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!

Dealing with it

Secretly, I was hoping I’d be feeling good effects from the cleanse diet by this point. I kind of hoped that my whole CFS/ME problem was just about a food allergy – I have a lot of unrealistic hope like that. Maybe hope isn’t the word… maybe I mean wish. While I’m at it, I wish for a Pegasus. Oh, and I want to be a Princess, too!

<sigh>

At least the weird stomach aches stopped. That happened within about twenty-four hours. This time, I’m not quite as hungry as I was in the beginning when I did this before. I think this is because I generally eat a low glycemic index diet. There isn’t so much of a carbohydrate addiction to break this time.

What kills me is that I had a bad day on Thursday. I woke up feeling like my head was too heavy for my neck. I had no ambition. I was really cold, despite the thermostat reading 75°. Sure it was cold outside, and a huge snow storm was on the way (we got sixteen inches all told, but it never got terribly cold – maybe just below freezing), but it was warm inside. I had to take three naps, I think. And I couldn’t hold on to a thought. I couldn’t really knit more than a row at a time. I couldn’t read more than a sentence or two. Caffeine didn’t make it better.

Today, however, I had some early morning ambition. I moved some furniture, vacuumed and swept, wrote up and sent a recipe for butternut squash and apple soup to some friends who asked for it, did some laundry…

Maybe two hours into it, though, I felt the wall coming. I have this irrational reaction that leads me to try to outrun it. If I feel the wall coming, I try to work harder and faster. In reality, I think that trying to outrun the wall  just makes it come more quickly due to the stress. Still, I feel compelled to try. I think this is the most frustrating thing about the whole chronic illness thing: I’m a healthy, ambitious person stuck in a sick, lazy person’s body.

I’ve been able to knit some today and on Friday. It made me think about how I said I’d post my current works in progress. It’s been a long time since I’ve listed them. I think I’m just going to mention the ones I am actively working on. All of these projects are for other people. Most have a deadline. The others are just fuzzy memories at the moment.

These need to be done ASAP. Winter seems long, but it doesn’t last forever.

• K’s winter wear. For Christmas, I sent K’s husband (Dr B) a hat and scarf. It’s been so cold where she lives that she confiscated these items a few times so she could be warm when she left the house. I’m making K her own set (with mittens as a bonus!) so she and her husband can be warm outside the house at the same time.
• Dr R’s giant socks. I really need to make smaller friends. He wears a size eleven shoe. Fortunately, he wants warm, worsted weight socks. Totally doable.

This will be due soon enough. I have several friends who are expecting babies, and only one has announced it. I get to know early because I am the knitter and I need time to produce the baby items!

• Crayon Blanket. Jen announced that she’s expecting a little girl. After the blanket, there will be cardigans and booties and whatever else I can think of. That catch is that Jen lives in Florida and is sensitive to wool. This means I need to make cool, wool-free items.

I’ve been working on this for a long time. I’m not sure what about this is taking me so long.

• Gentleman Socks for Michael. I started these in April of last year. On the bright side, Michael already has a pair of socks I made him. I just wish he had more. I wish I had more. Alas, my knitting interest is fickle and I can’t force myself to work on something I’m just not feeling. I keep this one out, though, and put on a row here or there. I’m on the second sock, and I’ve even turned the heel. I can see the end, I just can’t seem to bring myself to get there. I really wonder why.

Oddly, I like the knitting deadlines. I feel like my knitting has purpose. I feel like people are expecting something of me. It’s all I can do to contribute to society these days, a few hand-knit items for people who appreciate them.

I expect to be casting on more things soon, despite my unlisted but definitely unfinished projects waiting in the closet. My acupuncturist is a knitter, but she stopped knitting over 30 years ago. She has admired my hand knit socks when she was busy sticking needles in me. She claims that she is not good enough at knitting to make socks. Everyone who knits by hand deserves a pair of hand knit socks, so at some point she will get some.

