Thursday, August 09, 2012

Personal Maintenance Fail, with Bonus Lessons Learned

I am recovering from perhaps my biggest personal maintenance fail ever.

(Don't worry Mom and Dad! I'm fine. And I don't think the recent trip to Arizona has anything to do with this story- the timing is coincidental.)

About a month ago, I noticed that the maintenance inhaler I use to keep my asthma under control was empty. It took me a few days, but I eventually dug up the box with the prescription number on it and went to call in my refill. But then I noticed that the prescription had expired in June. This meant two things: (1) either I had been inhaling nothing for several weeks or I had been missing doses (or both!) and (2) I'd have to call my doctor to get her to call in a new prescription.

It took me at least two weeks to get around to calling my doctor. I did it on a Monday. The prescription was called in for me that day and was ready by Tuesday, but I didn't pick it up until the weekend- I just couldn't make the time to get to the store. (Or so I told myself.) I had at least made a doctor's appointment for myself when I called for the prescription- but in the time that I went without making this call, I'd called and made doctor's appointments for both my kids, called and made an eye doctor appointment for myself (I wear disposable contacts and they are running low), and sorted out a billing error made by a doctor I hadn't seen in roughly 7 years (I was charged for someone else's urine test). So clearly, I had time to deal with my prescription. I just didn't prioritize it.

I have mild asthma, so what happened next crept up on me. My asthma had been slowly getting worse, but I'd blamed it on the colds I kept getting from Petunia, or the fact that I'd gone near a cat (one of my biggest triggers), or... nothing, really. I just didn't take it seriously.

Then, on Saturday, when I was sitting on the plane on my way to a much-awaited visit to my family in Arizona (I know! What kind of nut goes to Arizona in August? But the visit was worth the heat) I noticed that my asthma was actually pretty bad. I don't get the stereotypical asthmatic wheeze, at least not loud enough for anyone to hear without a stethoscope. I get a dry cough- which I'd had for weeks at this point- and my back muscles get sore, presumably because I'm working harder to breathe. If I am particularly dense, I might get a panicky feeling before I realize I'm not breathing well. This time, it was the sore back muscles and increasingly frequent cough that clued me in. I dug my rescue inhaler out of my carry on and used it, and expected that would be that.

But it wasn't. My asthma stayed noticeable for most of the visit to Arizona. I used my rescue inhaler once or twice every day. We flew home Tuesday evening, and by the time I went to bed, it was so bad that I ended up getting a second pillow so that I could sleep in a more upright position. I struggled through the day on Wednesday, using the rescue inhaler more than I can ever remember doing in the past. When I got home, I knew I couldn't wait until my doctor's appointment for help- it isn't until late August. I called the doctor's office to see if anyone could see me sooner. The earliest I could get an appointment was Friday. I knew that was too late. So I made my first really good decision in this entire story: I called my husband and informed him that as soon as he got home, I'd be going to urgent care. And then I made dinner.

Traffic was bad, and my husband got home late, just as the kids and I were finishing our dinners. I kissed the kids good-bye, grabbed my purse and my Kindle, and headed off to urgent care. I got incredibly lucky and there was almost no wait, so I was able to get a breathing treatment (not much fun- those meds made my heart race, and that is apparently normal), get a chest X-ray to rule out pneumonia, and drop by the pharmacy to pick up a prescription for a five-day course of prednisone, all before Petunia went to bed. I definitely got off lucky, timewise. As I walked out of urgent care, the waiting room was full. If I'd arrived then instead of two hours earlier, I think my visit could easily have taken 4-5 hours. Still, urgent care is far better than emergency care for this sort of thing, so I'm glad I decided to go while my situation was still urgent, and not emergent. Also, that meant I could drive myself and didn't have to drag the whole family along or call my sister or neighbor to come watch the kids.

I've had exactly one day of prednisone, and I already know that I never want to take it again. But I also know that I can breather freely for the first time in over a month. I've still got the cough, though. I suspect my doctor will adjust my maintenance meds when I see her in a couple of weeks- I'm on a less-favored inhaled steroid because it is OK to take while pregnant or nursing, and I haven't been back to my doctor since Petunia weaned back in February. I suspect she'll also lecture me about taking better care of myself, and she'll be right.

