I’m going to attempt to combine what I heard from each speaker in order to give you the most comprehensive view of the other subjects addressed at the conference. The above information was from only one speaker, but the stuff below is going to be mixed and matched.

What is an autoimmune disease? Basically, autoimmunity happens when something goes wrong with the immune system as described above. Your body starts to identify self cells as non-self, and all hell breaks loose. Your body’s immune system will attack a specific organ, often to the point where it interferes with the function of said organ. Autoimmune diseases are chronic and can be life threatening – they are the leading cause of death of female children and women up to the age of 64.

So then, what causes autoimmune disease? All autoimmune diseases have a common etiology (causation or origination), and it seems to be a combination of genetics and environment. Autoimmune diseases tend to cluster in families and in individuals. If you have a relative with an autoimmune disease, your chance of developing and autoimmune disease is increased. Likewise, if you already have an autoimmune disease, you are more likely to develop another one. The thing is, even if you have a genetic predisposition to develop autoimmune disease, you won’t actually get one unless you are exposed to an environmental trigger. Most of  the researchers say they don’t know what the triggers are, save for smoking. They all agreed that if you personally smoke or are exposed to second hand smoke, you are far more likely to trigger an autoimmune disease. I think though, that these researchers are missing the bigger picture. I think it’s really any process that causes oxidative stress in the body (the process that defines aging) faster than your body can repair it. This includes exposures to too many infectious agents (viruses and bacteria) or a long infection; allergens, especially food allergens (and even more especially, soy, gluten and corn); pollutants like smog and toxic waste; neurotoxins such as pesticides and heavy metals; certain pharmaceuticals (it is known that certain drugs can induce lupus); and excess hormones.

How common are autoimmune diseases? There are 80-100 identified autoimmune diseases, and there are 40 more chronic diseases suspected of having an autoimmune basis. Each one of these diseases is classified as a rare disease (affects fewer than 1 in 1,500 people); however, roughly 5-8% of Americans have an autoimmune disease. This is twice the number of people who have been diagnosed with cancer, and just as many as have heart disease. What’s more is that the prevalence, not just the awareness of autoimmune disease is increasing at an exponential rate. This suggests to me there is something serious going on in our ecosystem that so many people are getting so sick.

How are autoimmune diseases treated? They aren’t. I define treatment as getting to the source of the problem in order to prevent complications and perhaps even cure the condition. Currently, the symptoms of the autoimmune diseases are being treated according to which organ is affected, but no one is really addressing the cause of the diseases. Many patients are give immunosuppressant drugs (like corticosteroids or chemotherapy), but these drugs often have serious and even fatal side effects. If a hormone secreting organ is affected, you will be given replacement hormones (like insulin or thyroid hormone). The good news is that the researchers who spoke at the conference are aware of the lack of proper treatment, and they suggest that this is really the next frontier of autoimmune disease research.

I’ll end this post now, but I have a lot more to say in (hopefully) the near future. I will talk about who is likely to develop autoimmune disease and why, the obstacles of diagnosis, prevention of autoimmune diseases, and mechanisms of certain diseases that were specifically addressed (like type 1 diabetes, Rheumatoid Arthritis, and Multiple Sclerosis). Stay tuned!

A Dark Age

This is the first year I can honestly say I wasn’t excited about my birthday. It’s not about my age – I’m 31 this year. It’s not exciting, it isn’t a milestone, and I’m not the sort of person who feels a stigma with getting older. The number of years I’ve lived in no way reflects the quality of my life or my value to society. It’s just that this year, I feel a bit defeated.

I’ve taken to seeing birthdays as a time to assess my my previous goals and to set new ones. I wonder, am I where I wanted to be at this point? Am I on a path to somewhere else I’d like to be? What can I do to get there? Questions like that.

At this point, I’ve definitely achieved some lifetime goals I set long ago. I bought a house before I turned 30 (well, the bank mostly owns it, but I have a decent stake in my house and I get to do whatever I want with it). I work with animals, both wild and domestic. We are at a point where we don’t struggle financially. These are all very good things.

The goal that I have massively failed to achieve is good health. I had the opportunity to live with my maternal grandparents when I was in high school, and I learned then the importance of preventing disease. My grandparents were both victims of heart disease and diabetes. I say “were” because they are both dead. My paternal grandfather also died relatively young due to a lifetime of abusing his body with alcohol and cigarettes. I’m very good at learning from others’ examples, and I took from them that I must take care of myself if I want to have any quality of life as I age.

The catch is, I got sick anyway. I don’t think the lesson I should take is that it doesn’t matter, that I’m going to get sick no matter what I do, so I might as well be reckless. I certainly have taken the lesson that life isn’t fair and sometimes no matter how hard I try, there are some things that are not meant for me. Good health is one of them.

So now I’m trying to learn what my value is now that I am no longer productive. I’m trying to learn to live within some very strict confines of my chronic illness. I’m trying to learn how to overcome my limits and achieve something noteworthy anyway. To tell the truth, this is not an easy task, but I never back down from something because it isn’t easy.

So this year, I plan to set some very lofty goals. I’ll list them, in the order that they come to mind:

1. Stay on top of my health. I’m working long-distance with Dr B, and so long as he’s committed to the task, I will be, too. Before he left I asked if he understood what he was getting into, that I was likely to be sick the rest of my life and that while I may be able to stabilize, it’s unlikely that I will ever be cured. He is aware. I told him that if he did this with me, he was stuck with me for life. I asked if he was sure he really wanted that. He said he was sure, that he is happy to have me in his life. Good man. I feel that if someone else wants to invest that much in me, that the least I could do is put in my best effort.
2. Resume my old life with modifications for the realities of my new condition. I liked traveling before I was sick. I still like knitting. I love my kittens. I love making new friends. I enjoy giving of myself to others. I’m going to resume these things, understanding that I may not be able to do any of them quite as much or intensely as I used to. I will find a way.
3. Let go of my guilt. This might sound odd, but a lot of things I used to consider luxuries have become necessities to me. I have some bit of moral code that says I should not indulge myself when there are others who need things more than me. For example, I feel guilty getting massages on a regular basis when there are people who could use the money I spend there to eat. What I’ve started to realize is that by paying someone to perform this service for me, I am giving them the money they need to eat and a dignified means through which to obtain that money. It is a fair exchange, and getting something good out of it shouldn’t be something I’m ashamed of.
4. Make the fact that I got sick mean something. I’ve done a bit of research into the plight of people with chronic disease. I’ve learned that many of the other people in my boat have the same challenges I do. They are dismissed by doctors, they are made to feel worthless by society, and they just want to feel like they aren’t alone. At this point, I am not so far gone that I can’t do something to raise awareness of this situation. I can write books. Maybe I can do talks about it. I think the talks would be incredibly useful – to show up somewhere and look like I do, like I’m not sick, and tell people about the reality of my situation. Teach them that there are others just like me who they might be judging as lazy or mentally ill, when in reality they have a very real physical problem that just isn’t understood well.

