The Autoimmune Disease Conference

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

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

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

The immune system can be broken down into three layers.

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

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

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

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

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

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

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

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

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

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

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

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!

Trying Again

Remember when I started this (the second half of the post)? Yeah, I’m doing that again. Started this morning. I’m hoping to figure out what the new food allergy is that makes me break out in rashes and have random bouts of diarrhea. It’s going to be much the same process as the first time, except I will be able to keep butter and tomatoes in the diet. I am certain these aren’t a problem. All other dairy, grains, and potentially inflammatory meats and nuts are out. On the bright side, I am going to be home the whole time I’m on this diet. It’s a good thing, because eating out while trying to strictly control my diet is really hard. Not impossible, just hard.

In the meantime, I have a lot of knitting to do. I’ve got 3 expected babies to knit for, plus a few projects for friends who want or need something specific. Later this week I’ll put up a list of what I have in progress, plus the list of things I plan to cast on. I am thinking I need to make something to wear on the cruise I plan to take in August. It will be Michael’s and my 10th anniversary this year, so it will be nice to cruise even if I am not much better and not really up to it. I mean, there’s food and a bed on board – what else could I need?

As for the past month, I actually accomplished a few things. The biggest is that I caught up on my newspaper comics. Somehow, it’s nice to only have one day’s worth of comics waiting for me in the morning. I eat breakfast and read the paper, and when I’ve finished, there isn’t a giant stack still waiting for me. It’s just nice to feel caught up.

I also discovered a new treatment that seems to help.  I went to see a chiropractor who uses an acupuncture technique called NAET. When I walked in to her office, I was up front with the doctor. I told her I thought that this was just voodoo and I was only there to say I had tried it. The doctor was very good about the whole thing. She said that it was all right I felt that way, let’s just try it and see if it does anything. She said it works for some and not for others. Given that she was so laid back about the whole thing, I agreed to give her a shot.

Well, the three days after my first treatment were the best I’ve had in about a year and a half. I went back on the fourth day having regressed almost to the point where I was before the treatment, but feeling optimistic that a second treatment might produce the same results. In fact, it did work. I am by no means all cured – far from it. The difference is that I wake up in the morning feeling kind of crappy, I have a glass of tea, then have up to four hours of clear thinking and productivity. I can only do light housework and tasks like reading, but for those few hours, these activities are no longer a complete struggle. It’s improvement, so I’ll take it. As of today we’ve only worked on treating my autonomic nervous system imbalance, so I’ll be interested to see what happens when we actually start trying to clear food allergies.

Unfortunately, I seem to be out of focus for today. I plan on writing more over the course of the next few weeks, especially regarding the cleanse diet. I may need some moral support as it drags on – eating carefully is hard work!

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>

Something Has Changed Within Me

I returned my kittens today. I’m hoping this is just a short break, but I’ve learned that sometimes my breaks are longer than I’d like. The shelter has plenty of kittens in need of fostering right now, so I have hope that as soon as I am ready, there will be more of them.

The reason I am not taking more kittens right now is that I have a medical procedure coming up soon. On Thursday, I’m having a probe inserted for an Impedance Study. The idea is that they are going to measure reflux from my stomach into my esophagus (because my cardiologist believes that my chest pain is esophageal rather than cardiac). Originally, I didn’t want to do any of the gastroenterology tests. They are all invasive to some degree, two of them involve going back to eating gluten, and two of them involve general anesthesia (although they can be done together). My concern is two-fold: gluten is now thought to cause nervous system damage, and general anesthesia isn’t recommended unless absolutely necessary for someone who has nervous system damage, particularly if it’s the autonomic nervous system. I was just officially diagnosed with an autonomic nervous system disorder, so it just seems too dangerous to do these tests.

Despite me telling the scheduling people at the hospital that I wanted to put these tests on hold until some of my other studies have been completed, they started calling me at least every other day to request I schedule the tests. The first time, they caught me home alone and managed to convince me to at least schedule the Impedance Study. I justified it to myself (after the fact) by pointing out that doing at least one of these tests might prove to the cardiologist that my chest pain really isn’t esophageal in origin. This one only involves a numbing spray in my nose and 24 hours of wearing a probe (which I don’t imagine will be comfortable). If I am honest, I still have reservations about doing even this one. I’ve never complained of heart-burn, so why would this even be a consideration? I told them that removing gluten has solved most of my digestive issues. So why should I subject myself to this?

