How the World Changed in a Month

Roughly a month ago I restarted my cleanse diet. I didn’t have the miraculous return to health like the first time I tried it, as I established in the last post. I did, however, have a few weird and disappointing discoveries.

After abstaining for a while, I decided to have a bit of coffee. I rely on caffeine to get through a day awake, and I don’t have a problem with the caffeine in tea, so I thought this would be no big deal. I had a cup of an unidentified flavored coffee in my fridge, and it gave me a stomach ache. I gave it a few days, then tried again with organic, plain coffee and seemed to not react. I added cocoa powder (soy and corn free) and had the stomach aches like I had with gluten. I tried chocolate almond milk (again, soy and corn free) and had the same bad reaction. A friend suggested I try raw cocoa nibs, and again, the same. So far, I know I have a problem with cocoa and possibly coffee (unlikely, but still possible. I should test more once I am completely healed). On the bright side, I told this to the acupuncturist, and she did a treatment that should correct that problem. I have to wait until my gut has completely healed to try again, so we’ll just see.

I added rice and potatoes back, too, and the jury’s out as to whether they are a problem. These, too, will be retested after abstaining for awhile. How does a person get so many devastating food allergies/intolerances?

Near the end of the cleanse, something even weirder happened. I woke up one morning and, while putting in my contacts, noticed that the whites of my eyes had turned yellow. I went to a doctor and she confirmed that my eyes were still yellow. She ran blood tests to check liver function, and since I hadn’t had a thyroid panel in a long time, ran that, too.

I was able to follow-up with my regular Nurse Practitioner, C, a week later. “Your tests are perfectly normal,” she tells me. “Every value you have is in the center of the range. Good job with the self-regulation of your thyroid hormone dosage, by the way – that’s perfectly in the center of the range, too.” I should point out, if I haven’t already, that C told me to dose my thyroid meds based on my heart symptoms rather than worrying about the lab values. Better to be hypothyroid than in heart failure as far as I’m concerned.

She then asked, “Were you vaccinated for Hepatitis B?” I told her I was, right before college. “Well, that’s odd – you have no antibodies, no immunity to Hepatitis B. I think you’re a non-responder as far as vaccines are concerned.” Makes sense – I’ve contracted diseases I’ve been vaccinated against (like pertussis) or already contracted and should have subsequent immunity to (like chicken pox – I got it twice). This explains a lot, though. My immune system is perfectly happy to attack tissues that belong in my body, but send in a foreign body and the immune system fails to respond. This, to me, is clear proof that something is wrong with my immune system. More confirmation for the ME/CFS diagnosis.

A few days later, I started to feel ill, My lymph nodes swelled up, I got a little congested… I (foolishly) thought I just caught a cold. Heh. I wish. It turned into the full-on flu. I suffered from that for most of a week, and have spent the last week recovering. The acupuncturist offered her theory about the situation. She said that maybe the jaundice was the first sign of the flu. Maybe it got stuck in the most vulnerable organ I had and then replicated there. I could buy that. Nothing about me is normal.

Luckily, I recovered in time to attend a conference on autoimmune disease at a local hospital today. I will devote a full post to that in the future (I’m no longer going to try to predict when, as my illnesses keep getting in the way). I am glad I made it to that conference – it seems that the research is going in the right direction.

In the midst of all this, I made a career move. Dr B has been telling me that I should get into patient advocacy. He thinks that I have some really good life experience, and I have a lot to add to that field. After dealing with a situation in which a friend was being bullied into seeing what other people thought was “the right doctor” for her condition, I realized Dr B was right. I have had to deal with so many health care choices, doctors who don’t listen (or are just plain wrong), other people who think they have THE answer, and other trials and tribulations of being chronically and mysteriously ill that I have a special insight into the whole process. An insight that I can use to help others get what they want and need out of health care.

I looked up information on how to become a patient advocate and learned that really, there is no process. You can just decide to do the job. There are no certifications or degree programs. There are classes and certificate programs, but they don’t actually certify you to do anything – they’re just educational. I might take some of those classes at some point (especially the HIPAA classes), but yeah, I’m ready now.

