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. :-)

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!

Light a Candle

It’s been a year. A whole year since I’ve been able to stay awake for an entire day and have energy to do the things I want to do. An entire year since I had a day entirely free of pain or unexplained numbness. A year since I’ve been able to enjoy travel. A full year since I got so horribly, horribly sick. It’s not the kind of anniversary I would have hoped to be celebrating… well, ever.

It’s also been a year of learning for me. A year ago I couldn’t have told you that the nervous system could wreak so much havoc with a person. I didn’t know all that much about the different types of diabetes or the causes of the diseases. I didn’t know more about cellular mitochondria than the basic fact that they are the powerhouse of the cell. I didn’t know how the various systems in the body interact and interfere with each other. Most of all, I didn’t know just how much medical information is available on the internet. For the record, it’s a lot.

I’ve tried to take stock of what progress my doctor and I have made in determining both what is going wrong with me and why. Although I tend to feel like I’ve gotten nowhere, I realized recently that we know a lot more now than I would have guessed. For example, we re-diagnosed my “asthma” as a heart condition. While it hasn’t exactly stopped the symptoms, the knowledge of why I couldn’t breathe and why I had chest pain led to me treating it differently. I am taking a much lower dose of thyroid medication, which has reduced the heart palpitations that led to the backup of blood into my lungs. The condition certainly isn’t gone – just last night I sat for a few hours on my sofa, debating whether to wake up Michael and get him to take me to the Emergency Room for the ridiculous chest pain I was feeling. Still, it’s less pervasive. We also (very recently) came to understand that many of the hormonal imbalances I’ve had are actually being driven by the nervous system. The basic idea of neuroendocrinology is that the nervous system senses chemical imbalances in the body and corrects them as necessary. All of the weird adrenal insufficiency, hypoglycemia, and deficiencies in serotonin and dopamine are more than likely simply about the nervous system, the hormonal thermostat, being on the fritz. We’re still working on exactly why this is happening to me.

I’ve learned a lot about how medicine works this year. A lot of people get frustrated and even angry when they see a doctor and don’t get diagnosed right away, but I have learned that this is a very foolish way to behave. The problem is, many diseases look alike, and even if you can identify what the disease is, there are tons of things that could cause it. It takes time, patience, and persistence to accurately answer these questions, especially if what ails you isn’t common. Let’s just take the example of my fatigue – there could be so many causes. It could be that I’m not sleeping enough or getting poor quality sleep (and if the sleep is poor quality, it could be that I am waking up repeatedly or not achieving deep sleep). It could be that I’m not making energy. It could be that I have a hidden infection that is taking energy from me. It could be that I’m not getting the proper fuel (like oxygen or glucose) to my brain. It could be more than one of these things, or none of them at all. The diagnostic process is long and tedious.

I recently tried a new therapy for diagnostic reasons, and in the future I will attempt to use it as a treatment. My doctor spent a weekend at much higher altitude than we currently live at, and he had symptoms that resembled mine. He said that he felt weak and he couldn’t focus, and realized that his feeling matched my description of what was happening with me. If he felt that way because of oxygen deprivation, then maybe that could be at least part of my problem. He sent me to try mild hyperbaric therapy. Basically, I get zipped up into this tube and oxygen is pumped in under pressure. I think it puts me at roughly 1.5 atmospheres. I just sit there for an hour, doing whatever I want. At the first session, I had a very interesting thing happen. At some point, I could feel my heart racing (a phenomenon that happens all too regularly these days). I placed the pulse oximeter (a device that measures your pulse and oxygen concentration) on my finger and had a startling result: despite being under pressure, my blood oxygen dropped to about 90% and my heart rate went up to about 127. Mind you, I couldn’t really do much to raise my heart rate in that tube, and the pressure should have been keeping my blood oxygen level up to 99% or above. I went back for a second session because I noted that right after my treatment, I was overtly hypoglycemic. My doctor and I thought that if we were pushing oxygen into my cells, maybe they were grabbing the available glucose and trying to actually make energy. I tested my blood sugar, oxygen and heart rate during my second visit, and had odd results. I stayed hypoglycemic for the first half of the treatment, but then during the second half, my blood sugar started to rise along with my heart rate. In fact, my blood sugar kept rising dramatically until about two hours later when I finally stopped to eat, at which point it started to go down. This is the clue that told my doctor that my blood sugar wasn’t being regulated by what I ate, but rather the nervous system. Since that discovery, my doctor and I have been trying various supplements that should both raise my blood sugar and reduce neurological inflammation. So far, I’ve had very little luck, but at least I know what I should be treating.