I have no good answer. I have some answers, but they definitely point to a weak character. I’m more and more certain by the day that I know exactly what is wrong with me, and now I’m really just looking for proof. There is a part of me that wants to be open to the idea that I am wrong, though, because if I can’t be talked out of the idea that something is wrong with me, well, that’s the definition of hypochondria. On the other hand, I’ve been told by more and more people (except for medical doctors) that if I think something’s wrong, and if I think the doctors have been missing something, then I shouldn’t stop until someone sees what I see, or can at least explain to me why I’m wrong in a way that satisfies me. It’s just that I grew up in a world in which the doctor is in a paternal role, and I feel like a naughty child challenging the doctor. I practically hear the parent voice in my head, “Don’t you back-sass me!”

On some level, I’ve been a bit demoralized, too. The sleep doctor scheduled several tests for me, including  an actigraph and a sleep study. He believes, however, that I am really suffering from a form of bipolar disorder that manifests as a sleep disorder. Here’s the thing – I have insomnia when I am taking too much thyroid hormone (defined by my heart racing all the time), and I have hypersomnia when I am hypothyroid (the only condition in which my heart stops the incessant racing). I don’t think he believes that there is a direct causal relationship. To reduce what I am going through to what is essentially a psychiatric diagnosis brings me right back to the “you’re not sick, it’s in your head” place. I think the actigraph is stupid, but it just involves wearing what amounts to a prison monitor an expensive watch for two weeks. The sleep study upsets me though, because they are taking me out of my regular environment and trying to make me sleep during specific hours, during which I may or may not be able to actually do so. They are going to stick electrodes all over me and measure brain waves while I (theoretically) sleep. They are also checking for sleep apnea (I’ve never even been accused of snoring, let alone waking up gasping for air…). Tell me, what is scientific about changing a person’s circumstances entirely and measuring what you find?

Throughout all of this, I’ve taken to trying to understand the current state of our medical system. I’m trying not to become a conspiracy theorist (although my husband might tell you that I am overly suspicious), but I have taken the time to read other people’s views of what is right an what is wrong with our medical system. Here are my thoughts in list form (and in no particular order):

• On the physician level, I think most doctors at least go into the field with a general desire to help people.
• The training that (specifically) doctors get, may not be coming from the best place. Med schools are funded by pharmaceutical companies, who essentially want to train these people to prescribe drugs.
• The pharmaceutical companies have very little interest in cures. They keep making money if you keep needing their drugs. Sometimes, you need drugs to counteract the side effects of other drugs you are taking. And usually the original drug is prescribed before any other diet or lifestyle changes that could actually reverse disease are even attempted.
• A lot of pharmaceuticals cause more harm than good. Avandia. Darvocet. Yaz. I’ve been on all these drugs. Two have been removed from the market, and one is under investigation for serious side effects. Drugs have to be proved dangerous to be removed from the market, rather than proved to be safe in the long-term before being released to the market. Pharmaceutical companies often suppress research that suggests their drugs are dangerous or ineffective.
• On the other hand, some pharmaceuticals really do save lives. Antibiotics, used conservatively, have certainly been helpful. Their overuse, however, has created untreatable infections.
• Vaccines are highly touted, even mandated, but there is little regard for the fact that some people cannot tolerate them. In addition, vaccines contain aluminum and mercury, known neurotoxins. The only reason for this consequences-be-damned push is profit. I’m not sure that I think vaccines do more harm than good, but I do believe that they should be a choice and that they should be used more judiciously.
• Doctors are paid for prescribing more procedures and drugs, rather than for their time (there is an office visit fee, but it is a much smaller portion of their income). Maybe that’s why they prescribe what I consider “stupid” tests?
• The average doctor interrupts the patient in 14 seconds. That suggests to me that the “average doctor” is more interested in getting you out the door than in figuring out what is really wrong with you.
• Many whole body diseases are missed or even dismissed because of all the specialization in medicine. The over-reliance on technology also gets in the way of a good old-fashioned diagnosis.
• I don’t think patients are given enough information to be able to make true “informed consent.” For example, did you know that birth control pills raise the cortisol levels in your body similarly to how steroids do? I didn’t either until I noticed that LabCorps listed this under the limitations of their blood test for cortisol. Long-term steroid use has bad consequences we should be aware of (especially immune consequences). Synthroid’s literature says that you should not use their product if you have an uncorrected adrenal problem, but no doctor (not even an endocrinologist) has ever mentioned this bit to me. I’m honestly not sure if most of them know. The contraindications show up on page one of the literature, starting near the bottom left (the font is microscopic, so zoom in). In this section, they mention that doctors need to pay attention to more than just TSH levels (T4 and T3, specifically), but only recently has a medical practitioner done this for me. Plus, wow, they discuss the relationship of thyroid hormone and heart disease a lot. Also, something I had to find out on my own.

All the above thoughts led me to feel a lot less trusting of the system. I found that I feel like one of a herd of cattle in the waiting room, especially at the hospital. I feel like no one is going to give me more than a cursory glance unless I start complaining – loudly. Even when someone is compelled to look again, I feel like the treatments and tests are ordered dispassionately, without regard to how they might affect me as a person, with all my quirks and unique history.