My plan is to make educational material and do talks about how to get what you want out of health care. Medicine is an uncertain science, and there is rarely only one right way to treat yourself, especially with a chronic condition. I want to point out that patients have rights to refuse treatment if they so choose. I want people to realize the doctor works for them, and that if he/she isn’t working out, they don’t have to stay with that particular practitioner. I want to teach people how to take control of the situation by doing their own research and getting a doctor to listen. I want people to understand that they, not the doctor, make the healing happen. I want them to really think about how they want to care for their health (i.e. natural vs. pharmaceutical, preventative vs. reactive) and go get that. So, I’ve started by attending the autoimmune diseases conference. I’ve also got a nebulous outline for my first talk.

I’ve already had to put my patient advocacy skills to work with our fluffy friend, Duck. For the last few years, Duck has been plagued with diarrhea. I could usually make it go away with lots of probiotics, but this time, it stopped working. I took Duck into the vet and learned he lost roughly half a pound (this is a lot for a twelve pound cat). The vet did an ultrasound, and showed me that Duck has inflammatory bowel disease. His intestinal walls had thickened in some areas, indicating that immune cells are coalescing. The doctor then informed me that Duck would need to be on corticosteroids and chemotherapy for the rest of his life.

I reminded the vet that I foster, and suppressing Duck’s immune system long-term seemed like a poor choice, given that I invite cat disease into my home with every litter I take. “You’ll just have to cross your fingers with that, I guess,” he told me. I asked what long-term effects the chemo might have, and he said that there was an office cat who had been on chemo for seven years and he was just fine. The vet then gave Duck a steroid shot and sent me home with the prednisone and chemo meds.

I left with the medication, and burst into tears on the way home. The vet nurses told me that I would have to give Duck the chemo meds while wearing gloves – that the medicine wasn’t safe for me to touch. I thought about the idea that, if the medicine isn’t safe for me to touch, how could it be safe for my two-year-old baby to take? I always knew he could die young, but to die of the effects of chemo? I then realized that the principles I wanted to convey in my patient advocacy practice apply here. I sought a second opinion with a holistic vet.

This vet, along with several of my cat harboring friends, thought the suggested protocol was extreme. The holistic vet offered me supplements, along with a vaccine detox (unlike in human medicine, veterinary medicine recognizes adverse reactions to vaccines) to try first. Luckily, Duck likes the supplements, and started eating as soon as the steroids wore off.

He hasn’t had any recurrence of the diarrhea yet. I’m not taking steroids off the table entirely, but I am never going to do the chemo. I decided (after reading about how the outcomes of most cancers do not improve despite treatment) that I wouldn’t treat cancer in myself or my cats (save for easily treated versions like early stage melanoma). No, I cannot justify the use of chemo in any circumstance.

In other news, I picked up a foster kitten about a week ago. Meet Mozzie:

When he sits, Mozzie has a heart on his left flank and a broken heart on his right flank. When he stands up, the markings are less obvious – they’re more roundish blobs.

Mozzie was shy and ill when I first got him. He hid behind the toilet and hissed when we went in to visit. It a matter of days, Mozzie cracked – he loves us now, and turns out to be the most affectionate kitten. Mozzie loves to be held, he loves to purr, and he loves to simply be near his people.

In addition to all the above events, this month I got wind that yet another of my friends is expecting. I’ll reveal who in a few months – she wasn’t telling anyone at first, but decided a few days later that maybe she did want to tell. I’ve informed a few close friends, but I somehow don’t feel right announcing it here just yet. I am knitting and crocheting baby stuff like crazy now. I am squeezing in a few other things, but not a whole lot. I fear Michael may never get his socks!

Well, maybe I’ll work on them when we go on the Caribbean cruise we also planned this month. More details about that in the future.

Told you the world changed this month!

The only thing that didn’t change is that I’ve kept knitting. I finished K’s winter garments:

But I forgot to photograph the mittens before I mailed them! Oops. I’m going to visit her and Dr B in May, so I’ll try to get a shot then. Maybe I can a picture of the socks I made her for Christmas as well.

I’m also almost done with Dr R’s giant socks. I’ll see if I can get a shot if him wearing them on Monday (because I should totally have them finished – they are worsted weight socks, after all…). I’m also making progress on Jen’s crayon blanket. Her little girl is due in June, so I don’t have a whole lot of time left.

Well, I have a lot of work to do. My next priority is talking about the autoimmune diseases conference, so be on the lookout!

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>

Fight for Life

<sigh>

I have accepted that life isn’t fair. I try not to whine about that, but instead do what I can to change the things I have control over. That’s why I’ve pursued the ultimate cause of what was making me sick – I’m not content to just lie about and accept a life of nothing. I’ll tell you, though, life is trying to take me down.