Obviously, the biggest lesson from this whole experience is that I need to take my asthma more seriously. I am used to thinking of it as a mild, no big deal condition- because it has been for me. But that can change, and one sure way to make that change is to let it get out of control. Asthma is a "cascading" illness, meaning that a flare-up can essentially feed on itself and get worse and worse rather than getting better, unless you step in and interrupt the cascade. It is also a disease that can cause damage that makes it get worse and worse. I need to stop the next cascade sooner, so that I don't allow damage to occur that makes future cascades worse.

The next big lesson is that my husband and I need to get a better handle on our non-work lives. We've both been very busy at work, and we've also not been communicating well about chores- and I include the organizational "master planner" type tasks like remembering to make doctor's appointments and the like in "chores." Traditionally, I've done most of the "home project management" work, because I am (usually) better at it. It is, after all, what I do for a living. But I've clearly maxed out my mental load again, so we need to rebalance. During the period of time in which I was failing to refill my prescription, my husband revamped our picture-sharing system and researched and bought a new voice over IP phone. The picture system work is something he convinced himself needed to be done before he could post pictures for our families to see and the new phone was prompted by the fact that our old handset stopped working, and will also save us a lot of money. But. Neither of these things are as important as making doctor's appointments for the kids (Petunia needs shots at her next visit, Pumpkin needs a form filled out for school). And they certainly aren't as important as making sure I had my asthma meds. To be fair, I did some less important thins, too. I took some dry cleaning in (and forgot about it until last night- oops). I wrote a bunch of blog posts- always after the hours in which I could call my doctor, but I could have done some work instead to free up time during the day to call. And so on.

I'm not sure how to improve this. I need to wait until I'm feeling better to discuss it with my husband. He rarely gets sick and isn't the most empathetic person when it comes to illness, and he really doesn't understand chronic things like asthma. I am relatively freaked out that I had to go to urgent care, and I am really annoyed about the prednisone. A conversation now is unlikely to go well, so we'll delay it, but have one soon. I'd like to figure out a way to outsource more around the house, but he is resistant to that, for some good reasons, some cultural reasons, and some silly reasons. He's gotten almost comically careful about spending money- arguing with me tonight about whether I should get a cell phone plan that costs $40/month when I could have one that cost $30, for instance. I understand that this difference is important for some people, but it is absolutely in the financial noise for us. Still, the expense will probably be a source of resistance to any extra outsourcing. I will point out that I spent almost $100 last night by the time I'd paid my copay and paid for the new prescriptions. So doing nothing has a cost, too.

I'm also planning to let technology help me more. My medical group has an online communication option, which will make scheduling appointments easier once I get it set up. I can switch to mail order prescriptions for my maintenance meds, so I can order those online and have them delivered to my house. I will finally get a smartphone, sync the calendar app with my Google calendar, and start using that to remind me about things like when I should get my prescriptions refilled and the like. This, in fact, is why we were discussing cell phone plans tonight. And yes, I'll get whatever plan I want!

My final lesson is less for me, and more for people who don't have chronic illnesses and often wonder about why those of us who do have them don't manage them better. I hear this most about people with mental illnesses and diabetes. I am a grown woman working in a very flexible workplace. I am well-educated about my illness- heck, I can draw you some of the pathways that go haywire when I'm having an asthma attack. I fully understand how serious the disease can be, and I know what the meds I take do, down to the molecular level. There is no stigma associated with my disease, and no one thinks it is "in my head." I have plenty of support and plenty of money, both of which make it relatively easy for me to make healthy choices. Furthermore, the healthy choices I need to make to manage my asthma are easy ones- no yummy foods to avoid, for instance.

