“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

Working on my health one literal step at a time

November 26, 2014

I’m listening to the rain/sleet/whatever-the-hell-that-is hitting my windows. It’s been a quiet day. Even from my apartment, I feel how empty the city is becoming. The streets have been quiet, no new email is coming in, and few people are commenting on Facebook. Tomorrow is Thanksgiving, and everyone is busy traveling or cooking, finishing work or packing a suitcase. Well, almost everyone.

Two weeks ago I decided to walk every day. I had taken 2 walks every day while I was dog sitting, so 1 daily walk seemed reasonable. My health has been improving, and I know I need to keep pushing myself, within reason. So I set a goal of 1 walk each day, 6 days per week. So far I haven’t quite managed it, but I’ve walked 5 days out of each week, so I figure that’s a good start. I’ll have to try harder to get it up to 6.

On this quiet, rainy, sleeting, slushy day, I didn’t have anyplace to be. No medical appointments or plans with friends. I’d pushed myself to run errands yesterday so that I could avoid today’s traffic, crowds, and lousy weather. I’d succeeded, but I knew I should still walk. I needed to take that walk. I did need to go to the post office. I could wait until Friday, but why wait?

I haven’t been counting my regular walking towards my goal. I want these walks to be in addition to what I usually do. They don’t have to be long, but they should be at least 2 blocks each way if I can manage it. So the trip to the post office doesn’t really count. It’s a walk I would take anyway, and it’s very short – just a block away. But something is better than nothing.
As I walked to the post office I decided it should count. Not because of the sleet bouncing off my umbrella. Not because of the cold whipping my face. But because of the slush under my feet. I walked slowly and deliberately. I focused on my gait, my posture, my limbs and joints. I was as careful as I could be. I knew that slipping and falling could be no big deal, or it could be disastrous. The walk was probably 12 or 15 minutes round trip because I was walking so slowly, so carefully. I held my breath, then had to remember to breath. I felt my ankle turn on some uneven sidewalk that wasn’t visible beneath the snow, and I was thankfully I didn’t injure myself. I felt my foot slip slightly, but I regained my balance.
With every step, I was nervous. But I was also proud of myself. The easy thing would have been to stay home. That also would have been the isolating thing. I needed to be out. I needed fresh air. I needed to see other people. I needed to feel that I wasn’t trapped. And I needed to know that I could keep up with my exercise if I tried hard enough.
There will be enough days that I won’t be able to take my walks. I will be in too much pain, have too much fatigue, or have some other ailment. I will have to choose between taking a walk and buying groceries, which is what happened yesterday. I will have to skip most of the summer, due to my heat sensitivity. So I’m very glad that today, at least, I took that walk. It wasn’t easy, and it wasn’t perfect, but I did it.

4 Comments | Decisions, Isolation, Limitations, Milestones, Raves | Tagged: , | Permalink
Posted by chronicrants

Watching my life change

November 13, 2014

A funny thing happened when I was busy just trying to survive: my health took a big step forward. And suddenly, instead of being in one of the negative health cycles we all know so well, I’ve practically fallen into a positive health cycle.

First I left the hell of benefits applications. I got the last approval letter this week. I’m done (for now, at least.) That reduced my stress level more than I could have imagined.

Then I started with a new CPAP setup for my sleep apnea. With a couple weeks I was noticing a difference. I still have some problems with it and, with a couple of exceptions, I haven’t been able to use it for more than a few hours each night, but it’s helping. (As a side note, I saw my sleep doctor today and I’m hopefully we’ll be able to fix those problems soon.)

Then, as I was feeling less stress and more energy, I spent a week dog sitting. I took 2 walks each day and was more active in between walks. And while it was tiring, I actually felt pretty good!

Yesterday I saw my naturopath and today I saw my sleep doctor. Unlike many of the other doctors I see, each of them ask a lot of questions about how I’m feeling take the time to consider all of the details. And that means that I have to take the time to consider how I’m feeling and to answer their questions thoroughly and thoughtfully.

I knew before this week that I was doing significantly better, but when I compared how I feel now to how I felt at my previous appointments with each doctor I saw the change more clearly than ever.

And the thing is, it’s not just that I feel better. It’s that because I feel better, I’m doing more! So you know that health cycle I mentioned at the start of this blog post? Well, it goes something like this:

Feel better physically –> Be more active –> Feel happier from extra activity –> Feel even better physically from extra happiness and from extra activity & exercise –>

Isn’t that a wonderful cycle? I won’t know how long it will last, but I hope it lasts a long time!

Suddenly I’m going out with friends more, doing more volunteering for a couple of groups I’m involved in, helping others more, exercising more (I’m trying to take a medium walk every day) and generally feeling happier! It’s not perfect. My doctor today asked if I’ve thought about going back to work. I know I’m not ready. I’m not keeping up with a lot of things around the house. I haven’t been writing here as much as I’d like. There are so many things not getting done. If I can’t find balance between extra socializing (which is still less than what most people my age do,) extra exercise, household chores, and a couple of hobbies, how can I possibly add work to that mix? I’m still hoping to get there, but I’m just not there yet. And that’s ok.

It’s ok because right now I’m seeing positive changes. I want to embrace those for all they’re worth. I’ve dealt with a lot of shit lately. Loved ones have died. I’ve had excruciating pain. A promising relationship ended suddenly. There’s been some tough stuff. But now, finally, things are looking up. And I’m going to focus on that and enjoy it as much as I possibly can.

5 Comments | Expectations, Fatigue, Healthcare, Limitations, Pain, Raves, Symptoms, Unpredictable | Tagged: | Permalink
Posted by chronicrants

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