I’ve gotten some of the test results back, including all of the heart-specific tests. I’m now certain there is something wrong with my heart, and I desperately fear that the cardiologist (Dr F) will try to tell me that it either isn’ t really a problem or that it isn’t serious. The Holter monitor, which records every heart beat for 24-hours, showed that my heart beats at a rate over 100 beats per minute for most of the day and night. I can only sleep when my heart slows down enough, but even then I get woken up in the middle of the whole sleep thing when my heart rate rises. The comments on this test just pointed out that I have sustained sinus tachycardia with sinus arrhythmias (which Dr F said aren’t “real” arrhythmias). From what I’ve read this can be very dangerous.

Yesterday I got the echocardiogram data – both the resting echo and the stress echo. The report with the stress echo said that there was nothing they could find wrong with my heart, but they did at least note that my blood pressure was really low and didn’t get all that high, even when they got my heart rate up to over 180. They also noted that my resting heart rate was in the 120s. The regular echo report was more distressing to me. I think that maybe the tech who wrote the report was just trying to write what she saw without judging it, but it looked like she was saying there was nothing wrong. She noted mitral regurgitation and the machine noted tricuspid regurgitation (basically, the blood flows the wrong way through the heart, either because the valves are messed up or there is some other sort of blockage). She used the word “trace” to describe it, which makes me think that she’s saying “no big deal”. The only thing she noted that was really abnormal is that my heart is hyperdynamic with an ejection fraction (what percentage of the blood in your ventricle is pumped out with each stroke) over 75%. This is a measurement that Dr Cheney said is suggestive of left ventricular dysfunction, the idea being that the atria are working harder to compensate for the lack of filling in the ventricles. I found this chart on a website with American Heart Association articles. The illustration at the top right shows how the ratio of E-waves/A-waves indicates degrees of left ventricular dysfunction, and the measurement I had showed the my E/A ratio is 1.79. That puts me over the threshold for severe dysfunction. That means I am at risk for diastolic heart failure. I know that I have this kind of heart failure right now. Heart failure doesn’t mean you’ve had a heart attack, it just means that the heart isn’t working appropriately, failing to deliver the blood supply your body needs. What usually happens is the blood that can’t get pumped through the heart backs up into the lungs, raising blood pressure in the lungs to the point where blood leaks out and interferes with breathing. Anyone who has spent time with me recently can tell you that I have a persistent cough, which indicates the heart failure. The treatment for this kind of dysfunction depends on the reason you have it, but I don’t have any of the common causes for diastolic dysfunction (hypertension, coronary artery disease, atrial fibrillation, or diabetes). Dr Cheney said that the kind of diastolic dysfunction experienced by those of us with ME cannot be cured right now (it’s a metabolic disorder), so all we can do is support the compensatory mechanisms. The worst part of this whole thing is that once someone has exhibited signs of heart failure, prognosis is poor.

So, all right, bad news, but at least I have Dr B, who has always believed me, puts in the work to understand my condition, and can help support the compensatory mechanisms, right? Well, life just kicked me while I’m down. Due to forces beyond his or my control, Dr B is moving. Out of state. Soon. I’m going to remain a patient at his practice when he moves, but it will not be the same as having a doctor right here who can do something right away. I will have to travel to Minnesota to see him in person (which I think is important, so I’ll be doing that a few times a year). I told my Nurse Practitioner, C, about the situation, and she’s willing to step in where she can, but I get the impression from her that my condition is over her head. I appreciate when someone can admit this, but it makes life even harder for me, as if it wasn’t enough of a struggle. It took me 30 years to find a doctor who recognized that the way I am sick is not normal, understands that I am intelligent and I have good ideas, and works with me and treats me how I want to be treated. I just don’t think I have another 30 years to try again. In short, this is devastating.

Perseverance

Since I figured out what is wrong with me, I’ve been seeking confirmation. Personally, I’m sure I’m right, but I realized that there are some benefits available to me if I have an official diagnosis (i.e. I can go back to school without a mandatory attendance policy for my classes, and maybe I could record lectures or something when I am too unwell to be there). Plus, it’s important to have an official diagnosis if I ever have to change doctors – the new doctors need to understand what’s happening so they can base any treatment plans around my known conditions. It seems like such a subtle thing, but it turns out that my thyroid medicine can exacerbate pre-existing heart failure. I can’t rely on my lab values to determine how much replacement hormone I should be taking; instead, I need to stop when my heart tells me it can’t take any more.