I’m not sure how realistic any of the goals I’ve set are going to be. The important part is that I have goals, reasons to get out of bed in the morning (or afternoon, or evening, as the case may be).

This all sounds like a lot of work. I think I’m going to need a nap.

Good Enough

I flew out to Indiana for Gen Con yesterday. It’s a silly thing, but having a context in which to put all the weird phenomena I experience just makes it all more bearable for me. I’ve noticed before that I sleep very well on planes. Even when I’ve had a relatively good night’s rest before traveling, I pass out shortly after takeoff. Well, now I have an idea why. Two things happen when I fly – first, the reduced atmospheric pressure causes my blood pressure to rise so I can breathe better, and second, the oxygen concentration is lower, so less is being forced into my cells. I think that I just become hypoxic (low on oxygen, like when you’re drowning) when I fly and I actually can’t stay awake. I wonder if this will improve when I start hyperbaric therapy?

I cannot begin to describe how much knowing that I have a real physical problem has changed the world for me. Until I had a real answer, I truly thought that a lot of my symptoms were character flaws. I slept a lot – that must have meant I was lazy. I had random emotional breakdowns – that must have meant I was a spoiled baby. I stopped working when I was 23 – that must have meant I had no ambition. I went to doctors a lot, yet none had been able to find anything medically wrong with me – that must have meant I was just looking for attention and I was a spoiled suburban housewife. I know this seems harsh, but this is how I saw myself. While I might have come to this conclusion without any outside influence, everyday interactions with other people reinforced my negative self-image.

The absolute worst comment I heard (and I heard it frequently) is “You don’t look sick.” Like I was making it up. I think I understand why well-meaning people say this. I mentioned before that a friend told me that most people get their self-esteem from their looks. Now that I’ve had time to think about it, I realized that the well-meaning crowd was just trying to boost my self-esteem from the source that most people derive theirs from. That kind of comment did nothing for me, as my interpretation of self-worth is achievement based. The thing is, there is another crowd who tried to insist that my problems were psychosomatic. They didn’t believe I was really sick, and they thought that if I would just get off my lazy ass and get a job, or if I would just take an antidepressant, I’d feel a sense of purpose and maybe I wouldn’t be so sick anymore. Even some well-meaning people who believed my illness was real were operating under the notion that if I just had a positive attitude, I’d get better. I blame to woman who wrote “The Secret.” That book has to be one of the most damaging things you can inflict on a sick person, and it’s been very popular. I see why – I mean, if you can convince yourself that you are making up your illness, then it’s within your control to get rid of it by simply disbelieving it when you are ready to be well. I was given this book by a well-meaning person. What that book said to me is that I am to blame for my illness, that I was drawing illness to myself, and if I would just think positively I would draw health to myself. That is a load of crap. I suspect she would argue that magical/positive thinking is what brought me to my answer, but I’m telling you, I was not thinking positively at all when it finally came to me. I am asking anyone who reads this, please, please be careful about telling someone who is chronically ill with no medical explanation that they look good. At best, it offers no comfort, and at worst, it makes the person feel like you don’t believe her.

It was also the medical establishment that wrecked my self-image. Any doctor I saw more than just a few times had a file for me the size of an encyclopedia by the time we had to part ways. When something came up that seemed unusual, the doctors would run blood tests or take x-rays, and when they came back “normal” or only moderately off, the doctors would brush off my symptoms. They’d say things like “some people just have a lower energy level and need more sleep than others” or “your chest pain is probably muscular, nothing to worry about” or “how about I give you a prescription for an anti-depressant”. They seemed to miss the fact that these symptoms were new, not normal for me. The doctors who understood that the symptoms were new often attributed them to aging. I’m thirty now, and I was in my early to mid twenties when I was given this line. Aging was not the appropriate cause of my problems. The most painful was the offer for antidepressants. I felt like the doctors were telling me it was all in my head. Dr B was able to give me a better perspective on that approach. He said that antidepressants are often a doctor’s way of saying that he can’t handle your pain – the doctor wants to numb you and move on. This kind of treatment led me to believe that the doctors also thought I was making all this up. It is this type of experience that drives the chronically ill to suicide. I felt like I was a bad person, just trying to get attention, and the doctors seemed to agree with me. I felt like I didn’t deserve to live.

Another issue with the medical field was misinterpretation of my symptoms. Doctors seemed to get carried away with their own sense of superior medical knowledge, and they could not comprehend when something didn’t go as they expected. When I originally presented with breathing trouble, doctors went first to the most common cause: asthma. When I told them the drugs weren’t working, they tried to tell me that I wasn’t giving the drugs enough time. I figure if I’ve had enough time to develop bad side effects, I’ve had enough time to start getting the benefits of the drugs. The doctors hung on to the asthma diagnosis like their lives depended on it. There is a similar problem with my thyroid medication – when the dose is too high, it exacerbates my heart condition. I tried to argue that I don’t like how I feel when my dose is too high, and the numbers weren’t indicative of that. Since I have concurrent autoimmune disease and I present with fatigue, C and even my wonderful Dr B insisted that I needed to take enough of the hormone to make my numbers look good. C suggested that I wasn’t giving it enough time to improve my energy. I guess it did serve to prove that my thyroid is not the cause of my fatigue. One more interesting misinterpretation came from Dr B himself. He pays way more attention to me than I realized at first (a good thing, in the end, but it was unnerving when he revealed this fact). He would constantly talk to me about how I need to manage my stress because he saw physical signs that I hadn’t even noticed, like the fact that I often breathed heavily and sat in a hunched position. I eventually snapped and told him that I didn’t want to hear anymore about stress, that I handled stress just fine, thankyouverymuch. Rather than being signs of stress, these were actually signs of distress.