I’ve run out of energy again, so I’m going to have to end this post sooner than I’d like. I’m going to try to get pictures of the works in progress for the next post (which I really hope will occur in a day or two). What I’m hoping for the most is to feel well enough to see if the shelter has something for me to foster. I’ll keep my fingers crossed.

A Tangled Skein

This skein of yarn will be a pair of socks. Soon. It started out as a reasonably well-behaved skein, waiting in my sock yarn cabinet. Yes, my sock yarn has its own space, separate from the regular yarn – I don’t want the other yarn to feel fat. The lace-weight is clearly anorexic and the rest of the yarn just feels sorry for it.

I got this brilliant idea to make a pair of socks for a friend, with the intention of giving one to her on her birthday and one on Christmas (these events are days apart). I have to make two, so they count as two separate presents. I thought the idea might be hilarious, but maybe you have to be a knitter to find humor in that.  She has identical taste to me, and she loves my knitting, but doesn’t knit herself. So, I have no qualms about using my precious Malabrigo yarn to make her a pair of socks. In fact,  I was thrilled to be making these for her so that she may all at once learn the wonder that is Malabrigo and the superiority of hand-knit socks. The plan was just so perfect. Who knows, maybe these socks will inspire her to ask for knitting lessons…

As soon as I had the information I needed to make the socks, I ran upstairs to search for this yarn. I put it on my swift so I could wind it into a ball, but then it started to misbehave. The end tied to my ball winder kept catching in odd ways on the rest of the skein, and at some point the yarn became wrapped around the swift itself. I had to disconnect the swift from my table to get the yarn off, and then I had to commence the task of untangling the skein and winding the ball by hand. This bit is significant because, if all goes well, it takes maybe two minutes to wind a perfectly behaved skein into a ball. The above mess took about twelve hours total of my and Julie L’s time. Despite the fact that it took a lot of my time and that of my friend, the end result will benefit someone else, and that gives me great pleasure.

As soon as this happened, I saw the metaphor of my current life situation in the whole thing. Some people would see this mess and decide it wasn’t worth their time. The yarn would be discarded or given away. Others, like me, see the value behind the surface mess and will patiently pick at the knots until it has all been straightened out again. Not unlike what I’ve been doing with the CFS/ME thing.

I found the website for Dr Cheney (who linked CFS/ME to diastolic cardiomyopathy). He listed some blood tests that he would want a patient coming to him to have completed ahead of time for the sake of speeding up the part where he starts treating her (I say her because CFS/ME predominantly strikes women). I showed this to Dr B, who enthusiastically went along with the idea of running these tests.

We only did a small subset of these tests so far, including the tests for CMV, VIP, MSH, and C4a. CMV is Cytomegalovirus, which is one of the herpes viruses implicated in triggering or occurring opportunistically in CFS/ME. VIP measures the status of part of the autonomic nervous system (specifically for me, it can explain why my circadian rhythms do not exist). MSH measures the status of the hypothalmus (and in my case, would explain my lack of appetite). The first three tests came back abnormal, even by the lab standards: CMV is high, and the others are low. This is good news, because we finally have something we can work on. The particular way these tests are abnormal pointed us toward mold illness. The idea is that for some reason, certain people are really sensitive to the toxins released by mold. I’ve lived in humid environments for most of my life, and I could always tell you if a building had mold in it as soon as I walked in because I would have trouble breathing (and a few other, less prominent symptoms). If mold spores got into my lungs or heart (moist, dark environments are great for fungal growth), well, it would make sense that I would continue to have exposure symptoms despite having being away from mold-infested buildings. So, according to these tests, I have an active CMV infection and mold toxicity – so we’ve found two contributing factors to my illness.

So, a couple of knots untied, right? Well, the C4a test was delayed. If it were high, it would indicate that I was having inflammation due to mold biotoxins. When the results finally came in, they were in the lower third of the normal range, the opposite of what we would have guessed given the previous results. We’ve encountered yet another knot in this tangled yarn.

