The difference between being a mystery and being a case study

August 17, 2014

When my doctor asked if he could discuss my case in the doctors’ case study meeting, I felt sort of glad. That’s been hard to explain to my healthy family and friends, but to me, it makes perfect sense.

For years my symptoms were dismissed. I was labeled a mystery. One doctor told me there was nothing anyone could do to help me and I should stop seeking medical help. The attitude could be summed up as, “If we can’t label it, we’d rather not think about it.”

The first time I felt like a case of interest was about six years ago. I’d had a biopsy done of some skin on my breast. They thought it could be cancer. I waited and waited and waited for the biopsy result. Finally, late on the day the result was due, I called the doctor. She apologized. It had taken several different pathologists to figure out what I had, because it turned out to be something very rare. It was benign, just hard to label. When I went back to get the stitches out, she explained that the pathologist had been excited to see this rare thing he’d only ever read about. It’s so rare, most pathologists don’t get to see it. And she asked if she could take a picture of the remaining patch on my breast for his files.

The thing is, at that point, we already had a diagnosis. The mystery was solved. This time it’s different.

Before I left my doctor’s office the other day, he asked if he could discuss my case in their case study session. He promised he wouldn’t use my name, but that wasn’t what I was thinking about. I was thinking about why he wanted to use my case. I had a rare confluence of medications, symptoms, and test results. I had diagnosed sleep apnea that was perfectly treated with a CPAP machine, but after a couple months the CPAP stopped working for me. The results showed odd breathing patterns. I had recently gone off of my progesterone prescription, which can be known to have an effect.. The timing is rare enough, but I took a bio-identical progesterone, which is very rarely prescribed. To see a confirmed case of sleep apnea produce these odd breathing patterns would be interesting on its own, but to have the progesterone prescription affecting this was unheard of.

On the one hand, it sucks to be in a situation like this, where there’s no known solution. On the other hand, my doctor isn’t dismissing me. Quite the opposite: he wants to study me. He does research in addition to seeing patients, so this could be to my advantage. I’m going to have another sleep study. Usually sleep studies are supervised by technicians, but mine will be supervised by the two doctors I saw on Friday. They do this with very few patients, and while I wish I didn’t need the special treatment, I’m very grateful to be getting it.

My first choice would be to have my breathing problems resolve themselves. But since that’s very unlikely, having a top doctor monitoring me while I sleep, adjusting CPAP settings on the spot, trying different mask types, and doing all he can to find a cause and a solution to this problem is by far the best second choice I could have. Hell, I would never have even thought such a thing was possible.

After so many doctors dismissing me because I’m a mystery, I’m thrilled to have a doctor who would rather study me than dismiss me. So I’m glad to be a case study. Maybe it means I’ll finally get some answers.

4 Comments | Expectations, Fatigue, Healthcare, Medication, Raves, Symptoms | Tagged: , , | Permalink
Posted by chronicrants

What it means to have a respectful doctor

August 15, 2014

I learned a while back that I have to be an educated patient. It’s the only way I’ll ever see any improvement in my health.

My health is too important to just assume that every doctor always knows what’s best for my specific case. After all, my endocrinologist may know a bit thyroid issues but really specialize in something else. My rheumatologist might know plenty about rheumatoid arthritis but nothing about my unlabeled connective tissue disease. Or they may know a lot about my conditions, but not enough about the other specialties to figure out how they all connect. No matter how you look at it, I have to be educated.

Unfortunately, some doctors don’t like this. They don’t want to take the time to answer questions. They don’t like being challenged. Most of us have experienced these kinds of doctors.

But then there are the others.

There are the doctors who appreciate my effort. They like talking to a knowledgeable patient. They take the time to answer questions and explain terminology. They maybe disagree with my assessment, but they don’t dismiss it out of hand. They consider it.

Today I saw one of those doctors. I haven’t seen many over the years, but he’s one of them. Dr. T is hard to see. He’s one of the top in his field, so there are long waits to see him. He was looking at charts of my test results today. Actually, three people were looking at the charts: Dr. T, Dr. D who works with him, and a medical student (it’s a teaching hospital, so this happens a lot.) I quietly stood behind them to see the charts, too. Suddenly Dr. T turned to my empty chair, saw me standing behind him, and gestured me over – he wanted me to see my charts! I was shocked, but then he did something that completely stunned me – without being asked, he began to explain the charts. I didn’t know how to read them, and I very much appreciated this explanation.

A little while later Dr. T and Dr. D mumbled to each other. Then they began to explain the medication they wanted me to take and exactly why they wanted me to take it. Unlike doctors who just shove a patient out the door with a prescription, these two wanted me to understand the plan. I explained my discomfort with the potential side effects and Dr. T got slightly impatient. He said that if I want to treat this issue, none of the options are great and I’ll have to make a choice. I agreed, and pointed out that my health is my top priority and that’s exactly why I was questioning everything, because I wanted to be able to make an informed decision. He no only supported me by answering all of my questions, but he even seemed to respect my position.

I left that appointment feeling good about our plan for figuring out the cause of my new symptoms. I felt listened to and respected. I felt like I was a part of the plan for taking care of my body. But mostly I felt that I had an ally, someone who would be there when I needed help and would do his best to provide that help. And isn’t that how we should always feel about our doctors?

Have you ever had one of these doctors? Have most of your doctors been this way? What has your experience been? I’d love to hear about your experiences in the comments!

17 Comments | Educating, Expectations, Healthcare, Medication, Raves | Tagged: , | Permalink
Posted by chronicrants

Period period period period. Period.