As I’ve spoken about these things to other people, I’ve started to feel angry. I started to think, “How dare any doctor suggest this is in my head after spending only a few minutes with me. They don’t know me. They can’t possibly know that.” I started to feel like I need to say “no” to more of these tests – the risks may just be theoretical for the prescribing doctors, but they are very real to me. I need to learn to feel less guilty when I find more relief with alternative medicine than with the pharmaceutical-driven one (many medical doctors and occasional strangers try to derisively tell me that the alternative care is at best placebo, when I can say for certain that it isn’t). I’m more educated than most, and I need to act like it.

I just feel it’s tough to be assertive when you’re trying to gain the cooperation of someone who holds the hammer on whether you will get the medicine or diagnosis you need. Being labeled “non-compliant” is devastating for someone with chronic disease, and a doctor can make your life very difficult by labeling you that way. They can tell you that you don’t feel better because you didn’t listen to their advice. They can deny more testing on that basis.

It’s a delicate balance, for sure, but I’m feeling quite motivated these days to figure it out. I’m just really tired of being sick.

I Just Know

I went to Dr F (the cardiologist) again today. I completed all the tests he ordered except the tilt-table test to check for POTS. I bought books on interpreting EKGs, I read articles on how to interpret what I read on my echocardiogram… I really worked hard on understanding what was going on with my heart. From what I saw, I was sure that I was right about the heart problem. I figured the doctor would say that there were some abnormalities and maybe he just wanted to wait and see. I didn’t think he’d jump all over a diagnosis of diastolic dysfunction, but I thought the tests might raise some suspicions.

I was wrong.

Not about the heart problem – I was wrong about the doctor seeing it. He cheerfully informed me that I had had wonderful test results, and that his other patients would “literally” (I hate when someone says literally when they mean figuratively) die to have my echo results. I was shocked into silence.

I have always worried that I know just enough to get me into trouble. I am under no illusion that I am a doctor. I am open to the idea that I just don’t know how to read the results of these tests. Despite all of that, I have a gut feeling that just this once I’ve gotten it right, but I can’t make the doctor see it.

Before making my case, I’d like to point you to a TED talk by Abraham Verghese.

Dr Verghese makes so many wonderful points, but for the purpose of my argument, I want to focus on his point regarding testing. He states (half-jokingly) that if someone came into his hospital missing a limb, no one would believe it until they get a CAT scan, MRI or orthopedic consult.

I came to my current cardiologist six weeks ago with my recent revelation that I have a problem with my heart. I had barely gotten started making my case when he interrupted, telling me that I was too young to have heart disease, and then he started referring me to all sorts of other specialists. We were interrupted so many times that I was unable to describe the main symptoms that make me think I have a heart problem. I managed to ask Dr F if he had heard of the work of Dr Paul Cheney (he had not). I managed to tell him that my blood pressure is too low, and my heart races. I tried to tell him that my thyroid medication is what makes my heart race, and that when my heart races I can’t breathe. I repeatedly coughed and gasped for breath during this appointment.

A few weeks later I got a written summary of the visit. He repeatedly called me “delightful” throughout the report. He noted that I had a strong family history of heart disease at an early age. He noted my diganoses of Hashimoto’s disease, allergy to gluten, PCOS, hypoglycemia, CFS/ME, and dysesthesia (a fancy word for numbness) of the face. Nowhere in this report did he mention the cough or gasping for air.

Since I saw Dr F the first time, I backed off and eventually stopped taking all of my thyroid medication. The cough and tachycardia all but disappeared (if I had caffeine or stood up too quickly or for too long, the tachycardia returned with the cough on it’s heels). As I am reintroducing the medication at a lower dose, the symptoms are coming back. Definite causal relationship there.

Today, when I came back to Dr F and he gave his pronouncement that I was healthy on paper, Michael and I were prepared to challenge his thought process. We had concerns about the Holter Monitor report.

“You only had two heartbeats that were irregular, but that is totally normal,” said Dr F. I completely agreed with this point.

“But how do you explain the tachycardia, so often during the day,” Michael asked.

“Well, the average heart rate is 88, which is a little high, but nothing to worry about. Exercise will fix that. Besides, heart rate can vary depending on your activity level.” Has he missed the point I made last time about how I pay inordinately for a small amount of exercise?

“But Barbara is sedentary, and her heart rate got up to 172… how do you explain that?”

“Well, it depends on sensory input. For example, if you’re watching a scary movie, it can make the heart rate increase.”

“What if that doesn’t apply?”

“It’s nothing to be concerned about.”