And still, sometimes, I fail. The symptoms of chronic illnesses can sneak up on you slowly, so that you don't notice them until you're in a full blown acute attack. I don't notice that I'm struggling to  do something as essential as breathing. I can only imagine how much harder it is to recognize the symptoms when the symptoms themselves interfere with your ability to process what is happening, as is the case in many mental illnesses. I can also imagine how much harder it is to call your doctor for an appointment if you have scheduled breaks instead of flexible ones. So, cut us some slack, healthy people! Yes, some people do stubbornly refuse to take ownership of their own health. But I suspect that far more people have stories like mine, where a series of seemingly minor suboptimal decisions land them in urgent care or the ER. I will make changes to minimize the chances that it will happen again, but I can't guarantee that it won't. No one can.

38 comments:

  1. I'm so there with you, except recent illness pushed me straight over the edge and instead of waiting until I was calm I flipped my shit, started yelling at sciDAD about WTF was going to happen now that my sabbatical was over and I'd be out of the house during all those oh so convenient hours to make appts etc. I SO wish we had online communication options here for appts. I've seen ladyparts doc, and my dentist, got fMhgirl set up for dentist, but still need to make appt for fMhson to see specialty dentist, and get myself in for mammogram and dermatologist. SIGH

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    1. Oh, I yelled at him the night I came home from urgent care, after the kids were in bed. And I was much grumpier/sharper with everyone last night than I usually am. Poor Petunia got upset at one point and went in her room to pout- she's not used to Mommy being so grumpy. But I didn't start the big conversation we need to have about what the heck to do to make things better, because I knew it would snowball into a massive fight for no good reason!

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    2. fortunately sciDAD was calm and yes the kids were like why are you fighting. We seldom have the heated discussions in front of them

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  2. I'm sorry you have been so unwell.

    I'm pretty impressed with your last two paragraphs. THey show a lot of insight that many people really don't have.

    My twin brother has schizophrenia, and is very good with taking his medication.

    When he has stopped taking it, it has been because something stressful has happened, some kind of trigger event that starts him becoming unwell, and THEN he stops being 'compliant'. It is generally becaude he can't get to see a dr in the small window between the trigger event and his illness snowballing.

    Apart from in the very early days, as a young man, newly diagnosed, he never just up and decides he is well and doesn't need his medication.

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    1. Thanks! I think asthma is really good parallel for mental illnesses, really. Maybe because it is a disease in signal transduction, much like mental illnesses are? Or maybe just because of the chronic nature.

      How frustrating that your brother can't get in to see a doctor right away when a trigger event happens!

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    2. I was going to say the same: I found it really insightful that your experience led to such a deeper understanding & compassion for people dealing with chronic physical & mental health conditions. That really opened my eyes to how easy it can be to "slide" into "non-compliance"---and I work in healthcare & deal with this routinely I guess the more difficult question, then, is how to prevent this from happening. People always say "easier access", yet, doctors/staff/etc... are all trying to juggle their work & families & lives and having 24/7 office hours for non-urgent appointments just isn't practical. Automatic refills or reminders can help, but I've also seen patients show up with 10 bottles of the medicine they never took (for example, because they were concerned about side effects but never called to ask about it), because they were refilled every month regardless---for expensive medications this leads to so much wasted $ and, thus, higher costs for everyone. Its a really hard problem, especially, like you said for people with limited resources & support and even more for those with mental health issues that by definition make organizing/following through difficult.

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    3. @ana- I wish I had better suggestions for how to help people avoid this! The other factor that *should* work in my favor is that I'm good at improving processes- it is a big part of what I do for a living. So you'd think I could get the process for keeping myself breathing sorted out.

      I think in my case, a reminder email when my prescriptions was supposed to have been refilled might have helped. But maybe not- the inhaler has a little number that counts down and makes it obvious that I'm running out.

      The online systems for making appointments are a huge step in the right direction- for me, the problem isn't so much going to an appointment once I've made it, because it is blocked off on my calendar. It is calling to make the appointment in the first place, because that seems like something I should be able to just squeeze in, but then I don't get to it. Or I try and give up because the hold times are too long. Or whatever.

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    4. The milliner7:55 PM

      Calling to make the appointments is the worst. I always try to schedule my next appointment while I'm still in the office after the current appointment. Works well for almost everything except our family doctor. The receptionist still uses hard copy agendas and on top only keeps an agenda for a month or two in advance. WTF? This is 2012! Clearly this makes me insane. And I'd actually change doctors over this issue, except that it's pretty much impossible to get a family doctor here.

