I’m done being the go-to sick expert at parties

December 15, 2014

It’s my fault, really. Someone asks me a question and what do I do? I answer it! What am I thinking?

The thing is, I’m happy to answer that one question. The problem is that it’s never just one question. One question leads to another and before you know it I’m talking about health issues for half an hour at a party where I was excited to get out of the house and be around other people so that I could forget about my health issues.

It doesn’t happen every time, but it happens too often. It happened last night. And I’m done.

Last night started simply, with one person asking a group of us if anyone had experience with CPAP machines, because he was having trouble with his. So of course I talked to him about my experience and tried to help him troubleshoot his issues. But as usual, two things happened that I hate.

First, this guy was all excited to have someone to talk to about this stuff, and wanted to delve into details. I saw him get that way people get when the suddenly see me as a potential mentor, teacher, or whatever. He even friended me on Facebook later, even though we’d only had that one conversation about health stuff. We know nothing else about each other. But based on that conversation, he wants to talk to me more.

Second, two more people joined in, even though they couldn’t really help. One knew nothing about sleep apnea but wanted to suggest we both try herbal medicine. The other knew a bit about sleep apnea and treatments because a friend of hers has it, so she told us what she’d heard from her friend. It’s nice they wanted to help, but they kept interrupting a conversation between two people who actually have the medical condition to offer their unfounded opinions. That prolonged my conversation with this guy, and it also made it harder to break away. Suddenly, it was a group conversation that was taking on a life of its own, so it was harder to end.

Thankfully, a friend came by, and I did something I don’t usually do. I ignored everyone else and started talking to my friend about something completely off topic. I think I asked him about his work or his holiday plans…. I honestly don’t remember. What I do remember is that the guy with the CPAP questions tried to talk to me again, and I ignored him. It was rude, but I considered it self preservation. In the past I would have answered him, and then I’d have gotten sucked right back into that health-related conversation and it would have ruined the rest of my night. I didn’t have any more suggestions for that guy, so we would have just been discussing what we’d already covered, but in more detail. This way, we all ended up talking about something else. I don’t know how anyone else felt about it, but I was much happier!

Last night was a big success, so going forward I’m going to keep doing that. I’ll still answer a question here or there, but when someone asks about my inability to eat gluten at a party, I won’t end up in a half hour conversation about Celiac Disease, how I figured out I had it, where gluten hides, blah blah blah. Nope, I’ll just promise to send them some useful links so they can read about it themselves and I’ll move on.

Don’t get me wrong. I’m still all about education. If someone thinks they might have Celiac, for example, I’ll gladly try to help them. But maybe not at a party. Maybe not when I’d rather be thinking about another other than my health. There’s a time and a place, and I think it’s about time I choose both.

Do you have this problem? Do you get sucked into health-related conversations at gatherings? How do you feel about it? How do you handle it?


“You’re too poor to see that kind of doctor”

December 13, 2014

I’d like to see a functional medicine doctor*. It sounds simple, but that sentence has complexities beneath the surface.

If I said I’d like to see an eye doctor, it would be easier: I would make an appointment with one of the dozens of eye doctors in my area who take Medicare and MassHealth. I would get my eyes checked and my insurance would pay the bill. Simple.

Of course, not every doctor takes insurance. Well, maybe I shouldn’t say “of course,” because a few years ago I just assumed they all did. And now, I’m surprised when a friend questions me. “What do you mean they don’t take insurance? Don’t all doctors take insurance?” Um, no, they don’t actually. Still, even if one rheumatologist doesn’t take insurance, another one will. The ones with the focus I want might not take insurance, so I might still be stuck, but it will be in a different way.

You would think it would be that way with every specialty, but it’s really not. When it comes to functional medicine, the entire specialty seems to be out of reach. I found several functional medicine doctors in my area who are highly recommended. Some don’t take any insurance. Others take a few select types of insurance. Most don’t take Medicare. One takes Medicare, but not MassHealth, and he works for a concierge service that charges an additional $365 per year. Medicare would cover 80% of the bill, but without MassHealth, I would have to pay the other 20%. That could easily be $150 per visit. On top of that I’d have to pay the $365 per year. And many of his tests aren’t covered by insurance, so I would have to pay for those, too.

