What doctors learn from us

April 19, 2015

Most of my doctors work at one of Boston’s teaching hospitals, so I sometimes have a student or intern in the room during my appointments. This past year, there was a fellow, Dr. N, working with the doctor who I see for my sleep problems. The fellow has been really great, and I’m sad that he’s leaving in June when the fellowship ends. Before he leaves for an exciting new position, I wanted to tell him how great he’s been. But he beat me to it!

At my last appointment, I pointed out that I probably wouldn’t see him again, and he looked sad and reached out to shake my hand. Then he said, “I’ve learned a lot from you.” I was completely shocked. He was being very sincere. I could tell that he really meant it, that he had learned a lot from me. I was truly touched.

I hadn’t thought much about him learning from me. I had been thinking about all I wanted to say to him about what a great doctor he is. I still told him, and I gave him specific examples. I asked that he try not to lose his enthusiasm and caring over time.* He blushed deeply and said he wouldn’t. I hope what I said sticks with him. What he said sure sticks with me. But in that moment, as I was thinking about what I wanted to say to him, I was caught off guard and didn’t know how to respond to his statement. Now I’ve had some time to consider it.

I try hard to convince doctors to be open-minded and understanding, but I forgot what an impression I might make on doctors who are completely new to the field. With Dr. N, it wasn’t just about open-mindedness and understanding. That was part of it, but I think I showed him what a chronic illness patient really looks like. I’m guessing he hadn’t seen many yet, and probably few like me who are so proactive no-nonsense. He saw my resilience and determination. He also saw my fear and anxiety. He heard me say I was willing to try anything, but push hard to prioritize non-pharmaceutical options. He saw me work incredibly hard and try many options, even the ones I clearly disliked or feared. He received many emails from me as I tried to improve my health, emails that were always short, to the point, and respectful. He saw me struggling to stay awake in appointments while trying to joke and keep the atmosphere friendly. He heard me state my symptoms methodically, without complaining about them. He heard me emphasize the disabling aspect of my symptoms in an effort to be taken seriously, even when no one expressed doubt, and I’d like to think he understood why I felt the need to do that. In a short time, he saw and heard so much.

I don’t know what exactly Dr. N meant when he said he’d learned a lot from me. I can only guess. But I would like to think that at least one new doctor now understands more about what chronic illness patients deal with, and will show them the compassion and understanding that we all deserve.

*Note: Dr. N really was fantastic. He went out of his way to do everything he could to improve my health. On top of his magnificent efforts and attitude, he was also very knowledgeable without being arrogant. I hope he goes on to be the amazing doctor that I suspect he’ll be.


Thank you – I’m touched!

April 1, 2015

I just want to say a quick thank you to Tamara, Jackie, and whoever else nominated me for this award! I can’t tell you how much it means to me. I didn’t want to say anything during voting because I’m not thanking you in order to get extra attention. I just honestly don’t know how best to reach the anonymous person who nominated me. So thank you!


Always rethinking goals

March 27, 2015

I had a plan. Then I got sick.

But then, you know what they say about the best laid plans.

This morning I was talking with a friend. Sometimes I do some budget consulting. I don’t have the energy to do much of 3-27-2015 4-01-42 PMit, but I love it, and do it when I can. I always begin with discussing the person’s/couple’s goals. These goals can be anything: buying a house, buying a smart phone, getting a dog, having children, traveling the world, starting a business, retiring young…. there are endless possibilities.

Today I happened to be working with a friend, so it was more casual than when I get paid by strangers to consult for them. After we’d gone through her goals, her spending, her debt, her income, and her savings, we talked some more about goals. And she asked me about mine.

Most people assume my goal is to get healthy, but it’s actually not. I know I’ll never be completely healthy, and I also know I want more than that.

We all had plans that were different when we were healthier. Some got derailed because of health, some got derailed for other reasons, and some were achieved. After my friend left, I thought again about my goals. I think the most unusual thing about them is how often I think about them and change them. Most people, I would guess, hardly ever step back to look at the bigger picture. They assume they’ll do the things society tells them to do, like get a job, get married, buy a house, and have children, probably in that order. But they don’t think beyond that. I know I didn’t. In fact, that’s about what my life plan looked like.

Just before I got sick, I started thinking about leaving my 9-5 job and starting my own business. I didn’t know what that would be. I thought I might try to earn a living off of blogging (spoiler alert: this blog is 4 years old and earns nothing, so that won’t be how I earn my fortune.) I considered some other options. I dated and looked for Mr. or Ms. Right. And mostly I put one foot in front of the other.

Since I’ve been out of work, I am constantly thinking about the present and the future, about what I want and how to achieve it. I change it constantly, as my health and moods change. I’ve come up with several potential ways to work for myself from home part time. I know that I want a dog. I want to improve my health as much as possible while not being obsessed with it. I want a dog. I would love to find a life partner, but I’m also currently content with being single. I want to live someplace quiet and peaceful, preferably near the water. I want to exercise regularly, including physical therapy. I want to be financially stable. I want to spend less time home alone and more time with people I love. And did I mention that I want a dog?

