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

Sharing too much and not enough

November 19, 2014

I get tired of answering the same questions about my health and insurance woes from my family and friends all time, and they feel awkward about constantly asking. It would easy to just have them follow this blog, but I’m keep this blog anonymous, and only a select few know about it. So I send emails.

I don’t send too many emails, and the last one was several months ago. I always find it tricky. I want to include enough information to answer everyone’s questions, but not so much that the email is cumbersome to read. I want to cover everything, without overwhelming anyone. I want to share enough, but not too much.

There’s no guideline for this. There are online tutorials for writing the perfect business-related email. There are tips on writing difficult emails to a friend. But I’ve never heard anyone mention a group email to update friends on a chronic health condition. I try to keep the tone light, but informative. It’s serious, but not too heavy. I only started this a couple years ago, and most of the earlier updates were insurance-related, so it was easy to make fun of the system. It’s harder to make jokes when I’m writing about my health.

And then there’s the audience to consider. Close relatives and less close friends and everyone in between are all on the list. They’re all people with whom I feel comfortable sharing this info, so privacy isn’t a concern, but their knowledge is. The people who I’m closer to know a lot more about my health conditions in general and often the specifics that I’m dealing with at any given time. A good friend who I speak to less often won’t know these things. I know I need to include enough details for the latter to understand, but I don’t want to bore the former.

Now let’s say I find a balance for all of that. There’s still the issue of my own shyness around this stuff. I’m happy to answer questions, but feels so self-centered of me to send out these emails, as if everyone wants to know this stuff. I know that’s irrational. I know that they want to know – most of them get this email because they asked to be kept in the loop. I guess I’ve just never been good at being the center of attention for any reason.

I’ve been meaning to write this latest email for over a month. I’ve thought about it from time to time, but I just never got around to it. Today’s the day. I’m going to write it right now. I just wish I knew what I was going to say.

4 Comments | Educating, Frustration, Rants, Support, Symptoms | 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

What dog sitting has taught me about my health

November 8, 2014
2014-11-07 08.15.06

It’s time to get out of bed and play!

It’s been an interesting week for me, to say the least. For the first time in years, I’ve recently begun to have less stress and more time, but that also coincided with extra pain and other symptoms and with some family issues. But this week, I was doing ok. I was feeling pretty good health-wise. My “to do” list feels overwhelming, but only because of the quantity. There’s nothing really horrible on it, like dealing with insurance companies. So it wasn’t such a bad week for watching this cutie.

I was nervous about this. I’d promised a while ago that I’d watch this adorable little guy, but as the time approached, I wondered if I could really do a good job. I’ve always wanted a dog of my own, but it was never feasible. First I was working and traveling too much, and I had landlords who wouldn’t allow dogs, and then my health problems prevented it. Recently, though, I’ve started to think that I might be able to handle dog ownership if I could find a landlord that would allow dogs. And this week was my test.

Now, if I got a dog I’d have a yard (it’s the only way I’d do it) so that would make things easier. Still, it would be a lot of work. This guy is 11, so he doesn’t need as much activity. Plus, he’s the easiest dog I’ve never known. He rarely barks, he lets you know clearly when he needs to go out, he doesn’t pull on the leash, etc. He’s great! And he was exhausting. So how much more tiring would a younger dog be?

2014-11-03 17.57.09

Look how cute I am! Don’t you want to share your dinner?

Last night I never finished washing the dishes. I was too tired. But the pooch still had to go out. There was no choice. So out we went. Down the stairs and outside, and he peed, and then back up again. Now it’s 9:30 am and I’m exhausted, but he hasn’t had any exercise today, so we’ll be taking a walk. And I still need to finish those dishes. It’s just what happens when there’s a dog in the house. I’m completely worn out and, after a full week, I’m glad I’ll be returning him to his owners today.

But then there’s the flip side. I’ve gotten more exercise than I have in ages, and I actually feel good about it! Now, the truth is that this is coinciding with some health improvements that I’ll write about another day. Still, even with those improvements I wouldn’t have done so much walking if it wasn’t for this guy. Not a chance. I might have taken a walk every other day. Instead, I’ve been taking 2 walks every day! Look, I even wore him out!

There have been studies about how petting an animal lowers blood pressure. For someone with hypotension that’s really not a concern, but it’s so relaxing to have him curl up on my lap. It’s just the best! I haven’t done much knitting this week

Thanks for the walk! Now goodnight!

Thanks for the walk! Now goodnight!

because my hands have been otherwise occupied with petting this adorable dog. Look at him! Who wouldn’t want to pet him? He helps my stress more than I would have thought.

And then there’s having someone else to focus on. No matter how tired I am or how much pain I’m in, I have to think about taking care of him. It’s good to shift my focus. I think we’ve all experienced this is in different ways. I know that I have. I teach a friend how to knit, or I give advice to someone, or I do some volunteer work, and it’s a great distraction from my own issues. But having someone here who needs my attention every day, like it or not, brings that attention shift to a new level.

It’s been a fantastic week. I’ve absolutely loved it. And while it’s shown me that I’m not ready to have a dog quite yet, I can tell that I’m getting close. And that when I do, it’ll be more beneficial to my health than I ever would have thought. Now if you’ll excuse me, someone wants to play fetch. Hint: it isn’t me.

Do you have a pet? How do you handle its care on your worst days? How does it help you?

9 Comments | Expectations, Fatigue, Milestones, Raves, Symptoms | Tagged: , , , | Permalink
Posted by chronicrants

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