Wishing my health insurance covered the other things that help the pain

September 16, 2014

What my doctors say will help me (and I agree): massage, acupuncture, medical marijuana, physical therapy.

What my health insurance covers: opioids and other painkillers, physical therapy.

Does anyone else see a problem here?

I was thinking about this today during my massage. Technically, I can’t really afford it, but I’ve been trying to get at least two a year, using birthday and Chanukah money from my parents. I should put that money towards other things, like rent, but it just helps the pain so much!

My doctor wants me to get a massage at least once a month. My physical therapist wants me to get massages even more often than that. They each brought up the subject, not me. I never suggested it. But my insurance doesn’t cover it. So I pay $70 for an hour-long therapeutic massage, and I feel grateful that I can get that “cheap” rate. The massage therapist comes to my physical therapist’s office a few times a week and books up far in advance. She actually just added more hours to accommodate the growing demand. Yes, she plays the soft music and dims the lights. But she also keeps a detailed chart, applies the hard pressure I like, and manages to work out some of my always-present knots. She’s wonderful.

During today’s massage I thought about how frustrating it is that my insurance doesn’t pay for something that helps my pain so much. And then I dreamed about winning the lottery and hiring this woman to come to my home to give me a massage every week – oh, what heaven that would be! But back in the real world it just doesn’t work that way. And I know I’m incredibly fortunate to be able to get any massages at all. So many people can’t.

Still, how nice would it be if my so-called “health insurance” covered things that actually improved my health and my quality of life?!


Pain cravings

August 29, 2014

It starts with chocolate. The next stage varies, but it always starts with chocolate.

I once read about why chocolate helps with pain. It affects some neurotransmitters or something. Mostly I think it’s a distraction.2014-08-29 14.49.20 I really like it. And that’s probably why I crave sugar, too. Two days ago I opened a bag of kettle corn. If I’d had more sugary foods, I’d probably have eaten those, too.

Then there’s the craving for fatty foods. I don’t eat a lot of fatty foods normally, and when I do, it’s in small quantities. But as the pain has gotten worse, I’ve really wanted fatty foods. I asked a visitor to go to a place nearby that has gluten-free french fries and get me a large order. In hindsight, I should have asked for 2.

Since I can’t leave the house, and I don’t keep a lot of sugary or fatty foods at home, pain cravings always leave me in a bind. I know from experience that I can eat a lot of this junk, but be thinner than usual when this current wave of worse-than-average pain finally subsides. I think that’s why I crave fatty foods – my body is looking to make up for the extra calories I’m burning off just by being in pain. Whatever the reason, I just wish I could walk down the street to buy a bag of Cheetos. Unhealthy? Yes. But will they comfort me? Yes!

I’ve been wondering, does anyone else get food cravings when they’re in pain? If you do, what do you crave? And does it help physically, mentally, and/or emotionally?


When healthcare talk is traumatizing

August 24, 2014

I’ve been noticing a disturbing trend and I’m not sure what to do about it. It’s been brewing for a while, but a couple of conversations recently made me realize how problematic it’s become.

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First there was the conversation with a volunteer for one of the gubernatorial candidates. We were in a social situation, but when I asked about her volunteer work, the conversation turned to that. She started talking about his plan to make our state a single-payer healthcare system. I wanted to calmly explain why I didn’t think this would work. I remained mostly (but not entirely) calm on the outside, but on the inside I was boiling, thinking about the many injustices I have faced within the system and how the government certainly didn’t make it any better.

The second conversation was a few hours ago. A half dozen of us were hanging out after lunch, chatting. Then one woman asked us if we’d ever faced discrimination in healthcare due to our sexual orientation (we’re all bisexual.) This isn’t something I’ve experienced, so it was safe territory, right? But just hearing people talk about their experiences was very upsetting to me. It made me think about all of the similar experiences I’d faced that weren’t discriminatory, but were hurtful nonetheless. It made me want to share my own stories that were about healthcare, but that had nothing to do with biphobia. As they talked, I remembered incidents that I’d forgotten about. I thought about recent incidents that were still fresh.

And I got upset.

Again, I stayed mostly (but not entirely) calm on the outside, but inside I was simmering, ready to explode like a volcano. I wanted to yell, to cry, to ask for understanding, to plead for someone to help.

That’s not normal. It’s not healthy. I know it. But I don’t know what to do about it. I saw the warning signs of this many months ago and I starting looking for a therapist who had experience with chronic illness issues. But then I started having health insurance uncertainties, so I decided to hold off until they were settled. Well, they’re finally settled, but now I have a different problem. For personal reasons, I don’t want to see a therapist at one of the major hospitals. I would only see a private practice therapist. And private practice therapists generally don’t take medicare and medicaid for health insurance. And I can’t afford to pay out of pocket for someone.

The truth is, I probably should have been seeing a therapist before now anyway, but I’ve always managed to handle these things on my own. I tried therapy a few times and never got anything out of it. I’m pretty self aware, so I made do. But this is different. I don’t know how to handle the anger, frustration, fear, and desperation I feel whenever anyone talks about doctors, healthcare, or health insurance. Feeling these emotions about my own situation is bad enough, but I shouldn’t be feeling them whenever the topic is broached in a way that has nothing to do with me. I should be able to talk to a friend about their own medical condition without this kind of trigger response.

I just wish I knew how to make that happen.

What about you? Have you felt this way at all? Do you have trouble talking about other people’s medical issues? Do you know of any ways to get inexpensive mental health care in the U.S. or, even better, in Massachusetts? Please comment below and let me know about your experiences.


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.