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  3. @Cloud- I hope you're on your way to recovery and that the doctor's appointment later this month will clear things up. I've been trying to do one personal maintenance task per week, ahead of time, but it has a way of boomeranging on you. For instance, I scheduled an eye doctor appointment only to have the doctor think my prescription had changed massively, she put me in new lenses that irritated my eyes so awfully I had to wear my glasses for a week. I come back a week later on their insistence because of this so-called rapidly changing prescription, only to find out it hadn't changed at all. So I had two visits, and a week of irritated eyes. I think this is one reason people put stuff like this off -- so much of medicine is so unfriendly to people with anything else going on in their lives.

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    1. I hear you on the boomerang effect! I have a new prescription for contact lenses sitting on my desk, waiting for me to fill. Maybe this weekend.

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  4. This is a big reason that we use the grocery store pharmacy rather than an actual pharmacy. That way we can pick up a prescription when we do weekly shopping. (Important when I was on birth control or metformin.)

    Feel better soon! And good luck with getting a new system/habit set up so this doesn't happen again.

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    1. Interesting idea. I'd have to change grocery stores to do that, though- the one down the street from us doesn't have a pharmacy. Of course, the drug store with my usual pharmacy is in the same shopping center.... I had a lot of luck with the mail order system back when I was on birth control pills. I'm not sure why I stopped using it.

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  5. Isn't it nice that you know yourself well enough to a) know when to go into urgent care, and b) know when and when not to have serious discussions with your partner?

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    1. The sad thing is that I almost talked myself out of going to urgent care. Once I got there and had the breathing treatment is was soooo obvious that it was the right decision. But at home, I was less sure.

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    2. Amen! You made two very, very good calls.

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  6. mom2boy9:21 AM

    "He's gotten almost comically careful about spending money."

    Do you set aside each month an amount that is a Cloud fund and then do household/joint spending out of the rest? It can't cause him angst if he doesn't see it come and go, you know. Obviously you care about your husband's feelings and if $10 a month is important to him you don't want to minimize that but at the same time you work really hard and are compensated for that work and have arranged your life so that you can spend an extra $10 a month and not stress about it. He should respect how important that freedom is to you and how you've earned the right to have it. IMO

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    1. Oh, he backed down right away. I told him I'd transfer an extra $5 per pay check into our joint checking account if he wanted, and that highlighted the silliness of it all. I think he had just lapsed into his engineering "optimize this variable" mindset, where the variable is our total net worth. I need him to think more of a multivariable optimization!

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  7. I'm glad you're breathing easier! Asthma scares me - my aunt died of it when I was younger, even though hers was pretty mild (on vacation in a foreign country, having forgotten to bring her inhaler along, and not having mentioned the asthma to her boyfriend). Turns out breathing is incredibly important.

    I've been procrastinating about making a dentist appointment for months now. For some reason I just put off booking an appointment until they've reminded me at least twice - which drives my husband nuts because he's usually the one fielding the phone calls. It should be so easy, and yet the fact that I have to remember to call during business hours, actually get through to them on the phone (just tried calling - they're gone to lunch and not answering) and then try to figure out what is going to work well with my schedule a couple months out - too frustrating!

    W.R.T maintenance medicine, mail order is awesome, as is online re-ordering. I love not having to go somewhere or interact with anyone.

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    1. I'm so sorry about your aunt. That is tragic. I am really cautious when traveling abroad- if I'm going somewhere where I don't know the medical system and am not convinced I could get help immediately, I actually get an EpiPen and carry it. I am petrified to use one, but I assume that if I truly couldn't breathe, I'd get over that.

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  8. I completely understand. Reorganization at my job means that I lost my office and gained a cubicle, which means a lack of privacy. It also means that my bosses insist that I make up any time I am away from the office, even though my job has Exempt status.

    The result is that I feel that I cannot go to a doctor's appointment, because going to a doctor's appointment means I need to work later, which in turn means that I will not be able to spend that evening with Baguette.

    My solution is to schedule as many doctor's appointments as possible for the same day, and then take that as a sick day.