It is very easy to get frustrated with all of this. When we finally seem to be getting somewhere, I get a test back that tells me I was barking up the wrong tree after all. I know my CFS/ME isn’t from a single cause, but rather the fact that just enough bad things came together at the same time. What gets me through is treating each aspect as we find it. I kind of don’t care that I am either not getting better or only getting marginally better, I just want to feel like I’m still working on it. I keep seeing people posting pictures of the path to success on Facebook, and they look just like the tangled skein of yarn at the top of this page. I guess I have to believe that if I keep untying one knot at a time, eventually I’ll achieve success and untangle the illness.

There has been one bright spot, though. Dr B told me that all the research I’ve done has helped him with some of his other, more difficult to diagnose patients. He wanted me to know that even if I haven’t had a whole lot of success, my work has taught him things that allowed him to better help other patients. Just like the socks, I put in a whole lot of work to benefit someone else. Maybe that’s not so bad.

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.

A few endings

My life seems to be about endings right now. Some are good, some are bad, and some just are. I’m not sure if that’s contributing to the way I feel, but right now, I’m right back where I started over a year ago. I’ve had the slow onset of emotional instability, followed by crushing fatigue and depression. The physical pain is getting bad again, I want to be dead, my brain is only working at its slowest possible pace… it’s all just going down hill.

Like I said, there are some good endings. I finished Alexis’s sweater for when I see her at Christmas. Julie L helped me find the cutest buttons that I believe make the whole project.

Now I’m working on booties to add to the baby hat and mittens set I made for Vickie. I’m also working on a sweater for Blaine and a blanket for another friend who is expecting a baby in the summer.

My back yard has turned into a beautiful fall scene. I do adore summer, though, and it just signals the end of my favorite season.

(click to enlarge)

There is one ending, however, that is currently devastating me. I’m not sure if it’s contributing to my current state of decline, but I wouldn’t doubt it. On Monday, I have my last appointment with Dr B. Normally, this wouldn’t be such a big deal. I’ve had a lot of doctors come and go, and I’ve had a lot of friends move (and I’ve done so myself). But this time, it’s so very different.

When I got sick nearly a year and a half ago, Dr B was there to watch my decline and try to help me through it. Through the process he became like family. He didn’t try to treat me like a science experiment like the doctors I am seeing now are doing.  Unlike my other doctors, he worries about how side effects and risks of diagnostic procedures are going to impact my life. It genuinely upset him when he thought I might suicide. He was never content to just tell me that he had no idea what was going on and that I had to live with it. He kept trying. That persistence on his part helped me stay focused on my goal of getting better, helped me to believe that maybe I could get through this. And as insignificant as this might seem, he was simply there to hold my hand through the whole thing. It might seem odd, but I am not at all afraid of this illness, or the possibility it could kill me, or anything like that – I’m simply afraid of going through it alone. Afraid of going through it with doctors who are cold and uncaring, putting me through pointless procedure after pointless procedure, telling me maybe I have a psychiatric disease or that I need to exercise more despite that fact that it makes me worse (I do think that part of my current decline is the exercise program the cardiologist started me on). I’m afraid of never getting better and vanishing into obscurity. I’m afraid no one will notice my absence. I’m afraid no one notices now.

Dr B will still be with me, sort of. We’re going to keep in touch, on more of a peer-to-peer level. It’s fantastic, and he couldn’t have handled it any better, but the fact remains that even with all the technology we have, it won’t be the same. I talk to my friends on Facebook all the time, but it isn’t a substitute for seeing them in person. I feel pretty darned isolated in my current condition. I don’t know what it is about that person to person interaction, but it matters. Heck, I adore my brother and his family, but between visits, it seems as if they don’t exist. I don’t live near family, and save for my brother, I don’t seem anyone all that often. We just aren’t a connected bunch. That’s why losing Dr B is so devastating – I feel like another family member is just… leaving.

I’ll get through it, or I won’t. There is no point in worrying how it will turn out. It’s only the here and now that matters, and it sucks. <groan>

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.