I have heard a quote saying something like “It is better to light a candle than to curse the darkness.” I’ve done my share of both in my situation. I light one candle, and it goes out, frustrating me to no end. I curse the darkness while I search for and light the next candle, only to have to repeat the process when the next candle burns out. It is only the fact that I have good friends who have advised and encouraged me this whole time that has kept me looking for the next candle. I used to think I was just being a big baby for not being able to handle what I’m going through, but I’ve learned over the course of my illness that most people wouldn’t have been able to handle things as I have. While I don’t claim to have been a good sport about the whole thing, I didn’t just sit down and give up. And believe me, I’ve wanted to. I tried to. I still want to quit. I just don’t know how.

The fact that I have been sick for a year has triggered a need for me to reevaluate my life. I have to figure out what I want to do now, given that my prospects of getting “normal” are bleak. The hardest thing I’ve had to do is reassess my value as a human being. A friend of mine was recently in school to become a teacher, and she told me something interesting she learned about where people get their self-esteem. Most people get it from their looks. It is rare to get your self-esteem from your accomplishments. I’ve never thought myself attractive by any means, so I am one of the rare people who gets my feelings of self-worth from the things I do. This has been devastating of late, given my inability to accomplish things. I’ve realized that only way I’m ever going to feel like I have a right to exist on this earth is if I can make a valuable contribution. My therapist and even my doctor have tried to convince me that I don’t have to do something to be valuable – that I am inherently so. I don’t believe them. I feel like a waste of resources. I can’t work at a regular job and earn an income, so all I do is spend the money my husband makes on health care for myself. It’s by no means all of the money he makes, and he is happy to spend the money, but I feel the influence of the American culture. As far as we want to think we’ve come, the truth is much of society doesn’t see women as valuable if they don’t either earn an income or raise children – or preferably both. It’s easy to say, “No, I don’t think that way…. no one thinks that…” but I promise, they do. Recall my interaction with another juror at jury duty. I can also promise you, I judge myself even more harshly than those around me. I get frustrated that I can’t keep my house as clean as I would like. My therapist suggested that maybe I should hire some help, even for just one day a week or maybe once a month. It’s just that I feel so guilty napping or just watching tv while I pay someone to do the housework that I should be capable of doing. I just know that who ever comes over is going to think, just like everyone else, “well, she doesn’t look sick.” This person will judge me as some spoiled, lazy suburban housewife. Or worse, I’ll judge myself that way.

I keep thinking that I should get a part-time job, anything to get a little socialization so the isolation of my condition doesn’t drive me off the deep-end. The inherent problem with that, I realized, is that the kinds of jobs I can get in my condition won’t be all that intellectually stimulating. As crazy as this seems, I actually like going to see my doctors, especially Dr. B, because we have discussions about really complex ideas, and he treats me like I’m intelligent. He’s even told me that he thought I should go into medicine because I showed such a great capacity for understanding the subject matter. The thing is, I have worked at minimum wage jobs before, and while I liked many of the people I worked with, I wasn’t treated well by people in charge. I was frequently spoken to as if I were stupid and uneducated. I was expected to adhere to arbitrary rules about looking busy and being somewhere during certain hours despite my ability to accomplish a lot in a relatively short time. I wasn’t asked to use my mind, but just expected to be a warm body. The hardest part was when I had good ideas but was shot down because it wasn’t my place. I even had a boss or two who actually told other people that, in essence, they felt threatened and wanted to make sure I didn’t advance. Not all of my jobs have been this oppressive, but especially in this bad economy where there are so many job seekers that employers view people as expendable, I don’t stand a chance. I need to feel valued, and I’m sure that being told that I am replaceable is not going to help my lack of self-worth.

I still have a lot to figure out. I keep hoping for that miracle cure, the good idea that either my doctor I will have that will just change the world for me. I still really want to work at a job where I feel valued. I’m not sure that either of those is possible, but for now, I’m going to keep looking for new candles. Now, where did I leave that match..?

