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.

On the Same Page

Finally, there is someone in the medical field who was able to find something wrong with me. I had a tilt-table test on Wednesday, and the Nurse Practitioner who conducted the test said to me, “You definitely have POTS, but you aren’t the typical POTS patient. I think in your case, POTS is a symptom of a bigger disease.” She pointed out that the cough I have with the increased heart rate is not part of POTS. I told her what I thought about the heart problem, how when my heart beats too fast I thought I was developing a problem refilling my heart and it was backing up into my lungs. She asked for further details about how it felt. “Like I’m drowning,” I told her. She told me that she thought my theory was plausible, and agreed to tell the cardiologist that she felt like my POTS is not the primary disease. He has more work to do. In the meantime, I’m planning to send my test results to another cardiologist whom a friend of mine works for so I can get a second opinion.

A tilt-table test is exactly what it sounds like. They had me lie down on a metal table and hooked me up to an EKG, a pulse oximeter, and a blood pressure cuff. After dimming the lights and having me rest for 10 minutes, they tilted the table 70 degrees and had me stand there for 20 minutes. Every two minutes they checked my blood pressure and noted my pulse. It was that simple.

In order to be diagnosed with POTS, when you are tilted upright, your pulse must increase to either 120 beats per minute (bpm) or it must go up at least 30 bpm from the resting rate. I started with a resting rate of 60-70bpm, and when I was tilted upright, I went up to 130-140. My heart rate increased at least 70 bpm, and I topped out at 160. I unequivocally met the criteria for POTS.

Getting a diagnosis is both a relief and an obstacle. The NP (she is also C, so I’ll call her CK to differentiate her from my regular, family practice NP, CM) gave me a warning after she gave me the POTS diagnosis. She said that when I talk to doctors, they are going to try to blame everything on the POTS. More tired than usual? That’s just your POTS. A new food allergy? That’s just your POTS. A limb fell off? That’s just your POTS. I jest (at least with the last one), but she has an excellent point. For years I’ve been told that all of my symptoms are about my thyroid, and they clearly weren’t. They were also about my gluten allergy and POTS, and whatever else is wrong with me. Even though the POTS explains some of my symptoms, it doesn’t explain them all. The trick is to get the doctors to understand that and keep looking for the cause. This is why it was important that CK emphasized that POTS was just a symptom to the cardiologist. He thinks it’s my primary disease.

The quest to get me feeling better is far from over. The website I linked to in the beginning notes that it is important to find the cause of POTS because many of those conditions can be treated. The website lists several possible causes, and we’ll be investigating many of them – at least now we have some clear guidelines about where to look. In the meantime, we’ll treat the symptoms as best we can. As much as I would prefer to have the answer right now, I understand that it will take time. I guess all I can ask for is patience. Good thing I’m a knitter – I have something I can do while I’m waiting.

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.