So the question becomes, “How on earth did I manage to persevere and actually get to a diagnosis in the face of the obstacles in front of me?” This is going to sound incredibly sappy, sentimental, and all sorts of other things I normally react to with nausea, but it was simply that someone believed me. More than one someone believed me, and these people saved my life. I’m not aiming to embarrass anyone here, but I’m going to call you out publicly. Vickie, whom I’ve known since high school, sent me to the practice where Dr B works when she realized what sort of distress I was in. My father, with whom I have had a very rough relationship, heard and recognized my symptoms from his own experience and pressed to me to have my heart looked at. Harriett, Lane, Bree and my therapist, J, regularly talked me through the rough patches when I really wanted to give up. Both of my Julies weren’t put off by my illness and made an effort to include me and make me feel like they still wanted to be around me. My husband Michael recognized that my illness was real and was supportive of my need to take care of myself, even when I was frustrated that I had to focus so much on my own health. Dr R (who does my adjustments) tattled on me when I wasn’t telling Dr B enough about when things started to go wrong (I was cranky about it at first, but now I’m grateful). Many of my other friends were able to supply other minor support roles throughout my life. Most important, though, is Dr B. He believed all of my symptoms were real, even when I stopped believing so myself. He was willing to admit when he didn’t know something, and he would call on others for help. He treated me as if I were intelligent, discussing his thought process and why we were trying each treatment in great detail. When the treatments had unexpected results, he didn’t assume that I was at fault. By recognizing my abilities and including me in the process, he helped me find my own answer, and he’s currently working on helping me prove it.

I realize as I write this that I have been guilty of some of the same sorts of interpretation errors that my doctors have succumbed to. In particular, I have misinterpreted my behavior, leading to a misdiagnosis of my character quality. In light of my new information, it’s a little harder to adhere to the definition of an attention-seeking, babyish, spoiled suburban housewife. By no means am I perfect, but I do want to write a more positive definition of myself. I’ll start with what I know:

1. I am generous. If I see an opportunity to help someone else, I will do it without hesitation. At the same time, I am not so foolish as to enable someone who will not help himself.
2. I am reliable. I have demonstrated more than once that I am the friend to call in the middle of the night when something bad has happened. What’s more, I am happy to be available for such times.
3. I am (at least to some degree) selfless. I actually enjoy taking care of others (credit to Dr B for pointing this out), whether it’s feeding friends at a dinner party or spending time with a friend who is dying of cancer. And we can’t forget the kittens.
4. I’m pretty intelligent. I don’t claim to be a rocket scientist, but come on, that medical diagnosis was not an easy catch.

If you have anything else you’d like to add, by all means, let me know. I’d welcome feedback about character flaws I need to work on as well.

Remember the book I decided to write? Well, now I have more direction and I know what I am going to do with it. It is the psychosocial aspect of chronic invisible diseases (especially those with no known cause or diagnosis) that I want to address. I want other people with chronic disease to know they aren’t alone. I want the general public to know how the things they say and do affect these sick people. Finally, I want doctors to take a lesson in trusting their patients.

Right now, I have a gaming convention to return to. As soon as I get home, though, I’ll get on that book thing.

In Detail

I slept for fourteen hours last night, with a break in the middle to feed the cats. I think that should be enough to get my act together and explain to you the incredibly complex disease that I have. Don’t worry if you don’t understand it all on the first read-through – it’s so complex that I listened to a three-hour lecture on the subject twice. I’m going to try to give it in layman’s terms, but if I use a medical term (I’ve been using them so long now that I might forget what is accepted as common English), please ask me to define what you don’t understand.

First, I will explain Myalgic Encephalomyelitis (ME). The term ME is often used interchangeably with Chronic Fatigue Syndrome (CFS), but they aren’t exactly the same thing. I mentioned in a previous post that CFS isn’t really a diagnosis, but rather the medical community’s admission that there is something mysterious wrong with a patient. Well, ME is a defined disease process, with recognized symptoms and origins of those symptoms. I’ve recently learned that there is a movement within the ME community to get rid of the term CFS. The reason is that CFS can describe myriad diseases, from depression to heart disease and many other defined disease processes. There is a common belief that CFS is a somatization disorder, which means that it is first a mental problem that manifests with real physical symptoms. Well, if you are a heart disease patient with CFS, treating you for depression isn’t going to make you better and it ignores the physical problem. Conversely, if you have depression, treating you for heart disease isn’t going to help either. I think of it as diagnosing a patient with “runny nose.” Well, the runny nose is a symptom, not a disease, and it could be caused by an infection or allergies (or other things, I suppose), and these defined diseases have very different treatments. With these limitations in mind, I understand the ME community’s concern about the terms being used interchangeably. I see another side of the coin, though. Without seeing these terms used synonymously, I would never have learned what my real disease is. I think that it might be more accurate to describe CFS as a category of separate, chronic diseases that look similar to one another but have different causes. The most helpful thing for me would have been to see a website that listed diseases that can cause CFS. I could have investigated each one of them individually and arrived at my answer more quickly.

I found that other countries did a better job of defining ME than the United States does (CFS is a definition used by our Centers for Disease Control. I am not certain that the CDC recognizes ME as a separate disease). I found the Canadian definition of ME to be a very accurate description of the symptoms I had that don’t even seem to be related to one another. Here’s my summary of the case definition in plain language:

1. Expending energy, whether mental or physical, leaves the patient more exhausted than is reasonable for the level of energy expended. Also, other symptoms worsen when the patient has exceeded his energetic limits.
2. The patient has all sorts of sleep disorders, from insomnia to hypersomnia (sleeping a lot), inability to sleep for a full night, trouble falling asleep, etc.
3. Pain is present at the neurological level, in the muscles and in the joints. There may also be headaches of new types or intensity.
4. The patient has trouble when receiving too much neurological stimulation. It can make him sensitive to noise or light and it can make him oversensitive to emotional stimulation. Also, the patient may have trouble with memory, concentration, disorientation, etc.
5. The patient will have at least one of the following subset of symptoms: a) disorders of the autonomic nervous system such as dysregulated blood pressure, irritable bowel syndrome, bladder dysfunction, and heart rhythm irregularities; b) neuroendocrine symptoms (meaning the interaction of the nervous system with hormones) such as inability to tolerate heat or cold, abnormal appetite, weight change, hypoglycemia, and emotional instability; and c) immune symptoms such as swollen lymph nodes, sore throat, flu-like symptoms, change in allergies, and hypersensitivity to medications.
6. The symptoms must persist at least six months. (I will note that the disease can be suspected sooner, and it makes sense to start treating right away so more symptoms don’t develop and the damage doesn’t become permanent. If it goes away before six months is up, it wasn’t ME, but the patient was still treated. Better safe than sorry.)