Fragile Things

I’ll get right to it – I’ve been unwell. It’s kind of my fault, but not entirely. Here’s what happened:

At the end of April, I got a group of five bottle-feeders. They came to me with names of bathroom supplies, like plunger and toothbrush. Michael and I renamed them as characters from the musical “Guys and Dolls.” We have Rusty, Nathan, Adelaide, Benny and Sky. Except for a brief bout with an eye infection and maybe some minor cold symptoms, they have been in good health.

Not long after I took the “Guys and Dolls” kittens, the shelter called and asked if I would take a mom and kittens. They said she had a few surrogate kittens, and they were worried she’d dry up before the kittens were done nursing. They wanted to place the kittens in a home where the foster parent could bottle-feed if necessary. The other kittens were weaning at the time, so I said I’d take them, too.

When I got to the shelter, I learned that the mom cat actually had two more litters mixed in with hers for a total of eight kittens. Well, no wonder they worried she’d go dry – there were too many kittens. We named the kittens Pillow (because the mom, Cinnamon, used him as such), Gingham, Velvet, Linen, Lester (Dr B named him) Esther, Cotton and Satin.

 (Click to enlarge)

When they got home, I learned that Cinnamon just wasn’t really into the whole eating thing. I had to hand feed her for the first few days, but after some time she started to eat on her own, so long as it was Fancy Feast and not something good for her like Wellness. I didn’t care what she ate, so long as she just ate food: she did have eight kittens to feed, after all. I suspect she had a cold that she was hiding (as cats are wont to do), because within a few days several of the kittens developed eye infections and cold symptoms. As some of them began to lose weight, I began supplemental feeding. I took some of the healthier kittens with me to run errands while mom tended to the sicker ones. It didn’t really matter.

First Pillow died. He started to lose weight, and then later when I would visit the kittens, I’d find his nose would be plugged closed with snot. I started thinking about taking him in for euthanasia, but then I found him cold and stiff a few hours later. Nature made the decision for me. A few days later I took Linen and Gingham into the shelter because I thought Linen needed to be put down (for the same cold that Pillow had) and I wanted them to look at Gingham’s eye. The shelter agreed about Linen. They also put Gingham down because the eye that had swollen and gotten crusted shut had actually ruptured. She was too small to do surgery to remove the eye, and the condition is very painful. Two days later, Velvet met the same fate as Pillow and Linen. It was just so sad.

In light of what was happening with the kittens, I began thinking about my own situation. I had gotten tired of taking over 30 pills a day, so I started skipping doses. One morning, I woke up and felt a really strong resentment toward all the pills, so I took the day off. The resentful feeling lasted a few more days, so I just stopped taking them all together. I kept on the thyroid meds, but that was pretty much it. It’s just that with all the kittens dying, I thought about Nature’s wisdom. There were eight kittens living in the exact same circumstances. Four got really sick, and four did not. The ones who died were just weak, and interfering on my part would only have prolonged the suffering – in fact, it did prolong poor Pillow’s suffering. I thought about how I was taking that large number of prescriptions and supplements, and that my energy level was not improving. I want to be in such a position that I can go back to school and get a job. Staying home for an extended time is nice sometimes, but not when you don’t have the option to stop doing it. I felt the reward just wasn’t big enough for all the work I was putting in. So I quit.

A week later, I was definitely feeling the effects of my decision. Every day I got a little more fatigued, until finally getting out of bed was a real struggle. I mentioned that I had stopped the supplements to one of the girls at the front desk at Dr B’s practice, and she encouraged me to talk to him about that. She agreed that the number of pills I took was unwieldy, but maybe I should see what was strictly necessary and stick to that. After thinking it through, I decided that it was indeed best to be up front with the doctor and let him know what happened. I wasn’t prepared for what happened after.

Dr B got a little upset that I had stopped. Not because I wouldn’t be purchasing supplements from his office, as some who criticized his chiropractic practice had suggested. He was upset because he felt that we had gotten into a situation where he cared about my outcome more than I did. After a prolonged period of disagreement and a small “fight” that I would really rather not detail, I learned that Dr B was a much better doctor than I had realized. I mean, yes, I realized that his style was very different from other doctors I had seen, and I kept seeing him for that reason. He wasn’t content to say, “Well, I can’t find anything wrong, so you’re fine.” If I wasn’t well, then he wanted to keep looking for the reason. But what I learned from the situation is that he actually cares – he wasn’t just checking off boxes so he could say he did his job regardless of the outcome. I learned that he doesn’t stop thinking about me when I leave the office; in fact, he said that he thinks about my situation every day. Even though I wanted to give up, he didn’t want to. In my experience, every other doctor I’ve ever had was ready to move on long before I was.

