“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!!!

10 Comments | Decisions, Expectations, Frustration, Healthcare, Limitations, Medication, Rants | Tagged: , , , | Permalink
Posted by chronicrants

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.

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

Where’s my apology?

November 29, 2014

Apologies are powerful. They convey regret and an acceptance of responsibility. They are also hard to come by, especially, in my own experience, with doctors.

Over the years I have seen many doctors. Some have treated me well. Others did not. Some were dismissive, some were ignorant. I was told I was just trying to get attention or that I was imagining my symptoms. I was given misdiagnoses. I was dismissed. I was given unnecessary surgery, surgery that could have been avoided completely if the doctor hadn’t ignored some test results.

I received prescriptions, judgments, proclamations, criticism, and referrals. What I never got was an apology.

A simple example: I asked my doctor to run a test for something specific. He insisted on running a less expensive test. When I got home, I researched and saw that the test he ran was inaccurate for the problem I suspected. It came back negative. I paid out of pocket to have the test run myself and it came back positive. He accepted my test results but never admitted that he should have run the test in the first place. Where’s my apology? I spent my own money, did my own research, and spent many hours fretting over this. He could have just ordered the test, but didn’t.

And then there’s that doctor who did the unnecessary surgery. Where’s my apology from him? That was many years ago, but I’m still resentful that he was so pompous about the whole thing, insisted that it was still informative. I read the records. It gave no new information, but it did succeed in increasing my pain, weakness, and instability in that joint. He never apologized.

I know the medical field is wrought with lawsuits that cost doctors a lot of money and their reputations. So they need to be careful.

But we’re human beings, damn it! Patients are not just puzzles that, when you make a mistake, can be taken apart and put back together again. And if you break a piece, you can’t just throw out the whole box. And yet, that’s often how I feel I’m being treated.

I’m not looking for a 20 minute speech for each and every misstep. But when someone clearly makes a mistake that causes harm to another human being, the appropriate thing is to apologize. This is no less true for doctors. They should learn in medical school that saying, “I’m sorry” for their mistakes isn’t a mistake and it isn’t a weakness. Personally, it would make me respect them a whole lot more.

3 Comments | Expectations, Frustration, Healthcare, Insensitive, Rants | Tagged: , , | Permalink
Posted by chronicrants

This never happened: When healthcare is about health

November 24, 2014

We (society) throw around the term “healthcare” a lot in political debates, media, and daily life. We use it to mean all care related to our health, but that’s not what “healthcare” really is.

Occasionally, though, someone flouts convention and choose to focus on actual health. I forget how rare this is until I 11-24-2014 10-18-13 PMregister my own surprise when it happens. Today was one of those days.

I’ve been having trouble adjusting to my new CPAP setup. The doctor suggested I get fitted for a different type of mask. The CPAP company has a guy, C, who handles this. I met with him for my original mask fitting. He came to my house to set up the CPAP the first time around. He came out to fix the CPAP when I had problems. He came back with the new setup last month. And today I saw him for another mask fitting. We greeted each other like old friends.

C showed me my two options and explained how they worked. He took his time, as if he had no other appointments. He answered every question. He never rushed me or made me feel bad for asking so many questions. Isn’t that how it should always be. But it isn’t.

I chose a new mask, excited, as always, at the prospect of improved sleep. C rummaged through a drawer, searching for the right type and size, and pulled out a new mask. He ripped open the bag, and I commented on how I didn’t expect to walk out with a new mask. He said, “This never happened,” and I grinned and agreed. It wasn’t the first time someone in the medical field had said that to me when giving me proper healthcare, and I doubt it will be the last.

The insurance coverage of a CPAP is incredibly complicated, but at best they replace the mask and tubing once every three months. The filter only gets replaced every 6 months, I think, and the machine should last for several years. I figured I was 6 weeks away from qualifying from a new mask. I asked C about that, and he explained that this never happened, and that he’d submit the paperwork next month, when the insurance would cover it. I suppose I’ll have to make this mask last longer than it should so that my supply schedule will line up with the insurance paperwork. But for now, I’m just so excited to try out the new mask tonight!

C knows his job. He knows what boundaries he can push. That’s clear. But he also clearly wants to help patients. He didn’t have to give me that mask. He gets nothing in return, except the knowledge that he’s helping me. So why did he do it?

No, that’s the wrong question. The question is, why doesn’t everyone else do it?

Nope, wrong again. The real question is, why is it necessary to do it? Why must someone break the rules to provide good healthcare? Why doesn’t our system focus on health as a top priority?

If our system focused on health, a new CPAP mask for me would be covered. So would many other things. I began to list them here, but why bother? We know what they are. I’ve discussed them so many times before. And they aren’t the point, at least not individually. It isn’t simply about what’s paid for, but an attitude. I would like medical appointments that aren’t rushed, doctors who don’t have to worry about malpractice suits at every turn, and practitioners to consult with their colleagues on every case to be sure that nothing is missed. I want to see a system where the goal of every examination, test, treatment, and discussion is optimizing the patient’s health.

Because what’s healthcare, if it’s not about optimizing health?

2 Comments | Expectations, Healthcare, Kindness, Medication, Raves | Tagged: , , | Permalink
Posted by chronicrants

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