There are a lot of symptoms here, and I have had them all. They seem unrelated unless you understand just how the whole disease process works. The website for the Myalgic Encephalomyelitits Society of America is the best place I’ve found for getting a complete understanding of the disease. I will give you my simplified version here, in layman’s terms (to the best of my ability). If you want to understand the disease more completely than I am explaining it here, I suggest you explore the entire website I listed above.

To understand the disease process in its entirety, you have to follow the work of Dr. Paul Cheney. There is a link on the ME Society website to a three-hour presentation done by Dr. Cheney thoroughly explaining what I am going to try to simplify here.

First, you have to understand how the heart works. Basically, the heart relaxes and fills with blood, then it contracts, pushing blood through the circulatory system. Contrary to what you might expect, it takes more energy for the heart to relax than to contract. Think of this as if you have metal spring. It takes energy to pull the spring straight, but when you release it, the spring returns to its coiled (contracted) state. This is what is relevant for understanding my condition, but it is not the whole story. For a complete description about how the heart and circulatory system work, you can read this website.

The root cause of the ME, at least in my particular condition, is cardiomyopathy (heart muscle weakness). In traditional cardiomyopathy, there are problems in the systolic phase, or the contraction phase (generally structural problems in the heart, and sometimes blockages), so the heart doesn’t pump enough blood to the body. I don’t have that kind of cardiomyopathy. My cardiomyopathy is in the diastolic, or relaxation phase of the heart beat (and what’s more, my body is compensating for this heart malfunction). Due to a mitochondrial malfunction (which I think is too complex to explain here, but if someone wants me to do so I will be happy to write another post about that), the heart doesn’t have enough energy to suck the blood that was just oxygenated by the lungs back into the left ventricle (which is why this is called left-sided heart failure). In my case, some of that blood backs up into my lungs, making me cough. When heart failure leads to fluid being left in inappropriate places in the body, this is called congestive heart failure. The doctors thought this was asthma when I first presented with this phenomenon, but I was clever enough to realize that was the wrong diagnosis almost a year ago. I think (but I haven’t heard anyone say this yet) that when you start having trouble with congestive heart failure, your body compensates by decreasing blood volume to stop that from happening.

So, I’ve established that I have the heart failure. The next question is, how does it cause the symptoms of ME? Above all else, the body preserves blood pressure. I’m going to steal Dr. Cheney’s metaphor about using a garden hose to water your plants to explain what is happening here. Say you have the faucet your hose is connected to turned all the way up. The water from the hose can reach all the way to the back of your garden. All is well. Let’s say someone comes behind you (without your knowledge) and turns the water pressure down halfway. Now you can’t water your entire garden. So what do you do? You put your thumb over the end of your hose to increase the water pressure, and you can water the plants in the back again, but it will take longer to get the same volume of water to them. Well, the body does something similar. When your heart (the faucet in the metaphor) can’t put out the proper blood pressure, the body has to compensate somehow. The first response is for the body to access your adrenal response. It raises your adrenaline levels, which speeds up the heart, increases blood pressure and opens airways. The problem with keeping that up forever is that eventually, your adrenals will fatigue. When adrenal fatigue happens, your body has to compensate by, effectively, putting its thumb over the ends of the blood vessels and reducing the supply of blood to organs in reverse order of their necessity for survival. When this happens, you get the defined process by which ME occurs:

1. Skin and thyroid function – when you get too warm, your body’s thermostat (we’re going to call this thermostat the central nervous system – CNS for short – but the reality is the hypothalamus recognizes actual temperature change. It’s just that in the end, all of this is about the central nervous system, and I’m trying to make this simpler) responds by sending blood to the skin to offload heat. What happens when you no longer have enough blood volume (above and beyond what is directly needed to keep your vital organs working) to offload enough heat? Either you die, or you downregulate your metabolism (heat is a byproduct of metabolism). The body does this by downregulating thyroid receptors, making you hypothyroid. For a while before this happens, though, you might have trouble maintaining a constant body temperature and may even have low-grade fevers.
2. Muscles – The next thing to get under-fueled is the muscles. I think that if the mitochondrial defect in the heart is not limited to the heart, you might also have muscular dysfunction because of the metabolism problem. However, if you aren’t getting circulation to your muscles, lots of bad things happen. The muscles aren’t getting the oxygen they need to function, so they switch to an anaerobic (without oxygen) method of making energy that produces lactic acid. That’s what makes your muscles burn after an intense workout. Eventually, your muscles will waste away and you will be in constant pain. I think this explains why I can’t hold a chiropractic adjustment – the muscles that hold my spine in place are just too weak to do their job, so I get out of alignment quickly.
3. The liver and gut – when your reduced cardiac output gets really advanced, you start having digestive problems. Have you ever noticed that, after you eat a large meal, you get exhausted? There’s a reason for that – in order to digest your food, your body has to send blood to your digestive tract to provide the fuel it needs to do the work of digestion. The bigger the meal, the more blood needed. What if you don’t have the blood to spare? Well, your gut then releases a chemical called VEGF which dilates the capillaries and blood vessels nearby to encourage greater blood flow. An unfortunate side effect of the open capillaries is called “leaky gut syndrome.” Leaky gut syndrome is when metabolic waste products and partially digested food get out of your intestines and into your blood stream. Chaos ensues (I will elaborate in the next step). In addition, your liver doesn’t get the blood it needs to function either. You may have a perfectly functional liver, but if it can’t get the blood it needs to do it’s job, it will fail to detoxify your blood making you feel sick.
4. The brain – I am with Dr. Cheney in believing that the effects of the brain are more related to the toxicity coming from the gut than lack of blood flow (although I do think that blood flow to the brain might be a problem as well). The toxins from your gut get into your nervous system and dysregulate it. You can no longer control your blood sugar, your blood pressure, your body temperature, or even your hormone production. You can’t think, you can’t form memories, you might have seizures… I honestly think this may be related to what causes migraines in some folks. I’d be willing to bet that migraine sufferers could do a liver cleanse, then subsequently avoid foods like gluten, eggs, dairy, soy and other highly allergenic ingredients and they would have a reduction in symptoms.
5. The heart – By the time your circulation defect is hitting your heart, I think you are in serious trouble. Look at all the previous systems that had to be deprived of fuel first – when you’ve gotten down to sacrificing the vital organ you need to keep yourself alive, that’s an act of desperation. The clue you’ve gotten to this point is that your heart will have an arrhythmia. You’ll even have chest pain that feels like a heart attack. If you go to the cardiologist, he’ll probably find that your mitral valve has prolapsed (it won’t close properly). At this point, your diastolic cardiomyopathy can turn into classic systolic cardiomyopathy.
6. The lungs and kidneys – This is the final event that precedes death. Your lungs and kidneys shut down and you get toxic and die. That simply.