Hanging out with a bunch of other people with chronic illness and chronic pain this week, I asked if anyone knew of a functional medicine doctor around here that take both Medicare and MassHealth. someone immediately responded, “You’re too poor to see that kind of doctor.” Normally I would try to argue with her, but this time, I’m afraid she might be right. I just can’t seem to find a functional medicine doctor who takes my insurance and without that, how can I afford to go?

I’ve gotten my medical expenses down. Thanks to a relatively low insurance premium and almost no copays, I’m paying only $500 or so every month. Of course, that includes visits to my naturopath, who isn’t covered by insurance at all. If I went to a functional medicine doctor it would have to be instead of my naturopath, and I’m not willing to make that tradeoff right now. Yes, a functional medicine doctor could order tests that a naturopath can not in my state. But I have a good relationship with my naturopath. I trust her. I’m not willing to throw that away to take a chance on someone new right now.

So once again, I see money (or a lack thereof) throwing up a roadblock in my journey to recovery. And once again, I remember how incredibly lucky I am to be able to pay for a naturopath right now. I know that many, many others are not so fortunate. Still, it’s so frustrating to see so many potentially helpful doctors who are just a different form of insurance away.

*If you don’t know what a functional medicine doctor is, check it out. I haven’t seen one myself, obviously, but I’ve heard good things.

If you’ve seen a functional medicine doctor, what has your experience been? What kind of medical care has been restricted by your lack of funds? And if you know of a functional medicine doctor in the Boston area who takes Medicare and MassHealth, please let me know!!!


A life of constant experiments

December 11, 2014

When your health changes constantly and you’re trying to improve it, sometimes there’s no way to know what will help versus what will make it worse other than to try. It can be difficult, frustrating, and exhausting to have to constantly try things out, knowing they could make you feel horrible, but what choice is there? Sometimes, all you can do is experiment.

A few years ago I hated the constant experimenting. I was nervous about each one, and so many either had no effect or made things worse. It was overwhelming to be constantly thinking about which experiment I was in and which I should do next and how to control the variables.

I’ve been noticing a big difference lately, as the number of experiments has gone down. There are still a whole lot to keep track of, but over all, it’s less stressful. I try to only do one at a time, so the shorter list means I no longer have a year-long list of them waiting. Still, I get nervous.

Last month, my experiment was to start walking almost daily. More recently it has been getting my new CPAP setup to work for me. That involved further experiments with different sleep schedules. Then last week, I took a short trip. I have 2 new supplements to try and 1 prescription to start. Walking seems to be working, as long as I don’t overdo it. The CPAP setup experiment is a partial success. There’s more to be done. The new sleep schedule is a success, though. The trip was mixed, but overall it showed me that I need to improve more before I travel again. I’ll start one of those new supplements this afternoon, then the other in about a week. The prescription will have to wait until I know where those supplements stand. Maybe they’ll make me really sick, maybe they’ll help me feel better. Maybe both. Maybe neither. And that’s the “experiment” part, because I just can’t be sure.

Having relatively few experiments to do right now is a relief, but it still isn’t easy. I have to constantly think about what I’m doing and about how I feel. Friends think I just take a pill and then wait and see. But it’s not so easy when I know that pill might make me feel really sick. Should I take it today, even though I’m going out this afternoon? And if it doesn’t agree with me, will it ruin my plans for the weekend? Or I could wait. I could put it off, like I’ve been doing for the past 2 weeks. But that doesn’t help anything, it only delays the inevitable.

And of course there’s the juggling act, as I try to figure out which experiments to run in which order. Friends think my doctor decides this but they don’t. I do. My current list of experiments spans 3 doctors, and that doesn’t include the travel. There’s no one person to turn to. Besides, no one knows my body better than I do.

I feel like my own guinea pig. I don’t like it, but it works. Trying new things is the only way to feel better, either for a minute or in the long term. So that’s why I push myself. And that’s why I’ll risk ruining both my afternoon plans and my weekend plans by trying a new multivitamin today. Because despite the problems, it’s worth it if it works. I only hope it works.


What’s your diagnosis?

December 5, 2014

We’ve all gotten some form of the question from a non-medical person:

What’s your diagnosis? What have you got? What is it? What’s wrong with you?

But how often do we have an answer?

For a “healthy” person it seems easy. The answer is usually something well-known and straightforward that requires no explanation, like the flu, a broke leg, a torn rotator cuff, allergies. You give that as your answer and move on.

