Not long after I woke up, I took a little pseudoephedrine. I hate to do that, especially in light of my decision to indulge the above superstition, but I figured I could just keep in mind that I’ve been popping large numbers of pills every day for the last year and a half, and smaller numbers for the previous 11 years. This isn’t really anything new. It’s not just the pill popping that I was reluctant to do, though. It’s dangerous to use pseudoephedrine for the long-term, but it is used off-label to promote wakefulness. It was my backup plan for when I really wanted to participate in something, like a vacation or what have you. I made my peace with it, as long as I only use it as needed, for short periods of time only. Besides, I’m already taking medication to increase neurotransmitters in my body (pseudoephedrine increases norepinephrine concentrations by releasing what you have stored in your neurons). I went to see C a few days ago, and she said that neurotransmitters are the best way to treat the neurological pain I was having. She even used the dreaded f-word, “fibromyalgia” to describe what my pain sounded like. She hasn’t officially diagnosed me with that condition, but it often comes with CFS/ME. While I wasn’t surprised to hear her say it, I didn’t want to hear it. Treatment for fibromyalgia is palliative (meant to relieve suffering, but not cure the condition) at best.

Anyway, I decided to spend the day accomplishing things. The feeling of being able to just do what I need to do is the thing I miss the most since getting sick. When I have a good day, I tend to squeeze every bit of productivity out of myself I can. I was determined for this to be that sort of day. I first washed all of the wine glasses from our party the night before. I did a couple of loads of laundry. I fed all the animals. I took a hot bath. I caught up some of my newspaper comics. I should explain that last one – Michael and I are the last newspaper subscribers on the planet. We both love newspaper comics, and there’s nothing like sitting down with the newspaper and reading the good ol’ funny pages. Well, because some days my brain is so foggy, so scrambled that I can’t even read, Michael saves that comic pages for me so that I can get to them when my mind is clearer. As of this morning, I was backed up to the beginning of October. Today, I read the entire month and am now up to November. Still behind, but less so than before. I went through older blog posts today, and learned by this time in 2010, I was behind as far as August. Back then, I had a billion kittens to care for as well. I’m certain this is not coincidental.

By noon, I was tired. I thought about popping another pill, but decided that there was really no way I was going to sleep for more than an hour or two. I had Michael massage my neck and ridiculously painful shoulder, then settled in for the nap. Feeling slightly more refreshed, I rolled over and looked at my clock – it was nearly 10:00pm. My nap was 10 hours long. What a defeat.

I tried not to be too upset about this. I told myself this morning that I was going to focus on the things that I did manage to do, and try not to condemn myself for what I couldn’t do. You see, somehow I still haven’t accepted that I’m truly, honestly sick. I keep trying to convince myself that if I just talk myself into it, I can just magically overcome this whole thing. Maybe I am prone to superstition after all. I mean, this is the behavior that I hate most in others: the tendency to accuse the people who have a chronic disease of not wanting to get over the illness, thus implying the disease is in the sufferer’s head and it is her fault. I do not think this of others who have a chronic condition, but somehow I think it of myself.

I think it will help me to show you some of things I’ve accomplished in the last few months. Much of my knitting has been for Christmas presents, so I haven’t really been willing to post it on the internet. Now that the gifts have been given (mostly, at any rate), I’ll show them to you.

I made these for Dr B. He lives far away now, but since we still talk, I thought it was only a nice thing to do. These are the brioche hat and scarf from Weekend Knitting. The yarn is Berroco Vintage in Mocha and Mushroom (5103, 5104).

I also made the pair of socks I referred to in the previous post for Dr B’s wife, K. She promised me she would get a picture of her wearing them so I could post it online.

I finished a dress I was crocheting for my friend Julie’s baby. This has not been delivered yet because her family is spending Christmas in Denmark. Plus, it’s still missing buttons. The pattern is Dixie Belle, and I used Patons silk bamboo (ivory) and Artfibers Casanova (dark purple).

I made this sweater for my nephew, Blaine. His parents tell me he loves it. The pattern is Lion Brand’s “Knit Coastal Stripe Pullover” in Knit Picks Swish Worsted, colors Twilight. Doe, and Bark.

I sent the “yarn shirt” to Alexis as well. It is bigger on her than Blaine’s sweater is on him, but she’ll be able to wear it forever. She was ecstatic, if the pictures her parents sent me of her opening the present are telling me the truth.

I plan to knit one more small present for Julie, but I don’t want to mention what it is until she receives it. She knew about the dress for her baby. I also have the “puerperium cardigan” (Ravelry link) on the needles for my friend Vickie‘s new baby, and I’ve swatched for the “Color Me” afghan for my friend Jen’s new baby.

There is a catch to the projects on my hooks and needles. I mentioned ridiculous shoulder pain earlier. On New Year’s Eve, the pain in my right arm got really bad, to the point where I was having trouble lifting my arm to give my friend a high-five. I thought it would be just a one day thing, something brought on by the fact that I skipped a dose of the pain medication so I could stay awake (the medication wipes me out – if I take two pills in a day, I can sleep about 18 hours easily). I resumed taking my pain medication as soon as everyone went home, but the pain is still there. I think I’m on track to losing much of the use of my right arm. I’ll know Wednesday whether the decision regarding if and when I have to give up bowling has been made for me. My concern is that this might mean I lose knitting, too. Maybe I can outrun it, get my projects done before my arm gives out. I can do that, right?

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.

Filed under: Health, knit, knitting, yarn Tagged: CFS/ME, chronic fatigue syndrome, chronic illness, health, knit, knitting, myalgic encephalomyelitis, yarn ]]> http://knittinandkittens.wordpress.com/2011/11/13/a-tangled-skein/feed/ 0 tickleslordchaos tangled skein http://knittinandkittens.wordpress.com/2011/10/31/a-dark-age/ http://knittinandkittens.wordpress.com/2011/10/31/a-dark-age/#comments Mon, 31 Oct 2011 07:45:10 +0000 tickleslordchaos http://knittinandkittens.wordpress.com/?p=2737 ]]> 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.

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>

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.

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 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.

Filed under: Health Tagged: abraham verghese, echocardiogram, health, heart disease, heart failure, heart problem, tilt table test ]]> http://knittinandkittens.wordpress.com/2011/10/04/i-just-know/feed/ 0 tickleslordchaos http://knittinandkittens.wordpress.com/2011/09/27/knitting-break/ http://knittinandkittens.wordpress.com/2011/09/27/knitting-break/#comments Tue, 27 Sep 2011 22:27:57 +0000 tickleslordchaos http://knittinandkittens.wordpress.com/?p=2667 ]]> 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.

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

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

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

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

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.