To be honest, I have no reasons of my own to continue treating my chronic fatigue. I have lost hope that I will have a future in which I won’t be tethered to pills and doctor’s appointments. I am pretty sure that I will never be able to stick to a reasonable sleep schedule in which I get up in the morning and sleep at night. I’ll never be able to hold a job because my health just isn’t reliable. I can’t enjoy a vacation because I have to sleep so much. It takes a lot of caffeine to make it through a day. When the caffeine doesn’t work, I have to move on to pseudoephedrine. I felt like that was Nature’s way of telling me that I am just not viable, like all the kittens who died recently.

I spoke to a few friends during my crisis, and one was able to give me a reason not to quit treating my condition. She pointed out that despite what I might hope for, this condition might not kill me. In fact, it may just disable me to the point where I lose my agency, my ability to make decisions for myself. I value that, at least, and I am moving toward getting back on the track I was on, with all 30+ pills/day. I won’t lie – it’s hard to motivate myself to keep trying. My reserves are gone. I’ve been fighting fatigue for over ten years, and all I’ve gotten is worse. It’s at a critical point now, and I’m not sure it will ever improve. Somehow, between my friend’s reminder that I could find myself seriously disabled and my doctor’s personal interest in the situation (I really hate to disappoint people whom I admire), that’s going to have to get me through.

While I was off the supplements, some pretty scary symptoms emerged. At first, I stopped being able to feel the right side of my face, just like after the stroke-like event I had in February. It’s like when you’ve been to the dentist and had a filling – I can tell that there is something touching me from the pressure, but my ability to really “feel” it is gone. In a few days, the numbness started spreading in to my ear, and I actually started having hearing trouble, like I had my hand over my ears. The numbness also started to spread to the left side of my face.

Even after I restarted the supplements, new symptoms emerged. I went out for coffee with a friend, and when I went to the bathroom, I noticed I had swelling around my neck. Upon closer inspection, I realized that it was swollen in the distinct shape of my thyroid gland. I wasn’t too terribly worried about it, but to be fair, I’ve lost the ability to judge what is a serious issue and what isn’t. I err on the side of dismissing things, largely because I don’t want to be seen as a hypochondriac. I read a book (Life Disrupted) in which the author mentioned that people who have chronic disease tend to ignore what could be serious symptoms, in part because they are so used to being sick. She said that it’s important to try to step outside yourself and imagine how a healthy person would see the situation – I’ve tried to take that to heart. When I showed the swollen thyroid to my friend and she freaked out, I considered the bit of wisdom I had obtained from the book and listened to her. I called Dr B and the allopathic nurse practitioner (C) that day.

The nurse practitioner took blood samples and scheduled me for an ultrasound. She and Dr B were both under the impression that this was just a flare-up of the Hashimoto’s disease, and the blood tests would show abnormal thyroid hormone levels as well as an increase in antibodies. Well, the tests all came back normal. In fact, the antibodies were lower than they have been most of my life (they were 40% of what they were when I was checked four years after my diagnosis).  The ultrasound revealed a small nodule, but it was only concerning enough to C to make her want to monitor it yearly. Again, major symptoms with no explanation. It’s infuriating. Honestly, I kind of wish she said I had cancer so that we could do something about it. Not that I want to have cancer, I just want an answer. I want to be able to do something about this.

I have managed to get some knitting done since my last blog post. Admittedly, it’s hard to focus now, and the work is intermittent, but it happens. I finished a few projects.

Gwendolyn:

 

I made her from a large cone of angora fiber I got from Art Fibers many years ago, before I moved from San Francisco. The thing is, she sheds. Pink bunny fur all over everything. I still love this shawl, though, and I deal with the fur. Just like a kitten.

I also cast on and finished these fingerless gloves for my sister-in-law.

I made them from some merino/tencel yarn I spun in 2008. Alicia really liked the yarn, and who better to give it to?

I’m also designing a shawl. I don’t have pictures of it yet because I want to have some people test knit the pattern. I plan on working on it when I have focus, but charting lace is kind of fiddly. My version of the shawl is going to be a wedding ring shawl. It’s made out of 1-ply cobweb weight yarn. The idea is that the knitting is delicate enough to pull the whole shawl through a wedding ring. I will try to have at least teaser pictures soon.