Here’s the cool thing, though – ME prevents you from getting too far along in stage five. Somehow, the body figures out that it can just cut your energy production, forcing you to rest and cut your demand for the energy it doesn’t have. The reason it does this is even more complex, and something I will only explain in more detail in another post if someone requests it of me. The short version of the problem is that there are two byproducts of ATP production (energy production) that can combine and become quite lethal – Nitric Oxide and Super Oxide. When they combine, they become Peroxynitrite, a potent free radical. It forms in a nanosecond and kills something in a picosecond. If you have tons of these Peroxynitrite molecules in your heart and you can’t reduce them to water and carbon dioxide fast enough (or if your heart cells are deprived of oxygen for too long), you will have cardiac cell death, which is what defines a heart attack.

So, how did I get into this situation in the first place, having a heart defect on the mitochondrial level. Well, the short answer is, I’m not sure and it almost doesn’t matter. Almost. It seems to be a combination of exposure to viruses, bacteria, toxins, allergens, and heavy metals. I think my problem started with an infection, probably when I was a very small child. The viruses that have the greatest affinity for the heart are in the Herpes family. No, I don’t necessarily mean genital or oral herpes. Chicken Pox and Mono are also in the Herpes family. I think about the fact that I caught Chicken Pox twice as a kid. That suggests to me that I never really fought it off well. The thing about Herpes viruses is that they live in your body forever once you get them, going through active and quiescent (inactive) phases. One way you fight this virus is with an enzyme called RNase-L. It chops up messenger RNA (mRNA) from the virus, keeping it from replicating. Mistakes happen in the body, and at some point it appears that the RNase-L starts to think that human mRNA is viral mRNA, so it chops that up, too. Eventually you get transcription errors that lead to mitochondrial malfunction. The significance of this is that I have to be careful about what infections I get because each time I get sick, I seem to get worse permanently.

So, that’s what happened. Complex, isn’t it? The next step is to get an official diagnosis from a medical doctor, because that can open up a few doors for me under the Americans with Disabilities Act. As much as I adore Dr B and owe him my life at this point (I will discuss this further in another post), he is a chiropractic doctor and his support of my self-diagnosis means nothing to those who enforce laws that will allow me to do such things as attend medical school in a modified manner (not having to go to class to hear lectures, taking exams when I feel well enough, that sort of thing).

All right, I’m back up and fighting. Look for more posts in the future about subjects like the psycho-social impact of the disease, the medical establishment’s role in keeping me from getting a diagnosis, and other related subjects. Just be patient – I’m sick, and it might take some time.

The Answer

After a lifetime of being sick, and after a year of being so acutely sick I could no longer function, I finally know what went wrong. A few days after my last post, I made what I thought was going to be one final effort to find any information on my health condition before I gave in and decided that I would always be sick and that there was nothing more I could do to help myself. I had reached the end of my rope. I think it’s best to keep private what reaching the end of my rope looked like, but suffice it to say that it was really, really sad. It was then, when I gave up, that the answer finally came.

What I have is compensated idiopathic diastolic cardiomyopathy which lead to condition called myalgic encephalomyelitis. It’s a mouthful, but basically, it means that I have diastolic heart failure, and my body has compensated for it by turning down its production of energy to help me survive said heart failure. In future posts I will describe what’s happening a little more thoroughly, although not completely. It’s not that I don’t think you will understand, it’s just that it took me a year to do all the research required and I only barely understand what happened myself. Also, my condition is only mostly understood – there’s still research to be done in the medical field.

This is a good news/bad news diagnosis. The bad news is, there is no cure. Diastolic heart dysfunction has only recently been detected and understood, so not only do many cardiologists not know about the condition, but there is no research yet on treatment.  The good news is, my symptoms can be managed, and perhaps I can get to the point where I barely notice the symptoms. I may have to lead a limited life, but not so limited as I do now. As I start treating the condition, I should make slow improvement. The catch is, it can take a year or more to know if what I am doing is changing my disease status.

I am very tired now, and I need to get some rest so I can start taking the next steps toward my recovery. I promise that soon I will write a series of posts describing what the disease is in a more thorough manner, how I got to the diagnosis, and what the future will look like.

It feels good to finally have the answer!

Setting Goals

Check this out – I’m posting again within a few days my last post. I don’t know what to think about this – maybe I’m getting some of that ambition back? It would be nice.

I’ll start with a short health update: I haven’t been able to experiment with the magic combination of supplements because, unfortunately, I got a cold. I can’t help but feel my physical response to getting a cold is exaggerated. I mean, for most people, they get a little stuffy, maybe a little tired, but they can function. When I get even a small cold, it just wipes me out. I forced myself to have a good time with my gaming group yesterday because I have so few interactions anymore with real people who aren’t doctors. Since I last posted, I also managed to do some research on nitric oxide, and I learned something hilarious – the supplement I’m taking seems to be the herbal equivalent of Viagra! No, the doctor isn’t crazy for prescribing that to me. Viagra was originally developed to help people with heart problems, basically by modulating the nitric oxide pathways in the body, thereby opening up blood vessels. The reason we know Viagra as a drug for erectile dysfunction is that the pharmaceutical companies found this to be a more profitable way to market the drug.

