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.

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Thanks a lot, hormones!

April 5, 2015

It’s easy to forget how much of an effect hormones have on our physical, mental, cognitive, and emotional health until they get all fucked up.

Now, before I continue, let me say that, yes, I will be talking about my period. Oh heavens! Some of you have already IMG_20140312_153843closed the browser screen. Others are squirming uncomfortably. Tough. This is what I talk about on this site: health issues. And that includes periods. Have questions? Read this post from last year.

As I’ve mentioned before, I have PCOS. That’s polycystic ovary syndrome. It’s not uncommon, but it affects different people in different ways, so we have to be careful not to generalize when it comes to PCOS. For me, it means I’ve never in my life had a “regular” period. I won’t bother to describe the horror that was my so-called menstrual cycle when I was a teenager. Let’s skip ahead to last year.

After many years on a few different birth control pills and other hormones, I suddenly stopped getting my period. I’d had some off months before, but this time was different. My doctor had me go off the pills to see if I’d get a period naturally. I didn’t. So he ordered an ultrasound. Now don’t get me wrong, I was thrilled to not be getting a period. It was one less thing to deal with from a body that gave me enough to deal with. And I wasn’t looking to get pregnant, so that wasn’t an issue. But there were 2 likely reasons for the lack of a period, and we needed to know which it was. Birth control pills can lean to a thinned endometrial lining, and that can mean no blood. Or maybe I wasn’t ovulating, so that’s why there was no blood. Maybe it was both. Unfortunately, the ultrasound showed that my endometrial lining was building up. It wasn’t at dangerous levels yet, but it was getting close. That’s not good.

So my doctor put me back on a birth control pill. And it’s not been good. First came the brain fog. Then the moodiness, ravenous appetite, and increased pain. Then the fatigue. I eventually realized I’d become hypothyroid again. Estrogen can bind thyroid receptors (thank goodness I’d done my own research!) My doctor ran blood tests, and while I waited for the results I went on the placebo week (many birth control pills have this: you take the pill for three weeks, then nothing or a placebo for a week.) I got my period (yay!) and felt SO. MUCH. BETTER! All those new symptoms were gone!

The blood tests came back and my doctor increased my thyroid med when I started the next birth control cycle. The symptoms all improved, but didn’t go away completely. The fatigue is still bad. I became nauseated frequently. I had occasional disturbing thoughts. The other day I was just going about my business, thinking about how lousy I felt, and suddenly thought that it might be best to die. Then I wouldn’t have to deal with the health stuff. Hmm, that’s not good. I wasn’t feeling depressed or suicidal. The thought only lasted a moment. But it was a moment too long. I’m usually a happy person, but I’d been in a bitchy mood for the past week. I’m not liking me these days.

Yesterday I’d had it. I was sick of the nausea. I worked too hard to fix my diet to be dealing with this bullshit now! And the fatigue was too much. I worked too hard to fix that, too. And don’t get me started on my mood. I just couldn’t stand it anymore.

So today I made a change. Sure, I probably should have checked with my doctors. But I didn’t. I know what I’m doing is safe in the short term. We’ll worry about the long term at my next appointment in a few weeks. So what did I do? I went off the birth control pills and I went back to my old dose of thyroid med – exactly what I was doing before this whole mess. I’m only 1 week into the cycle. I don’t know if I’ll get my period, but I do think I’ll be feeling better in another day or two, and that’s the important part.

I will need to do something to make sure I get my period at least a few times a year. There are other options. This was the option that we thought would have the fewest side effects. Back to the drawing board! Maybe I need a different estrogen pill. Maybe I need progesterone instead. Maybe I need both (which is what I had before last year.) Maybe I needed to raise my thyroid med more. That’s very possible, and I probably should have done it today, but I just felt too lousy.

Very likely, I will need to try this whole thing again in a few weeks. And I will go through this same misery when I do. But for now, I’m hoping my hormones will calm down a bit and allow me at least a few days of feeling my usual level of lousy, instead of this new level!

6 Comments | Decisions, Expectations, Fatigue, Frustration, Healthcare, Isolation, Limitations, Medication, Pain, Rants, Symptoms, Unpredictable | Tagged: , , | Permalink
Posted by chronicrants

Playing Musical Doctors

March 23, 2015

There’s a child’s game that’s really quite simple called Musical Chairs. The children gather in a circle around a bunch of chairs. Music plays, and the children march in a circle around those chairs. When the music stops suddenly in the middle of a song, everyone rushes to sit in a chair. The catch is, there are fewer chairs than children, and whoever doesn’t get a chair is out of the game. (Each time someone leaves the game, more chairs are removed from the circle.) So you always wonder who will get a chair and who will be left standing.

That’s how my calendar went with doctor appointments last week. I called it Musical Doctors.

When you see many specialists, and each require multiple checkups and followups each year, sooner or later this kind of thing is bound to happen. For me, the game started this time when I needed to make an appointment. A few days before I’d been thinking thinking about how nice it was not to have any doctor appointments lately, how much less stressful it felt, how much more time and energy I had. Then I tried to make an appointment and discovered why I’d been enjoying a blissful break in the doctor hecticness: they were all piled up in March and April! In 3 weeks I had 5 appointments scheduled, with 2 more a couple weeks after that. I often have appointments grouped together coincidentally, but 5 in 3 weeks is a lot, even for me! And suddenly I was scheduling a sixth! It wasn’t easy fitting that sixth one into my schedule, but I made it work.

I was dreading the 6 appointments in 3 weeks. It was overwhelming just thinking about it! But then I took a closer look at my calendar and realized I had an unfortunate conflict. The appointment with the hardest doctor to schedule, Dr. T, happened to conflict with a support group I’m in that means a lot to me. Not only that, but this was a special meeting of the group. It had taken me 6 months to get this appointment. The last time it took me 8 months to get an appointment. Still, I called the office and asked to be put on the cancellation list, just in case.

But I wasn’t putting all my eggs in that basket! I emailed Dr. T and explained the situation. I was clear that I would keep this appointment if I had to, but if it was at all possible to move the appointment, even if it meant waiting a few more weeks, I’d really like to do that. A few days later, I got a call from his office. They offered me another time slot, and I was so excited. But when I pulled out my calendar, I saw that I already had an appointment that day. This was the only day they could offer me. The other doctor, Dr. C, is also hard to schedule, but not as hard as Dr. T. Technically I had time to do both the same day, but I knew I would haven’t have the energy for both. I figured I’d take my chances. I took the new appointment. Now I could go to my support group!

Ok, it was time to call Dr. C. She was booking into July (and this was mid-March.) I could wait if I had to, but it wasn’t ideal. But wait, they’d had a cancellation later in April! This would mean seeing Dr. C the day before seeing another doctor, Dr. H, and each involves a lot of driving. Still, it seemed like the best possible option. I took it.

It was an odd set of coincidences, but somehow it seems to have worked out. My biannual dental appointment, my quarterly rheumatology checkup, my annual determatology checkup, and several followups all just happened to fall in the same 3 weeks. Such is life when you have multiple chronic illnesses.

After some juggling, each doctor is now in a time slot. And who’s “out” like in the game? I’m not sure, but I think it’s me.

2 Comments | Fatigue, Frustration, Healthcare, Medication, Rants | Tagged: , , | Permalink
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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!

2 Comments | Educating, Expectations, Frustration, Healthcare, Limitations, Medication, Raves, Symptoms, Unpredictable | Tagged: , | Permalink
Posted by chronicrants

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