The hardest part of this whole process was definitely in figuring out what’s wrong. Because medicine is so compartmentalized, no doctor was ever going to be able to put all of my seemingly unrelated symptoms into a single, unifying explanation. As they system stands now, I am the only one who could have figured it out. Even though the first step was the hardest, the rest of the process is still going to be quite grueling. Now I have to convince doctors that I’m right. On the bright side, I’ve already got Dr B and C on my side. They saw my research and concur that it describes me exactly. So now I have to convince a cardiologist that there is a problem. C managed to find a cardiologist nearby who specializes in diastolic dysfunction. It can take a long time (often months) to get in to see a specialist, but I got lucky (if you can call it that). Because my heart problem is interfering with breathing, they got me in as quickly as they could.

I had less than a week to prepare my case for the cardiologist. I can understand why a doctor who hasn’t met me before might not just believe me right off the top, so I decided to prepare as strong of a case as I could. I combed my file at Dr B’s office for notes he made that indicated how and when the symptoms cropped up. I asked C for a copy of any records she had. I looked through all the records and images I had taken in the last year and half, and even some from my childhood. I had to slog through still being sick, but I put in the work and I thought I had a pretty solid case for the new doctor.

Before I got in to see the cardiologist, I had another incident of the horrible chest pain. I was playing Dungeons and Dragons with my brother and sister-in-law online, and I had to stop for a few minutes to let it go away. After my experience a few years ago with going to the ER and finding nothing, I learned to just get though it and move on. However, since I was going to see the cardiologist in a few days, and since Dr B and C kept telling me I really needed to go to the ER when that happened, I decided to go. What a mistake. The ER doctor practically rolled his eyes at me when I tried to tell him what was going on, then he offered me pain medication that is known to exacerbate heart failure. Strike one. When I tried to look up the drug they offered, the nurse who did my EKG actively discouraged me from looking it up, saying that the listed side-effects and contraindications were just things that drug companies put out to keep them from getting in legal trouble. Strike two. When the doctor came back after the first round of tests (they came back negative for heart attack and pulmonary embolism, just like I said they would), he told me I had costochondritis, an inflammation of the rib joints around the breastbone. I looked this diagnosis up as well – if someone has a different reasonable explanation for what I’m feeling, I want to be open to it (otherwise I’d be a hypochondriac). What I saw, though, ruled out his diagnosis. I read on Web MD that if you press on the rib joints it will reproduce the pain, but when the doctor did that, it actually made the pain better. He still held onto the diagnosis, writing in my exit report that the pain was muscular. Strike three. If I ever have to go to an ER again, I’m going to a different one.

A couple of days later, Michael and I went to the first meeting with the cardiologist, Dr F. I barely got the first few sentences out before he informed me that I am too young for heart disease. I told him that I had plenty of family history that says otherwise, especially given that there were two sudden deaths in the family from heart disease when they were in their early 30s. I tried to tell him that I had a lot of symptoms that strongly suggest reduced cardiac output, but he shot down each one as not necessarily indicating heart disease on their own (but in the aggregate, they practically guarantee it, not that Dr F noticed). He even dismissed the findings from my other doctors last year. He informed me that the older cardiologists hear things that aren’t there and that I was unlikely to have a mitral valve prolapse.  He told me the arrhythmia that a doctor I no longer see (she was nice and believed me, but she just could never help me) found was not a “real” arrhythmia, that it was a misnomer. The doctor also asked how I came to the ME diagnosis. I explained that I figured it out myself and brought it to my other doctors, who thought this described me exactly. I could see at that moment that I lost credibility to him because it was me, not my doctors who made the diagnosis. He told me that he doubted I had diastolic dysfunction and that I probably just have a small heart, as is common with small women. I am open to my heart size being a problem, but the result is the same – my heart cannot pump enough blood to my body to meet its needs. Dr F said I just needed to exercise and make my heart stronger. He doesn’t understand that exercise makes my muscles weaker and that I pay for it inordinately – if he comes to that conclusion his treatment will do more harm than good. I have demonstrated that I have a metabolic disorder and I do not make enough energy to tolerate this.