Today, I’m going to get back to the original topic of my blog, to some degree. I’ve been feeling that since I’m kind of trapped in my house, sentenced to doing low energy activities, I should use that for some practical purpose. I just hate feeling like I’m doing nothing, like I’m useless. I’ve got some goals related to knitting and outside activities, so I thought I’d share them, to make me more accountable. Here they are, more or less in the order I manage to think of them:

1. Write a book. I have no idea whether this book is just for me, for only close friends, or for the world, but I want to write a book on what it is like to live with a long-term, mysterious and invisible illness. I won’t know for whom I am writing the book until I’ve finished it because it is kind of personal, and I just don’t know what I want to share and with whom.
2. Finish all of my knitting and crochet WIPs. This has failed in the past, largely because I see something new I like, and I just toss the old stuff aside like dirty laundry. I know that by denying myself the freedom to cast on something new I only manage to trigger a rebellion and I suddenly feel a burning need to cast on a ton of new projects, so I’m going to set guidelines like, “I have to finish three projects already in progress before I cast on a new one.” Of course, then the new one will soon become one of these old projects, so I am really just making the problem worse by adding to it, but at least I am taking a few steps forward as well. And who knows, maybe being trapped into this disciplined yarn crafting might just be the trigger my body needs to get better. I will gladly discard my newly instated rule if I have energy and can do other things that don’t involve sitting down. It would be a reward, in a sense. If I don’t get better, seeing that pile of half-finished projects get smaller would be a different kind of reward.
3. Do a wardrobe purge. This is a smaller project than the others, probably something that will take a day or two, but it’s something I really need to do. I’ve lived in parts of the country that have had relatively consistent weather since I was fifteen years old. First it was Hawai’i, then Florida, then San Francisco (I am using the city here rather than the state because SF really is different than the rest of California in general. They get seasons everywhere else in the Bay Area, but not so much in SF. Southern California has a consistent climate, too, but it’s warm, whereas SF is cold. Even in the summer.). Now I have to have clothes for multiple seasons, and some of them are worn out, some don’t fit anymore (due to weight loss), and some I just don’t like. The volume of clothing I need has become comparatively greater than before. I need to get rid of what I don’t wear, then supplement the areas of my wardrobe that are lacking. The latter part will be harder, since I really don’t have the energy for shopping trips that involve trying on clothes. The goal, though, is just to get rid of stuff. The replacing will come later.
4. Blog more often. This goal is a little vague, but I want to aim for once a week right now. I won’t get too hard on myself if I only manage every other week, though. I think that it might help me achieve my goals if I write down the progress I’ve made. Sometimes I feel like I’ve done nothing until I’ve made an accounting of it. Right now, I need to see that I’m not entirely useless for my self-esteem. I have none left after all this being sick business.
5. Spin a skein of yarn. Also a small goal, but I just haven’t spun anything in a long time, and I really want to. I got a lot of fiber for Christmas (Amazon.com allows you to add things from other websites to your wish list now, so I went to Etsy and added the pretty things I saw), my fiber storage is overflowing, and, well, it’s a way to get new yarn without having to go shopping for it. Plus, spinning is a very mild form of exercise (see how your calves feel the day after spinning for a few hours), and I really want to try to get exercise. I miss simply moving around.
6. Sort out my digital pictures. This is a medium-term project. I have hundreds, maybe thousands of pictures on my hard drives, and I want to do something with them. I’ll probably put quite a few on Facebook, I’ll print some to hang on my walls, maybe I’ll showcase pictures of kittens I had before I started keeping this blog… the idea is that I don’t know what the point is in having all these pictures if they are to remain unseen in a hard drive.

So, I’ve listed goals of varying time commitment and difficulty. I think that I might start with a smaller goal (like spinning a skein of yarn or the wardrobe purge) sooner so that I can get the accomplishment momentum going. The book, WIPs, pictures and blogging will be things that sort of happen in the background, perhaps concurrently, or perhaps I will focus on one of them at some point just to have the achievement. I will make regular updates about them, just to keep me on track.

There are more goals I have in mind, but making them something I have to commit to right now would simply be setting myself up for failure. There are things I want to do like finishing the painting in the house (there is still a lot of wall space left unpainted) and getting back to fostering, but my health limits those. It’s downright dangerous for me to get on a ladder, for example, because all it takes is one black-out and I’ve fallen and broken my neck. Of course, my over-arching goal is to get healthy, but I don’t think I have much control over that. Control that I haven’t already exerted, I mean. I go to the doctors regularly, and I take my supplements regularly, no matter how nasty they are (and let me tell you, some are quite powerful). I’m planning to see a new specialist in Los Angeles for a diagnostic procedure called non-cognitive biofeedback. Admittedly, this one seems a little… out there… but I’m at the point where I’m thinking anything is worth a shot. I cannot go on like this anymore.

So, for now, I’m focusing on what I can do. Modest goals.

Show Yourself

My disease finally came out of the shadows a bit, exposing a part of itself. I have no question now that it’s in my brain, in the nervous system. This revelation started with the latest supplement I was given by the neurologist.

The new supplement I am taking is supposed to balance Nitric Oxide in the body. I understand very little about this, about what balancing Nitric Oxide is supposed to do for me, but I will learn eventually. What I do understand is that having the right Nitric Oxide balance is supposed to reduce inflammation. That’s about the limit of what I know.

I was given the new supplement with instructions to increase the dose to my tolerance level. The neurologist explained that I would know I had reached my tolerance when I felt tingling in my extremities after taking the supplement. Well, that’s not what happened. I started with the baseline dose I was instructed to consume, and noticed that I had a short burst of energy about an hour after taking it. This felt promising. In fact, I was pretty excited about it because Michael had a business trip to Miami coming up, and I wanted to just spend some time lying in the sun, truly having a good time not overshadowed by generally feeling like crap. I did, after all, lose my summer to my mystery disease, and I felt like it would be nice to just have a few days of that summer back despite the snow and cold temperatures at home.  I added the new supplement slowly, knowing that I have a way of reacting poorly to new medications if I try to introduce them too quickly. By Friday, I started to increase the dose of the supplement as I was instructed to do. This is when the disease started to really show itself.

At first, my reaction was good, maybe too good. I had A LOT of energy. This was a good thing because I had to pack that night, and it was thrilling to think I might finally be able to get through one thing I had to do without it being a grueling task. Very quickly, though, the energy became too much. I visited the chiropractor who does my adjustments that morning, and I just couldn’t sit down in the waiting room. I just couldn’t stop talking either – not to the girls at the front desk, not to the doctor, not to anyone. I left the office, but had to return because I forgot to pick up a blood draw request from the other doctors I see at the same practice. After picking up the form, I went immediately to have the blood drawn. I was still in good shape.

After the blood draw, I got in my car to drive home. As I got on the highway, several things happened in quick succession. I was suddenly in tears despite a lack of provocation, and then I felt so fatigued that I thought I might have to pull over and nap so I could make it home (I only had maybe 10-15 minutes left of the trip). A moment later, my face started tingling along my right cheek and upper lip. This had happened to me before, during the first part of my health crash. But then, the right side of my face went slack, like I was having a stroke. The slackness went away quickly, but the numbness stayed until the following Tuesday.