That’s what I’ve got for now. I can’t promise when I’ll update again, but I will. I have to take Nathan and Rusty back to the shelter today because they just made weight. I need to unload kittens. I suspect that I will have to take another long break from fostering because of my health, but we’ll see. I hope my condition doesn’t take away everything…

A Little Faith

This week has been brutal, no doubt about it. I have a lot more going on than I normally do, and a little bit of Murphy’s law kicked in while I’ve been trying to juggle it all.

On Monday I went out to run errands, despite the fact that I had been up since 2:30 in the morning. I had appointments to make later in the week, and since I was traveling on Thursday, I needed to get out at the first opportunity.  The day went as well as could be expected, and when I got home around 3:00, I wanted to collapse. Of course, since I had babies at home, it wasn’t an option – I had to feed the babies first. Inky (the little black one), Misti (the grey one) and Muffin (the black and white one) all came out for their bottle. After feeding the first three kittens I found Bear (the bigger black one) sleeping in his carrier. That’s pretty common for a kitten to sleep so hard he misses the fact that everyone else is screaming for the bottle. I woke Bear up, and he nursed for a moment before giving up. I re-fed everyone else, then realized that Bear was sleeping in my lap. Concerned, I placed him on the floor and tried to get him to walk – he was ataxic (medical for “walking like he’s drunk”). I immediately put Bear in the car and rushed him to the shelter.

The shelter staff took Bear into the back to begin rescue procedures. As I was waiting for them to update me, my cell phone rang. Normally I don’t take phone calls from anyone other than Michael when I’m busy, but an instinct told me to pick up the phone this time. The caller was a casual friend of mine who happened to adopt Donald from the last litter of foster kittens. I didn’t blog about these kittens, I realized. It was in November or December, and mostly Michael was caring for them since I really couldn’t.

These are Donald, Goofy, Ariel, and Jasmine. Poor Donald was really sick, but he pulled through and became the sweetest little guy! Goofy died, though. He had a case of megacolon – his intestines stopped working and he got so constipated that he couldn’t be unblocked and they had to put him down. It was incredibly sad.

Back to the present: My friend had just moved into a new place over the weekend, so Donald was already a little scared. When the pizza guy came by to deliver dinner, Donald snuck out of the house. On Monday, a little girl brought Donald back to his home, but Donald was in bad shape. The little girl witnessed one of the neighborhood boys stomping on Donald. My friend was in a panic, not sure what to do. I instructed her to take him to the emergency vet. When a cat is injured like that, even if you can’t find broken bones, it’s important to make sure there’s no internal bleeding or something. I also advised her to call the police – that kind of animal abuse is a crime. Since I was at the shelter, I had an animal control officer set up a case for her. The bottom line is that Donald is ok now, but the little girl’s mother made her change her story to protect the boy who hurt the cat, so it appears there will be nothing done about the abuse. Great, that mother just taught her daughter several very bad lessons – it’s ok to hurt animals, don’t report crimes, and lie when questioned by the authorities. I hate people.

As for Bear: the shelter kept him overnight on IV fluids. They returned him to me the next day, telling me I just hadn’t fed him often enough. I try not to take comments like that personally. First of all, I’ve been doing this for a long time – I know how often to feed kittens. It was his regularly scheduled feeding time, and the other kittens were just fine. Second, when I told the vet how many kittens I’ve fostered (almost 250 now), she said I’d seen far more of them than she had. The vet was young, probably fresh from vet school. She really had no idea what she was talking about. I decided that I would just monitor him more closely for awhile. He’s been fine since the incident, so I just chalked it up to the fact that sometimes kittens crash and even die for completely unknown reasons.

As of right now, the kittens are great! They have started eating just a little bit of wet food mixed with milk. They are still eating the dry food as well. They use the litter box, and play just as I expect. Misti even made friends with Duck.

Duck was afraid of the kittens when they couldn’t really get around, but now that they are no longer infants, Duck thinks they make great playmates.

I’m plugging along on my knitting WIPs. I finished one of Robert’s boot socks with the intention of sending it off to him to be fitted. I later decided that I would like to have the socks together so I can just make them match, and if I have to rip them back and re-knit them I’ll count it as another project for my goal of finishing up the WIPs.

I’m pretty happy with the way the first one turned out.