Despite trying to talk me out of what I know to be true, he did at least order tests – a lot of them. The doctor believes that the debilitating chest pain I experienced is heartburn brought on by my allergy to gluten, so he’s sending me to a gastroenterologist (I don’t eat gluten anymore, so this is probably a waste of time). He thinks my racing heart is a neurological problem, a dysautonomia called POTS (postural orthostatic tachycardia syndrome) that basically means that when I stand up, my body can’t compensate for the effects of gravity on my blood pressure. He’s right, I do have that condition, but it doesn’t explain the rest of my symptoms, especially the similar one in which I stay in the same position, often for hours at a time, and my heart starts to race. In my case, POTS is a symptom and not the primary disease. I fear that he will confirm it with the tilt-table test and decide his job is done. He thinks my excessive fatigue is related to sleep apnea, so I’m going to do a sleep study. That should be interesting, as I have trouble sleeping when I’m not in my Tempur-Pedic bed or on my sofa in front of the TV, so I foresee getting absolutely no sleep for them to study. Most importantly, though, Dr F ordered heart specific tests.

I have already done two of the heart tests thus far: a Holter Monitor and an Echocardiogram. During both of these tests, the symptoms cropped up as if on command – I couldn’t have gotten luckier. The Holter Monitor records every heart beat in a 24-hour period, and I had the worst night I’d had in a long time while I was on it. My heart raced at random intervals so that I couldn’t sleep, and not long before the test was done, I had a severe incident where my heart rate went up to 140 while my blood pressure stayed low. During the echo, I had a similar experience. At first, my heart rate was in a normal range, in the 70s and 80s. At this point, the technician looked at my mitral valve. She was able to tell me what she saw because the doctor didn’t ask her to look at this (really? I told him another doctor confirmed it and he didn’t want to see it himself, especially because he doubted it?). To my surprise, the mitral valve prolapse was gone – I saw that this was true. I know they don’t heal, and it was seen on an echo before, so it baffled me. I looked it up on the internet later and learned that heart rate can affect how obvious the prolapse is, and since my heart was beating at a normal rate, it could hide. I wish she had looked again while my heart was racing, then we might have seen it. During the test, my heart did indeed start to race for no apparent reason. This is why I say the heart rhythm abnormality isn’t just POTS – I was lying down, not changing my position in the slightest. Just as suddenly as it started racing, my heart would return to a normal rhythm. The technician simply commented, “Well, would you look at that?” I asked if that was normal, and she could only answer that it was for the doctor to say. Stupid legal issues. The final images taken on the echo were to test for a hole in my heart. They injected saline with lots of tiny bubbles in it into a vein which would lead to my heart. When they injected the saline, it exacerbated my shortness of breath and coughing. I think this is because my heart couldn’t handle the 45-60 mL increased fluid volume. The technician also thought this was odd. In fact, she also thought it was odd that the simple act of lying down caused me to cough – she said she’d never seen that before. I have to wonder how she has not seen this common sign of congestive heart failure given she works in a cardiac ward. The technician did not strike me as stupid, so I can’t reconcile this. In any case, there was no hole in my heart, and I think that there was an opportunity for good data collection.

I saw C after my visit to the cardiologist for some unrelated issues. When she asked me how it went, I told her it was a mixed bag and that while he didn’t think I had a heart problem, he at least ran tests. C made a confused face and said that she saw my blood pressure was low (98/68) and my heart rate was fast (139) while I was in her office simply sitting on the table. She said that the resting heart rate alone implied a heart problem to her, let alone the disconnect between the heart rate and the blood pressure (blood pressure should rise with heart rate because your body is trying to increase your cardiac output. If the pressure is that low when the pulse is that high, it implies that there isn’t enough blood in the heart at that time. Given that my systolic function has been measured as working “really well”, that leaves diastolic dysfunction).

I was encouraged by C’s confusion. I left the cardiologist’s office wondering how I could have gotten it so wrong. How could I have every symptom of a disease exactly as described in the case definition and not have that disease? The people at the cardiologist’s office who took my blood pressure and scheduled my tests were also quite encouraging – they told me that if I know something’s wrong I shouldn’t let any doctor talk me out of it. These women both had experience with invisible chronic diseases, and they knew what I was up against. I think this is just about the compartmentalization of medicine getting in my way again. I have a whole body problem, and when the cardiologist sees neurological symptoms, he immediately assumes it’s not his problem. The thing is, I think the problem is neurocardiac (both heart and nerve related). The problems feed each other and make each other worse. If the doctor doesn’t know about both fields, I can see how he might not understand the disease. But just because he doesn’t understand it doesn’t mean I’m wrong.

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!