If you have a chronic illness, though, there’s no simple answer.

Maybe you have one straightforward diagnosis. So you answer: lupus, multiple sclerosis, ulcerative colitis, fibromyalgia, Hashimoto’s disease. You’re even kind enough to give the full name instead of saying MS, UC, fibro, or Hashi’s. Even so, the other person has no idea what that is, so they ask what it is. But do you really want to spend 20 minutes explaining it? Probably not. I usually don’t.

Of course, you might have multiple diagnoses. Maybe you have 2. Maybe you have 12. I always have to stop and think before I list mine, and that confuses people. They don’t understand that the list is ever evolving. A new diagnosis is added, another is changed to something different, and yet another is removed. And the list is long, so I usually just give the few “big ones” and I have to choose which those are at the moment. Besides, the list is long enough that it’s hard to remember. That’s why I always keep an updated list on my phone: so that I can give an accurate list to new doctors. But non-medical folks don’t want the full list, and they don’t understand it. See the previous paragraph. They don’t know what most, maybe any, of my diagnoses are, so they want explanations. But I don’t feel like giving them over and over and over and….

Then again, maybe you don’t have any diagnoses. That’s hard for a lot of people to understand. In their minds, if you’ve gone to the doctor, then you should know what’s wrong with you and you should have a name for that problem. Simple. If they only knew. Medicine is a science that doesn’t have all the answers. So maybe you’ve seen 15 doctors and don’t have a diagnosis yet. Or maybe you have one of those “almost” diagnoses. You know the type. Like my first diagnosis was “Undifferentiated Connective Tissue Disease” which is just a fancy way of saying “We know you have the indicators for a connective tissue disease but we can’t figure out which one, or maybe it hasn’t been discovered yet, so we’ll just give you this label instead.” Try explaining that to someone who doesn’t even know what connective tissue is! Still, I was glad to have that non-diagnosis because at least I had a label to give people. When I had no diagnosis at all for 11 years, too many people (including doctors) thought I was making up my symptoms or that my problem couldn’t really be serious.

On top of all of that, you could have diagnoses you think are wrong. I have a few of those in my records. For example, I don’t think I really have IBS. Irritable bowel syndrome was diagnosed by multiple doctors, but now I think I had undiagnosed Celiac Disease and leaky gut as well as some food intolerances. Now that I’ve addressed all of those issues, my IBS has magically gone away. If you suspect a diagnosis is wrong, should you even bother to mention it?

Of course, you could have a combination of these. Maybe you have one or more diagnoses, but more that haven’t been diagnosed yet and others you don’t believe. That’s especially hard to explain. Sure, I can tell someone I have Hashimoto’s disease, for example, and maybe even explain what that is. Then they think that’s it. When I say there’s something else that we haven’t figure out yet, they’re confused. I have a diagnosis. That should cover everything. How is it possible there’s something else? Well, it’s possible because the human body is complex and, yes, it’s possible for more than one thing to go wrong at a time. Saying I should only have one diagnosis is like saying you can’t have a flat tire and a dead car battery at the same time. Yes, you can. And yes, I can have Hashimoto’s disease and sleep apnea and whatever-the-hell-else all at the same time.

I just got curious. Writing this, I realized that I was only remembering a few of my diagnoses, so I pulled up the list on my phone. The first in the list was one I’d forgotten about as I was writing this: PCOS. That stands for polycystic ovary syndrome. It was diagnosed ages ago, but I’d forgotten. Hence the list. And a perfect example of why these questions are so hard to answer.

Over the last few years I’ve mentioned several diagnoses in this blog, but I’ve never listed them all in one place. I never thought it was important. But I know some of you have been curious, so here’s a short list in no particular order. Of course, this isn’t the same list I would have given when I started this blog back in 2011. Back then, I hadn’t yet received at least 3 of these diagnoses, and I had others that I’ve removed from the list because I know they’re really part of something else. So, as of now, they are:

Hashimoto’s disease, hypothyroid, PCOS, Scoliosis, Raynaud’s disease, tinnitus, undifferentiated connective tissue disease, seasonal affective disorder, upper airway resistance syndrome (UARS), adrenal insufficiency, MTHFR mutation (homozygous A1298C).

How do you feel when someone asks a version of, “What do you have?” How do you answer?


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