I know a lot of people have been waiting for the health update, so here it is:

On Thursday, I got on a plane for Burbank to see a woman (we’ll call her H – she isn’t a doctor, but she has a bachelor’s degree in biology) who specializes in non-cognitive biofeedback. I’ll be the first to admit, this diagnostic method seems a little… exotic. In theory, this machine can read meridians in the body and tell where your body is stressed. I went into it with a healthy dose of skepticism, but I thought that since no other diagnostics were really telling me anything (the antibody tests Dr B ordered came back negative, but there were other things I’ll get to in a minute), well, I had nothing to lose.

One of the first things the machine told her was that I was severely hypoglycemic. I already knew that – the tests that Dr B ran showed that my hemoglobin A1c levels (a measure of your average blood sugar over the long-term) were too low. Also, when I got out of the car at the airport, I wasn’t feeling right. Although I didn’t have the right symptoms for hypoglycemia (sweating, dizziness, trembling – all adrenal responses), I immediately got out the blood glucose meter and checked my blood sugar. The meter read 45, and it reads 15-20% high, which means that my real blood sugar was between 36-39. That fits the clinical definition of hypoglycemia. This was the most severe hypoglycemic event I’ve ever had, and I wasn’t sure I’d be able to correct it well enough to fly. Fortunately, I had the foresight to bring candy canes left over from Christmas with me, and they worked. Crisis averted. The scary part is, other than just a vague sense that something was wrong, I had no symptoms. If my blood sugar gets too low and I am unaware, I could have seizures or even go into shock or a coma. That’s just such bad news.

The question is not whether I am hypoglycemic or not, it’s why am I hypoglycemic? The first thing the machine told H is that I have a massive infection. I’ll go more into detail about it later this week, after I speak with Dr B about the results. Overwhelming infection can most definitely cause hypoglycemia – in fact, that’s the most common cause I’ve seen for the death in my foster kittens (infection culminating in irreversible hypoglycemia). The next thing that came up is that I’ve had a large pesticide exposure. That one baffles me – mostly, I eat organic food now, and I wash my fruits and veggies before eating. Maybe it’s the flea medication I’ve used on foster kittens when I lived in San Francisco? She also noted that I had a high insulin load, but she attributes it to insulin resistance (which I am still not sure about – I have been on a diet that should reduce the resistance, and a lot of the supplements I am on also have that effect). There were other things that came up, but we aren’t dealing with them right now. H says that if we change too many things at once, we could do more harm than good.

I’ve invested in books about treating hypoglycemia, and after reading them, I’m sure that this is the cause of my fatigue. I’m still not sure of all of the reasons for the hypoglycemia, and there may be many. Still, this is MAJOR progress, and I’m feeling optimistic that it can be sorted out now. There is a very real risk that I might not survive long enough to get better, but if I’ve lived this long with an infection of the magnitude H describes, well, I must be a sturdy sort.

I also learned from reading the books (Hypoglycemia for Dummies and a textbook written in the UK called Hypoglycaemia in Clinical Diabetes (Practical Diabetes)) that not all doctors believe that hypoglycemia can exist in patients who are not taking insulin. Really? The textbook repeatedly states that hypoglycemia in non-diabetics is rare and practically dismisses the possibility, but I attribute that to the fact that the book specifically explores the condition in diabetic patients (I got the book because I wanted to understand the mechanisms of hypoglycemia, and it does do that). According to Hypoglycemia for Dummies, even the doctors who believe hypoglycemia can exist in non-diabetic patients don’t believe that diet has an effect on the condition. Again, really? I guess it explains why no one ever talked to me about low blood sugar before. Every doctor I’ve ever seen has been focused on my family history of diabetes (both types) and has consequently been worried about high blood sugar (which I have never demonstrated, but I do have signs of high insulin). It’s the same as the blood pressure – they get all over my husband for being mildly hypertensive, but no one ever bats an eye at the fact that my blood pressure is too low. I’m just going to put this out there for medical professionals to ponder: “There is a functional range out there, people. With a high and a low. Both ends need to be attended to.”

This week, in addition to preparing to travel to San Francisco, I am going to read as much as I can about hypoglycemia and I’m going to discuss what I’ve learned from the books and from H with my doctors. By Wednesday I should have the information I need to discuss what I’ve learned with you in much better detail. No matter what, I’ll check in so those of you following the health crisis know what’s happening.

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