August 11, 2014

Approximately half of the population on this planet gets, has gotten, or will get a period. And yet for some reason no one talks about it. What the fuck is up with that?

A couple weeks ago I was eating lunch with some follow chronic illness folks. Between us we had two cases of hypothyroid, Hashimoto’s disease, endometriosis, neuropathy, herniated disks, PCOS, 2 cases of Celiac Disease…. and a bunch of other diagnoses. We were 4 women and 1 man. At one point I turned to my friend with endometriosis and excitedly told her that I’d gotten my period the week before. She congratulated me. Then I explained to the others that I was excited because before that I hadn’t gotten it for 7 or 8 months. The women congratulated me. The man squirmed. Now, I can understand a teenager being uncomfortable, but a man in his 50s or 60s who’s been married for years? I just don’t get it.

There are plenty of situations where it’s not appropriate to discuss my period. I’m ok with that. But if it’s ok to talk about my chronic pain, then I can talk about my period. If it’s ok to talk about my nausea, then I can talk about my period. If it’s ok to talk about being pregnant, then I can talk about my period. And I will if it’s relevant. I won’t censor myself on this.

There are cultures where a woman* is shamed for having a period, where she’s considered dirty. In some cultures, men can’t touch women while they’re having their periods, even married couples. In some cultures, girls have to cover their bodies from head to toe when they get their periods. In my culture here in the U.S. it simply isn’t discussed except in the patronizing and dismissive form of an upset woman being referred to as being “in her time of the month.” Now, it’s true that some women get more emotional around the time of their periods. Not all women do. And women, like men, can feel emotions at other times as well. Imagine that!

The squirmishness can’t be from the blood. Sure, some people have issues with blood, but that usually involves seeing the blood. Most people don’t get as squirmish when I mention a bloody nose as they do when I mention my period. Hmm. So maybe it has to do with discussion of women’s bodies. No, it can’t be that general. No one seems to mind if I mention something about my arm. So maybe it has to do with women’s reproductive systems? Could be. Legislators are regulating birth control pills and abortion but not condoms or Viagra. Many citizens think this is ok. Others may be against it, but won’t discuss it. The Vagina Monologues came about because many people won’t speak the word vagina. I admit, there was a time when I was embarrassed to say the name of the show. But by my early 20s I was over it. I wish everyone else would get over it. Because women have vaginas. And, oh-so-shockingly, women have periods!

Let’s get something straight: every single person on the planet came into being because of a woman’s fertility. Think about that for a moment. Has it settled in? Are you ready for the next revelation? Part of a woman’s fertility cycle almost always involves getting a period. Think about that a bit. Makes sense, right? A woman’s period, after all, has to do with an unfertilized egg shedding the uterine lining. They’re connected. So everyone should be grateful for women’s periods! Would you have been born if your biological mother had never had a period? Maybe. It’s possible. But it’s not likely. So be glad that women get periods! Period.

Ok, it’s your turn. Speak up! How do you feel about this subject? Do you think women should be able to openly mention their periods, especially in medical contexts, without people saying it’s gross? If you have two x chromosomes, do you discuss your period if it’s relevant? If you have a y chromosome, how do you feel when women discuss their periods?

*I’m referring to cisgender women, for the sake of simplicity. Obviously trans women don’t always have vaginas. And trans men might have vaginas. And there are plenty of genderqueer folk who don’t identify as either men or women.

9 Comments | Educating, Frustration, Healthcare, Insensitive, Rants | Tagged: , , , , | Permalink
Posted by chronicrants

Dreaming of meeting people to date

August 7, 2014

I’ve never been followed by legions of suitors. That’s just not who I am. I’ve seen it happen on tv. I’ve seen it happen to friends. But it’s never happened to me. And I’m ok with that.

But there was a time when I dated. Maybe I didn’t date often. Maybe I didn’t go out with a new date every week a la Sex & The City or Friends. But I dated.

But that was in the old days, when I was healthier. When I went out. These days, I stay in most evenings. Evenings are tough for me. When I do occasionally go out in the evening, it’s a real effort, and I only do things I know I can handle, like quiet evenings with friends at someone’s house. This is fun, but it doesn’t exactly lend itself to meeting new people. Sure, I’ll occasionally meet someone new, but usually my friends’ friends are already in relationships. What I need is to really go out. I need to attend meetup groups where I can meet single people. I need to get used to flirting again. I need to feel comfortable enough in my body that I’m not constantly wincing in pain.

I’ve worried in the past about meeting someone who could handle my health issues. I’ve finally come to believe that there are people out there who would not see my health problems as major obstacles. But how will I find those people? I know plenty of people who were ill before they married their current spouse, but usually they met their spouses when they were well enough to leave the house. Where would I meet someone now? At the grocery store? In a doctor’s waiting room? Sure, those are possible, but I’m not exactly counting on them.

After years of fearing any sort of commitment (for reasons completely unrelated to my health,) I’m finally ready to be in a serious relationship. I’m ready to meet that person who makes my heart flutter. If only I could leave the house enough to actually find them.

Note: I sincerely hope that one day my regular readers will see me writing about improved health, dating, a relationship, travel, a job of one sort or another, and the other things I’ve been hoping might still be possible some day. I haven’t lost that hope, even if some days I feel a bit discouraged.

13 Comments | Expectations, Fatigue, Frustration, Limitations, Pain, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms | Tagged: , , | Permalink
Posted by chronicrants

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