“But how do you explain the fact that Barbara’s cough correlates with the tachycardia?”

“I don’t know.”

I then brought up my concerns about the findings on the echocardiogram.

“I noticed that my ejection fraction was 75%, and the report calls my heart hyperdynamic.” I learned from Dr Cheney’s lecture that the heart can compensate in the systolic phase for a lack of diastolic filling by simply pumping more of the total volume out with each stroke.

“That’s not a problem,” replied Dr F.

“Well, I also noticed that my E/A ratio was 1.79. I understand that the normal range is 1.0 -1.5. Isn’t this a concern?”

“You’re the first patient I’ve ever had ask about the E/A ratio. This ratio varies with age, and in young people it can be over 2 and they don’t have any problems. Really, it’s no big deal. Listen, be careful about looking at these numbers in isolation. When I was in med school, we did echos on each other and by the time we were done we were all convinced that we had serious heart problems. The next day when we came back, we learned how to interpret the results and they turned out to be nothing. We were all fine.”

I didn’t even bother to mention my concerns about the end-diastolic and end-systolic volumes being below the normal range. He’d just try to tell me they are also of no concern.

I later thought about Dr F’s comments on the echos done in med school. These tests were performed on people who had no symptoms. Sure, in the absence of symptoms, abnormal findings can be benign. I think, though, in the presence of symptoms, they should be taken much more seriously.

I feel this illustrates the point Dr Verghese made in his talk. I have symptoms of heart failure – a cough that occurs when my heart rate rises, when I lie down, and when I exert myself. I had chest pain that another cardiologist called angina. My resting heart rate is way too high on occasion, and even on average it’s a bit too high (my book on interpreting EKGs says that sinus tachycardia, the kind I have, should never be ignored because it’s often the first sign of left-sided, or diastolic heart failure). The doctor has dismissed these signs and symptoms in favor of tests that show some results that are not severe enough to mean I am in serious trouble, but they are nonetheless abnormal. I think this doctor is missing an obvious diagnosis because he is more concerned about the patient in the computer than the one right in front of him.

I never thought I was in imminent danger of having a heart attack, but I do think there is just enough dysfunction in my heart to be causing the symptoms that are currently wrecking my life. All I ever wanted from this guy was recognition that this is so. I’ve done my homework – I know that it can’t be cured, only managed. I’m fine with that. But to deny there is a problem at all, this is a mistake.

I am hesitant to second guess a professional, especially a doctor. I know, however, that doctors aren’t always right. I had a broken ACL when I was in high school. The orthopedic surgeon did an MRI and tested the range of motion in my knee, but he did not feel that my ACL was actually broken. In the end he agreed to do exploratory surgery, and if the ACL was indeed broken, he’d repair it. When I woke up in the recovery room, he informed me that, wouldn’t you know it, the ACL was torn and needed to be repaired. I simply said, “I told you so.” And just like with my ACL, I’m certain my heart is broken. I just know.

Knitting Break

I need a break from my life right now. My health is my life, and I just need some time to not think about it. Easier said than done, I’m aware, but I want more in my life than doctors appointments and disease/treatment research.

For several weeks now, I’ve had foster kittens. I haven’t had the energy to post about them, and Michael has been involved in most of their care, but they’ve been here. In order, we have Caylus, Collete, Demi, and Raven.

The kittens have been really healthy, and all of them are about as sweet and affectionate as you could want.

I’ve also done some knitting. I have several projects with deadlines, so I’ve been focused on them. First, I made a hat and mittens for my friend Vickie’s expected baby. I might make some booties to go with these – I haven’t decided yet. I want something the baby can wear right out of the hospital first, then I’ll see if I can make something that she can wear as she grows a bit.

I’m also working on a “yarn shirt” for my niece Alexis to wear at Christmas. A few years ago, when I was living in San Francisco, I taught Alexis to knit. We later went walking past a yarn store, and Alexis got incredibly excited when she saw a sweater in the window – “That’s a yarn shirt!” We managed to get together again later on, and Alexis informed me that I need to knit her a sweater. I love that she wanted something made by me, so I’ve finally gotten on it. I intend to give it to her as a Christmas present. I’m also going to make a sweater for her brother, but that hasn’t been started yet.

The pattern is a DROPS pattern, labeled s15-7. I’m knitting it in O-wool Balance, pink and green. I’ve made a few modifications, most notably that I am knitting it in stockinette rather than reverse stockinette. I’ve never really liked the reverse stockinette stitch as the public side of a garment, so there you have it. I’m hoping the sweater comes out a little big so she can wear it for a relatively long time, but we’ll just have to see.

I don’t have the focus to knit as much as I’d like, and I had to abandon a shawl I was designing, but I’ll get back to it. At least I hope.

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.