Most people don’t think about their goals often, if at all. Having a chronic illness doesn’t necessarily change that. For some people, it might make them think about their goals less. I happen to go the opposite way. I need something to reach for. I need a happy place to aim for. It gives me a reason to try. Let’s face it, living with chronic illness is work! Reaching for my goals gives me a bit of incentive not to give up on that work.

What about you? Do you spend a lot of time thinking about your goals? Do you avoid them? Do you change your goals over time? What’s one thing on your list?


Why I must be my own medical detective, and you should be yours

March 17, 2015

I just solved a huge mystery. My doctors agreed that it makes total sense. But they didn’t think of it. I did.

It’s not easy to research a health condition. It can feel impossible when you don’t have a diagnosis. I went to the library when my symptoms started, but I didn’t find anything. That was in the pre-household-internet dark ages of the early 1990s. When I got online a few years later, I tried again, but I didn’t find anything. Years later the internet had more information it on so I tried again, and again, no luck. It was looking up symptoms. I didn’t have a diagnosis yet.

11 years after my symptoms started I had a diagnosis, but it wasn’t very helpful. Then I got more diagnoses. And more. And more. Still, I couldn’t piece together the puzzle. I was overwhelmed. I gave up.

One day in the library I was reading a novel and I suddenly had the urge to get rid of (or at least ease) my daily nausea. I found some books, and my journey began.

I was fortunate in many ways. The brain fog was bad, but I was still able to read. It was slow and torturous, but I did it.  I was educated enough to make sense of some difficult matter. I had just enough diagnoses to follow the right breadcrumbs. I had a fantastic library at my fingertips. I found the right books when I was in the right mindset. I was lucky. But I also worked damn hard. It took many, many months to get through those books. And it was worth every minute.

I’ve noticed lately that I have a lot more free time now that I’m not always studying those books and reading websites and following Facebook groups. It’s not that I’m cured, but I learned enough to get stable, and I was ready to take a break before tackling the next thing. I’ll do it at some point, but now I’m resting.

A couple weeks ago I was having bad brain fog. (I still am.) It came on suddenly and I didn’t know why. Maybe it was the estrogen I’d recently started again for my PCOS (polycystic ovary syndrome)? I could imagine why that would make a difference, but that was the only change in my medications. Or maybe it was the change in seasons? I always have trouble when the seasons change, especially in the spring. I checked with my naturopath. She agreed estrogen itself wouldn’t have this effect, but maybe the fillers would. Or it could be the change in seasons. But that didn’t feel right. I know how that feels, and the symptoms, their degree, and the style of onset just didn’t feel like it came from the start of spring.

There was nothing to do but wait and see. I hate that. But I had no choice, so I waited. Then the other day I looked in the mirror and noticed one eyebrow was thinning near the end. That was odd. It’s a classic hypothyroid symptom, but my thyroid has been stable! I have Hashimoto’s Disease, so antibodies are attacking my thyroid. In theory that means that I’ll need to adjust my medications over time, but my immune system has been calmer lately. And besides, wouldn’t the onset of brain fog be more gradual? It didn’t seem right.

Then a few hours later it hit me: the estrogen! I’d read in my research that estrogen affects the thyroid hormone delivery system. I’d paid attention because at the time I was taking estrogen for my PCOS. I went off of it later. If the estrogen I started a few weeks ago was binding those thyroid hormones, then it could have made my current thyroid dose partially ineffective and caused me to become hypothyroid again! This explains other symptoms, too, like my slight depression, moodiness, and increased appetite.

I emailed my naturopath. She agreed. I emailed my thyroid doc. He agreed. I’m getting blood work done tomorrow. There’s no doubt in my mind that I’m right, but the blood work will confirm it and then the doctor can write me a new, higher prescription.

No doctor was going to catch this. That was clear. I was going to continue to get worse and worse and maybe, just maybe, someone would have eventually realized it was my thyroid. But how sick would I have gotten? Instead, we caught it early – I’ve only been on the estrogen for 3 weeks. With any luck, by next week the brain fog will have lifted and I’ll feel stable again!

Being a detective isn’t easy, but it’s necessary. No one cares about my health more than me. No one will fight harder for my health than I will. And no one can understand my body better than me. Someone else would look at my history and say that this was the same thing I deal with every March. Only I could know that it wasn’t because it just didn’t feel like it.

Think about what you know about your body and your health that no one else can know. Then, when you feel up to it, consider doing a little reading. And please come back here and let me know how it goes!

Do you do your own research? Have you felt it was worthwhile? Please share your experiences, good, bad, or otherwise, in the comments!