A Step Forward

I think I’ve hit that sweet spot today where I don’t have enough energy to engage in hard core work, but I have just enough energy to blog. This is good, because I’ve wanted to do this for some time now.

Let’s lead with the good news – Dr M has managed to help me affect one of the biggest problems that has been plaguing me for at least twenty years! Normally my sleep schedule goes around the clock in a cycle so rare that it almost exclusively occurs in blind people. Over the Christmas holidays when my brother and his family came to visit, I was able to wake up naturally between 6-8am every day. This is huge!! It’s something I’ve wanted to be true for many, many years.

I am not entirely sure what started this effect, but I know that I have to take melatonin (a sublingual form – this matters a lot) every night to keep it happening. If I skip, I can’t fall asleep. The melatonin wasn’t working much at first – it helped the sleep I did get to be more restful, but it didn’t help me fall asleep. Now, it also helps me get to sleep. All I can tell you is that I was taking a supplement regimen not unlike the ones that Dr B had me on a few years ago, but it kept making my head burn like soy does and it sapped all of my energy. I stopped taking the supplements one by one, and when I stopped entirely, my sleep schedule snapped into a normal cycle for weeks on end! I couldn’t believe it! The only catch (and there always is one) is that I traded poor quality and poorly timed sleep for constant pain that ranges from moderate to blinding.

Given that I had this fortuitous turn of events, I was able to have a really great Christmas with my brother and his family. We went to the candy factory, the tea factory, yarn shops, Julie’s house… I mean, we really got out and around. I missed out on a couple of events, but in part it had to do with other scheduling issues. I was glad for the breaks when I got them, but I was ok. And I didn’t even have to resort to pseudoephedrine except on the first day they were here (and I hadn’t quite quit all the supplements).

I had two bad days since they left, and I think those were about low potassium. I woke up on both of those days unable to move (kind of a hard feeling to describe, but my blood felt like molasses and I couldn’t quite wake up, like I was drugged), so I slept till noon. Today was rough, too, but I expected it. I decided over the weekend that it was really not working for me to have parts of my business on three levels of the house. I do the actual work on the main level, but my supplies and stock lived in the basement. My computer (where I edit photos and put up listings) lived upstairs. Discounting the efficiency issue, I realized I just couldn’t take that many stairs in a day. I had to leave things out overnight or longer, and it really bothered me. So, Michael and I switched offices.

Part of switching offices meant that I had to get new furniture to store my stock and raw materials. The cats LOVE my wool. I’ve even caught Duck sleeping in the basket I keep current spinning projects in. I can’t blame him – I’d want to sleep in a box of wool if I could as well. I can’t have cats appropriating my products for their own use, so the wool has to be behind closed doors. This meant a trip to Ikea (by myself – a huge mistake, given that two of the boxes were 56 pounds each) and furniture assembly. I only got one wool cabinet assembled before I was absolutely too fatigued to do one more thing. Overdoing it yesterday meant that today would be pretty unproductive. I did a little dying (just one load of wool and sock yarn for a project I’m making for a friend) and I spent the day on the computer, but mostly not working. I also watched tv and knit on a pair of socks I’m making for Michael. Also, I slept in till 9:00 this morning. 😦

I managed to get a few good shots from my visit with the family. This is me teaching Alexis to dye:

Alexis Dye1Alexis Dye2Alexis Dye3

And these are the rovings she made. I’m planning to give her some of the profits from the sales. Alexis did the work after all, and I think this would be a great learning experience for her!

These are some shots of the kids decorating the tree:

Christmas 2012 a Christmas 2012 b Christmas 2012 c Christmas 2012 d Christmas 2012 e Christmas 2012 f Christmas 2012 g Christmas 2012 h Christmas 2012

And a few of Christmas itself!

presents 2012 presents 2012a presents 2012b presents 2012c presents 2012d presents 2012e

In everyone’s defense, it was 5:00 in the morning when these pictures were taken. If we look a little ragged, well, that’s why. We all had naps and looked like movie stars later. Or at least, I’m pretending that’s what’s true (I look how I look – if you don’t like it, you don’t have to look at it).

Finally, I have a few shots of the kids helping me make a custom order for Kitty Mine Crafts (I think you’ll find this familiar, Sara!) They loved working with the drum carder (but we made it clear this was a supervision only activity – the teeth on the licker are sharp!!!).

drumcarder kids drumcarder kids2

One last thing – while they were here, my sister-in-law wanted to learn more about how to shop and prepare food when you live gluten-free. They are trying to make the transition, and since I have to live that way, they got to see what I do to get by. I also introduced them to some recipes (most of which were well received by the adults) that they are planning to use at home. I promised Alicia that I would publish a recipe for a pot roast I made earlier this week, so here it is:

Ingredients –

  • approximately 4lbs chuck roast
  • 1 box Imagine Organic vegetable stock
  • 1/4 bottle of red wine (I used the leftover Ravenswood Old Vine Zinfandel)
  • 1 tsp garlic salt and parsley mixed
  • 3 celery stalks, chopped into bite-sized pieces
  • Two fistfulls of baby carrots

Instructions –

  1. In a large pot, pour in some olive oil (lightly cover the bottom of the pot) and brown the roast on all sides.
  2. Put the stock, wine, and garlic salt in the slow cooker. Set the heat to low.
  3. Add the meat.
  4. Let cook 4 hours, then add the celery.
  5. Let cook 2 more hours, then add carrots.
  6. Let cook at least another hour, then serve (you can leave it in for another two hours if you want).

The meat was fall-apart soft when we ate it. Also, I made this from whatever I could find in my pantry and kitchen. I recommend that you use some sort of aromatic (onions and the like) if you don’t have celery, and most root veggies can be substituted for the carrots to different effect. I don’t recommend potatoes if you’re trying to keep your glycemic index low, but to each his own. What I will say to everyone is that my sister-in-law announced that she lost 5 pounds over the holidays eating like I do. Yes – lost, not gained. Over the holidays. And she’s keeping it off. I’m proud of her!

That’s all for now. I hope to write again soon!


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.