I want to emphasize here that I DID NOT have a stroke. I looked up the signs of stroke after I got home, just in case, since there is a family history. In fact, I am providing a link here to information about how to recognize stroke, just as a bit of a public service.

While I knew what was happening was not a stroke, it became clear right then that the problem was indeed a neurological disorder. I’ve had more than one person suggest Bell’s Palsy to me, but from all the things I’ve read, it seems that Bell’s Palsy is limited to just the facial numbness and paralysis, and it’s a diagnosis of elimination. No, this is more. It affects my emotional stability and my fatigue level very profoundly at the same time. I plan to study the neurology textbook I invested in a while back, and of course, to bring this to the neurologist. I think that this will tell us at least where the infection is lurking.

I’ve said before that my illness is like an episode of House. We just have to provoke the illness to make it show itself, and only then can we treat it properly. At least, I hope there’s a treatment. Some attempts at provocation fail, and sometimes when we aren’t trying to do anything, we accidentally get a result.

While I am waiting for the elusive diagnosis, I can at least manage some of my symptoms now. The bad reaction I had was triggered by withdrawal from the supplement, not the addition of the supplement. That means, in the right dose, I can suppress a lot of the bad things that have been happening. I’ve noticed that on it’s own, the new supplement has no effect. At this point, I know I have to consume D-Ribose and caffeine at the same time to cause the energy increase and relief from inflammation. There is also another of my supplements, one that I only take twice a day, that enhances the effect of the new supplement. I’m going to have to experiment over the next few weeks to see exactly which one that is.

As tempting as it is, I am not going to get too excited over this development. The problem is that I’ve had things that helped before, but it didn’t take long for them to lose their effectiveness. Also, I’m just managing symptoms right now – maybe eventually there will be a cure, but depending on exactly what’s wrong, there may not be one. There are also undesirable side effects of the supplement – I can’t sleep well anymore. I wake up every hour at night. I’m trying to stop taking the supplement earlier in the day in order to avoid that effect, but when I’m not taking the supplement, the other symptoms return. I have to achieve a balance I can live with for now. At least it’s progress.

Coming up for Air

I feel like all the health stuff I’ve dealt with lately can be compared to drowning. I’ve been floating in this vast ocean of mysterious illness, looking desperately for wreckage of my former health (or at least, what there was of it), support from others, and whatever nutritional supplements I can find to cling to so that I don’t go under. I’m still dealing with profound fatigue and an uncontrollable sleep cycle. In the last few weeks, I developed severe headaches that just wouldn’t go away. I’m still always in pain. I think that I even caught a cold on top of all I’ve been dealing with.

There has been some good news, though – I’ve had two improvements. First the Neuro-Endocrinologist (another chiropractor), added CoQ10 and D-Ribose to my supplements, and they seem to have done something! My blood pressure is up now (usually in the 100/80 vicinity, but I’ll take it), but my resting heart rate has gone way up (a bad thing in the long run, I think). The muscles on the right side of my torso had lost a lot of muscle tone, and now they are improving slightly.  I still have trouble holding a chiropractic adjustment, but the adjustments do last just a little longer now. The second improvement has been in my attitude. For some reason, the thing inside my head that made me just want to be dead has vanished. Don’t get me wrong, I’m still easily pushed into a depressive episode, but I don’t constantly think about ending it all. It isn’t much, but I have to take what I can get.

In about 6 weeks, I will officially fit the definition of a person with Chronic Fatigue Syndrome. I thought to look this disease up when I had a physical a week and a half ago and it took me four days to recover from the minimal exercise they asked me to do. This condition was not recognized by the allopathic medical community until very recently, which makes me more than a little annoyed with our current state of the medical system.

My recent illness has had a purpose in my life – I’ve learned a lot about taking charge of my own health care. I thought I had been doing so for the last few years. You see, I was diagnosed with thyroid disease when I was in college. Since it’s autoimmune, I was informed that it would get worse over my lifetime. I accepted that. When I got out of college, an HMO doctor thought that since my thyroid levels were normal, I should be taken off the medications. I begged for a referral to an endocrinologist, and when I finally got that referral, I was a mess. Since then, I refused to let primary care physicians deal with my disease. Seems simple, right?

It turns out that it wasn’t so simple. I only saw doctors who were trained in the established test-based medicine culture. What this means is, as long as the patient’s lab values are in the “normal” ranges, the doctor has met the standard of care and can declare you “just fine.” Only, I haven’t been “just fine.” I quit college after my bachelor’s degree even though I fully intended to stay through vet school, and I had to quit working for pay when I was in my early 20s because I was so tired all the time. That doesn’t sound normal to me. I told my doctors just how many hours of sleep I needed, and even the good ones said “some people just need more sleep,” and they left it at that. No one ever bothered to look into possible underlying causes for my excessive need for sleep at such a young age. The even odder part (to me, at least) is that no one ever thought to treat the underlying immune-system disorder that was causing the whole thyroid dysfunction. I wasn’t told it could be treated.

It wasn’t until I discovered chiropractic medicine that I actually felt “good” again. Granted, it was short lived, but I truly believe that the fact that I was overdosed on my thyroid medication precipitated my current sad state of health. The thing is, the chiropractic doctors actually treat based on how the patient feels, not just how the lab tests look. This is how medicine used to be practiced before lab testing became all the rage. Don’t get me wrong, the chiropractors still do extensive testing to see what may be causing the symptoms, but being within the “normal lab range” isn’t what makes them think I’m healthy. These doctors see me on a regular basis, and they know I’m not ok. You know what it is the most amazing part about them? They actually listen to me, taking as much time as I need to hear everything I had to say. I was at the office for four hours one day, and at least half of that time was spent dealing with my health questions. When’s the last time an MD did that for me? Never.