    This worked once, but frankly it just isn't possible to get everything done in one day. That day, I saw my OBGYN and my primary care physician. But I still need to see my optometrist (it's been nearly 2 years) and at least one specialist.

    So I still have to schedule those appointments. But first I need to borrow someone's office.

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    1. When my company moves to our new building next year, we're all going to be in cubicles. The big boss believes that improves collaboration. Of course, he sits in an office... So those of us who work at our desks (instead of in a lab) and need to concentrate will be buying noise canceling headphones.

      It sucks that your bosses expect you to rigorously make up time. In my opinion, that is silly and counterproductive, unless you're going to let people "bank" time when they work extra.

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    2. "we're all going to be in cubicles. The big boss believes that improves collaboration."

      We had an open cubicles floor plan at my old company because the men in charge hired McKinsey or BCG (can't recall which) and became convinced that having everyone out in the open would encourage teamwork and productivity. I don't think it made much of a difference except it may have increased the number of petty annoyances between staff.

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  9. Personal maintenance can be hard even without the encumbrance of a full time job. Getting around to see the doctor for me takes 2nd, 3rd place after almost everything, even when my life threatening nut allergy is concerned amd God only knows why.

    A little reminder in the way of a slight reaction does wonders I find.

    Glad to hear you are feeling better.

    P.s Am I the only one who has difficulties with typepad? Refuses to type or make corrections consistently

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    1. I honestly think I'd be even worse at personal maintenance if I were at home with the kids all day. They have a tendency to frazzle me!

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    2. The milliner7:59 PM

      I have the same problem with typepad when on the iPad. Not a problem when I'm on my laptop or phone. Totally annoying.

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  10. I think this is common, to be lax about personal maintenance whether it's yearly health exam to exercise to managing chronic illness, because so many other things compete for our attention. I'm bad about scheduling doctor appts -- it just seems like a hassle - so I leave it on my to-do list for way too long. Glad you're feeling better.

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    1. This reminds me: do any of you schedule full annual physical exams for yourselves? Of course, I do it for the kids, and I go get my annual or biannual gyno check (breast exam and pap smear etc), but I have not had a full physical since I came to the US (13 years ago) and they are not routinely done in my home country so I would have to say I never had a full physical. I have a very competent but very grumpy primary care physician; when I suggested having a physical he said something along the lines of "why? there's nothing wrong with you."

      So I am curious to see if people (here people means mainly busy adult women) actually have them and how often.

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    2. I used to get these regularly when I was in my 20s/early 30s; Now I tend to skip and just go to the ob/gyn for pap smear/breast exam, unless I don't feel well. However, it seems like I have to see my primary doctor every 2 years and I just figure I'll do the whole physical when I'm there. I'm mainly concerned about my glucose due to past gestational diabetes. of course I think you have to tell them you want this when you make your appointment.

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    3. I can't remember when I last had a full physical. But I occasionally end up with blood tests to check that there is no medical reason I'm tired (nope- just sleep deprived) or things like that. And of course, having asthma means that I get breathing tests every time I go to the doctor.

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    4. I get a full physical every year. It's when I can talk to my doctor about big-picture stuff rather than specific concerns like my sinus infection of the moment. I'm also good about going to the dentist twice a year. But I've been really bad about my optometrist appointments ever since I was pregnant with Baguette. I like her a lot, but I'm not sure her office hours and location still work for me.

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  11. I'm glad that you are feeling better! I think personal maintenance is a hard thing to keep on top of when you are working, spending time with your kids, and running a household. Everyone knows they should do it, but it really isn't any fun, the bureaucracy of scheduling an appointment, and the time it takes away from things you'd rather be doing (and are often more urgent in the short term) can keep it on the backburner. If it makes you feel any better, I once put off going to the dentist for what I thought was 8 months, but was actually more like 2 years and then I had to have a deep cleaning (so, so horrible) because of it. I think most people have an experience somewhat like yours that reminds them to put it back on the radar. I've set reminders for myself on Outlook with six month alarms with medium success.

