Package excitement: oh how things have changed

March 30, 2016

There was a time when getting a package in the mail was an exciting thing. It still is. But in2016-03-30 12.35.09 a very different way.

As a kid, a package was a birthday gift from a far away relative. In college it was brownies and cookies from my aunt. As Amazon and other online retailers came on the scene not long after I left college, a package meant a book, an electronic gadget, or some other purchase I made for myself. I’m a bit embarrassed by how I wasted my money, but some of these purchases were really useful. Regardless, when I saw a box with my name on it, it was exciting!

I was thinking about this earlier this week when I opened a box and felt a different kind of excitement. It’s here! Finally! This box didn’t contain a book, an electronic gizmo, or new shoes. It wasn’t fun or exotic. It was….

New medical supplies!

An ASV is like a CPAP machine – it helps me breath while I sleep. )It’s used for an unusual form of sleep apnea called central complex sleep apnea.) Every few months insurance will cover a new set of supplies – a new tube and new mask. Right before I become eligible for replacements, I can feel the current ones losing effectiveness. So I was super excited for my new supplies. It meant breathing at night would be even better, and when I breath better at night, everything in my body feels better the next day!

Part of this change, of course, has to do with money, or lack thereof. I’m simply not buying stuff online as much. Part of it is age. Relatives don’t send gifts anymore. If they want to give a gift, they give a check. Don’t get me wrong, I love and appreciate checks. But they aren’t fun like gifts are. They aren’t surprising. (Then again, I also don’t get stuck with things I don’t like.) But part of it is my health. My healthy friends don’t get medical supplies in the mail. And most people who get medical supplies probably aren’t excited by them. But I’m excited by anything that makes me feel better.

And if that small improvement in health comes in a box in the mail, then you can be damn sure I’m going to be super excited!

What about you? Can you relate? How do you feel about getting new medical supplies? Please share in the comments!


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.


Sometimes health giveth, and sometimes health taketh away

July 26, 2014

My CPAP machine broke. It’s not the worst thing that has ever happened to me health-wise, not the worst by far, but it sucks.

For a long time, probably years, I had undiagnosed and untreated UARS. It’s a form of sleep apnea. And it sucks. Oh wait, did I say that already? Oops. Anyway, when I started using a CPAP machine several months ago, I noticed a difference very 2014-04-23 11.03.16quickly. Within a week I had more energy. Over time I found I was sleeping deeper and feeling better. I was even breathing better during the day!

That why I was so disappointed when my CPAP wasn’t working as well last month. I thought I needed a new mask (I probably did – they only last about 3 months.) Thanks to insurance issues, it took a while to get a new mask, but by then, the machine didn’t seem to be working well at all. The company that provides the CPAP said they’d reset the settings. Problem solved! Or so I thought. Basically, the damn thing seems to be broken.

The CPAP is under warranty, so I’ll get a new one on Monday. I have an appointment. But in the meantime, I’m a wreck. After the first few nights of poor sleep I was definitely more tired than usual, but I was still functioning fairly well. Then last night it hit me. I’m completely fatigued. It’s hard to breath. My throat hurts. Sitting up to read takes too much energy, and typing this is a Herculean effort. As soon as I hit publish, I’ll need to lay down. I feel like I’m coming down with the flu, but I know I’m not. I know I’m not because I used to feel this way when I slept especially badly in the pre-CPAP days.

Thankfully, I don’t have anything too big happening in the next few days. I had to cancel some plans today. Friends have graciously agreed to come to my apartment tonight so I don’t have to go out. I’d hate to miss out on tomorrow’s activities, but if I do, it’s not the worst thing. I just hope I’m well enough to drive to get the new machine on Monday!

And I’m thankful for my health insurance.

Let’s face it, health insurance in this country sucks. Today is a great reminder of how bad my health was before, and how bad it would be without the CPAP. Without insurance, I would never have been diagnosed with UARS, and I certainly wouldn’t be paying for the CPAP machine. Without insurance, my condition would just continue to deteriorate. I won’t even think about what would happen with all the rest of my health conditions. I’ve ranted about the politics around health insurance before (just check out the politics category if you’re interested) so I won’t do that right here, but for those of us fortunate enough to have at least some semblance of healthcare coverage, let’s remember how lucky we are. Let’s hope we remain so fortunate. And let’s pressure our politicians to make sure others can receive care as well. Because no one should feel so horrible when there’s a perfectly good treatment available.


You might have data on your side, but I know my body

July 22, 2014

I mentioned the other day that I’ve been having some sleep issues. And I’m certain the problem is my CPAP machine.

What I didn’t explain is that I emailed my doctor about a it a couple weeks ago. He was on vacation. So I emailed him again when he returned. His vacation was extended. So I tried again after the extension was supposed to end. In the meantime, I 2014-04-23 11.03.16worked on getting a new mask and tube to replace the old, worn out mask and tube from my CPAP. When that didn’t fix the problem, I emailed my contact, C, at the company that provides my CPAP machine. He was out of town and said he’d check my data on Monday. Thanks to modern technology, both my doctor and the CPAP company get all sorts of information transmitted wirelessly about my breathing and machine usage each night. It’s pretty awesome.

Monday came and went and I didn’t hear back. So I emailed C again. Then today I emailed him again. Finally, he wrote back. He attached a sheet full of charts and graphs of my data. He explained that everything seemed to be functioning just fine, but that if the problem continues, the machine is under warranty and can be exchanged.

Now, I fully admit that I can’t understand most of the data. I don’t know what the abbreviations mean, what “normal” ranges are, or anything else about it. But I know how I feel. And I didn’t feel that the machine was functioning properly. Either the machine was malfunctioning or my breathing was broken. But I could feel that it was the machine.

So I told him so.

I wrote a respectful email saying that I don’t know how to interpret the data, but I know something is wrong, and it’s creating enough of a problem for me that I don’t want to wait to address is. I asked how we should proceed. And I hit send.

You see, there was a time when I would have followed C’s suggestion of giving it more time. But now I know better. Now I know how many times a medical provider has told me that I wasn’t interpreting my body correctly, and weeks, months, years, or a decade later I would find out that I’d been right all along. I refuse to let that happen again. So I pushed.

A moment after I hit send on that email (the world is full of odd coincidences) I got an email from my doctor. Finally. And it started with this line: “The data seems to mirror your description.” He went on to explain the problems he saw in the data. I immediately copied his message and emailed it to C at the CPAP company. My doctor had said that his office would contact the company, but it was already after 5pm and I wasn’t about to waste another minute!

C wrote back immediately: “Dr T certainly knows his stuff.” That was his way of admitting his error. The doctor was right. He said that he would make the change right away, but that it might take up to 24 hours to take effect. So I don’t know if it will work tonight, but I know I’ll sleep well knowing that I listened to my body and stood up for myself despite pages of data that said (by one interpretation) that I was wrong. I’ll sleep well knowing that I didn’t question for a second how I feel. Sometimes pushing for what I feel is right is so damn hard, but if I can get someone to listen, then it’s always worth it. Because in the end, I don’t care about the numbers. I care about how I feel. And if I feel that something is wrong, then it is.


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