I still have some ties to the MD practitioners, though. The chiropractors aren’t able to prescribe medications, and like it or not, I still need to supplement my thyroid hormones. I went to a new MD endocrinologist (since I’m not seeing the guy whose nurse treated me like and idiot) to get that part managed, but instead I learned another hard lesson. I was up front with the guy about why I left the last specialist. I explained that working with the chiropractors had changed my need for thyroid medication, and that I ended up overdosed. As soon as I said “chiropractor” the doctor stopped listening. He told me that people only go to those guys when they are desperate and that nothing they did actually affected the patients’ health. I explained that they found out I was allergic to gluten, and getting that out of my diet had significantly reduced the amount of inflammation I was dealing with, and consequently, improved my health. The endocrinologist informed me that “lots of people have gluten antibodies” and that most people have no problem with it. He then advised me to drop the chiropractors and let him manage my case alone. “Too many doctors chasing the same thing,” he said. I agreed with him on that point, but I didn’t like that he was telling me to drop the only doctors who ever listened to me. I then brought up another concern with him that was raised by a new primary care physician (who happens to be natural-medicine focused, but she is a member of the allopathic community). She said that she was concerned that I was having trouble converting T4 to T3 (an explanation of what this means can be found here). Most endocrinologists are focused on T4 only medications (Synthroid). Again, the doctor shut me down, telling me that it’s rare for T4 to T3 conversion to be a thyroid patient’s problem. He then ran tests to check for my current thyroid function.

I should have just dismissed the guy right there when I realized he wasn’t listening to me. I felt a little bullied and more than a little bit minimized (a word I learned from my chiropractor) when I was in his office. The problem is, I hadn’t quite regrown my backbone yet, and I was in no condition to stand up for myself. Over the last few days, I’ve asked myself, “Why should I have to stand up for myself at a doctor’s office? Isn’t the doctor supposed to be supporting me when I’m sick?”

I still wasn’t ready to completely drop the guy until I got the lab results back. The endocrinologist made notes on the report stating that, yes, I tested positive for Hashimoto’s Disease (I’ve known that for years – didn’t he believe me?) and that all my lab values were normal on my current dose of medication. Had he missed the fact that I still don’t feel well? What’s more, even though we discussed another doctor’s concern that I was not converting T4 to T3 very well, the guy didn’t even test my T3 levels. I felt that his lack of testing for the possible complication I brought up showed disrespect for both me and my other doctor. It’s not like I’m a newly diagnosed thyroid patient. As a matter of fact, it was clear to him from the beginning of our appointment that I am very knowledgeable about my condition. Why had he no respect for that?

I can’t lie – I’m really angry about this whole thing. I cannot believe that it should be this hard to get healthy in a country that has as much money as the United States does. Why does it have to be a rare thing to find a doctor who actually has the time to treat a patient adequately and who is respectful about the patient’s concerns? Just a few things to ponder.

Knittin’ and… Video Games?

I still haven’t the energy to do anything too exciting about my knitting or my kittens, let alone post about it (but I have, at least, gotten to the owl part of my Owls sweater). I found my camera, by the way, and I have every intention of photographing my sweater for the next post. I’m mostly posting because I saw couple of things that I just had to share with my yarn people.

There are at least two new video games out with a fibery theme:

Kirby’s Epic Yarn

Crafting Mama.

I was under the mistaken impression that there just wasn’t a whole lot of crossover between the knitting and video games crowds. I wouldn’t have guessed that there was crossover between the yarn craft and bowling crowd, either, but there is at least another woman in my league who crochets between turns. I also met a crocheter at Tacticon. We’re everywhere!

For those of you who are following the uphill battle with my health, I have just a little news. I went to the neuro-endocrinologist, and he did find a few things. I tip to the left when I walk with my eyes closed. He says that points to a mid-brain issue. He was also concerned about my low blood pressure, so he prescribed a supplement with licorice root in it. Normally, licorice root will raise blood pressure, but of course I cannot be normal – it dropped mine. I was taken off the supplement today. I’ll be very interested in what he has to say about it when I see him later this week. I have a feeling I’m going to hear the five word phrase that every doctor seems to say to me lately: “I’ve never seen that before.”

Wish me luck that this can be solved.

Staggering Along

I’m still here.

Every day is a struggle, and my health is probably the worst it’s been, well… ever, but I’m alive. I’m in the care of good doctors who are trying their hardest to figure out the mysteries that are my health problems.

I’ve been knitting, but I can’t seem to focus on it as much as I would like. You know I’m in serious trouble when I can’t foster kittens, can barely knit, and fail to see the humor in farts. Farts became funny again last weekend, but I can’t manage to care for kittens right now. When I find my camera (seriously, where do things like that go?), I’ll put up pictures of the Owls sweater I’ve been working on.

The thing is, the health problem has taken over my entire life. It made me so depressed, so completely devoid of energy that I had to do something to help myself. I’ve spent literally hundreds of hours researching endocrine, neurological, and immune system diseases over the course of the last month. I bring my research to my doctors, some of whom are better about looking into it than others, then we do tests. Many of the tests have come back with the complete opposite of the result that the doctors or I expect. It’s been baffling.

This week, I’m going to see a few new doctors. We’re now back to the idea that my problem may be in the nervous system. I abandoned that idea a while ago because I suspected that the nervous system disorder is a symptom and not the primary disease, but now that we’ve ruled out so many other things, the doctor at the heart of this whole thing thinks I should visit a neurologist. Fair enough.

One of the tests I took in the last few weeks revealed some hormone imbalances. I needed a stop-gap effort to get through the misery that was my everyday life, and I saw an opportunity in that test. The doctor mentioned a condition called Estrogen Dominance, so I did some research. I came to the conclusion that it was a good lead, and it certainly couldn’t hurt to try to monkey around with the hormones (it’s not like I wasn’t going crazy anyway). After I called the doctor (I was at the end of my rope at this point and I’m not proud of how I treated him), he added progesterone to my the mix, and boy, did it make a difference! I don’t mean I’m cured, or that I even have the stamina to make it through a normal day, but it was a great attitude adjustment. I was content to think it was just having a placebo effect, and that was ok with me. Yesterday I tried to skip a dose (at the advice of the doctor, to see what is making a difference) and it wasn’t pretty. I got progressively more unstable as the day went by, but I was actually unaware of it – Michael had to point it out to me. By this morning, I was so unstable that I decided that the progesterone effects are not placebo at all. I’m not skipping any  more doses. I am, however, adding a doctor who specializes in natural hormone replacement to the mix.

My life right now is just like an episode of House. I go from one suspected (and subsequently ruled out) diagnosis to the next, revisit some of them because of bits we didn’t think about, then re-reject them. I’d like to get to the part where the right diagnosis just occurs to someone and I’m magically cured. I think that for me, unlike House’s patients, there may be multiple things wrong, which really complicates the diagnosis progress.

So, for those of you who keep track of me right here on my blog, I’m still trying. I’m still alive. Some days I don’t want to be, but I am. I’ve got people helping me, and I guess that’s all I can ask for. Thanks for that, by the way.