    Recently, my mom was diagnosed with heart disease and diabetes because she had just never made it to the doctor in, oh, 25 years or so! If she had just gone to a regular doctor earlier, she would be in much more manageable shape. Not to mention that she didn't have a relationship with any medical professional when her situation became urgent, which made it much more difficult to navigate. Her experience has been a real wake up call for me. But even with that in the recent past, I still find it challenging to stay on top of all the little details that personal maintenance entails.

    That is why, after I read your post, I remembered that I had to make an appointment for my daughter. So thanks for that!

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    1. Ah yes, I've had the dentist visit of shame before, too, and needed a deep clean. That sucks. I swore it would never happen again, but... I'm past due on my dentist appointment. My dentist moved to an inconvenient location, so now I need to find a new one, etc, etc.

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  12. I am so glad you are feeling better! My sister had serious asthma as a kid, and I remember all the scary labored breathing and many, many trips to the emergency room. Our childhood was colored in large part by her illness. My eldest son has mild asthma which we manage, but a major problem are other people's pets to which he is very allergic. It really is to the point of us wanting to prevent him from going to certain people's houses because he's miserable for days after a visit.

    I hear you on talking to husband. I too am getting stretched thin and husband is resisting outsourcing cleaning... And I am tired of fighting over mess.

    Take care of yourself and I hope you have better luck than me in negotiating a suitable division of labor!

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    1. I'm sorry about your sister. Asthma is MUCH easier to control these days. That is one of the triumphs of modern drug discovery, even though a lot of the benefit is derived from reformulation of known drugs (steroids) into a new delivery mechanism (inhaled- so directly where it is needed, and fewer side effects).

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  13. This is not your problem alone, the system also failed you (depending on your hospital/managed care group, some electronic health record systems' programs get triggered when a maintenance med doesn't get filled, in your case, the rx had run out too, but if it's a chronic condition, ideally the RN or someone from the doctor's office should have contacted you)
    I think people in healthcare are only starting to attend this, but health maintenance and attending to chronic conditions well is the number one way of keeping people out of hospitals. Asthma deaths are completely preventable in america, yet, I have seen people die from them.

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    1. You know, I think my pharmacy would call and remind me if I signed up for their program! What I really need is Saturday doctor's office hours, but of course that would suck for the doctor so is unlikely to happen.

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  14. So glad you're feeling better now and sorry that you hit one of those episodes. :/

    As a fellow chronic issue person, agree that it's (sometimes shockingly) easy for a series of seemingly mundane problems to ball up and turn into a serious showstopper, and just because you know this, it doesn't mean that you can always stop it. It's just a part of being a fallible human.

    We do keep implementing/tweaking systems to reduce the frequency: using the mail order system, ordering medicine much earlier, setting myself work from home days to make myself actually GO to appts, PiC pitches in and makes other appts for me, etc.

    It's not always the easiest thing for him to understand either but he does understand the effect of my thing because it's *slightly* more obvious. Still, it takes time to figure out better disease management in the family. *hugs*

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  15. The milliner8:28 PM

    Hope you're feeling completely recovered Cloud. These kinds of things always throw everything off for a bit. Like @paola, our slightly urgent (or very urgent...we've had enough of both) situations have helped us hone our systems for health & disease management. But we still mess up. If DH has some weird symptom that's lingering, and he's not already talking about calling his doctors, I'll push him to do it. We have enough examples from waiting too long in the past that my prodding carries more weight now. But he's also gotten better at being more proactive too. I remember discussing DH's complacency in going to the doctor a while back with a friend (now deceased) who at the time was undergoing cancer treatment. It was great as he could give me the view from the other side without it being emotionally charged. Essentially his response boiled down to the fact that sometimes you just get tired of dealing with your illness, and sometimes you're scared of what you'll find out. I have to think that with chronic illness, fatigue in managing it over the long term sets in. This is why I don't mind stepping in for DH in being more proactive about his illness at times. Kind of a pinch hitter for the long run.

    Granted, it's my own health I tend to be more slack about. Though that's improved as well for me. I tend to have a rather bland health record...which is a good thing...but it is also a breeding ground for complacency. The worst combination is when I'm busy at work and have a minor health grievance. It can drag for a long time. Sometimes it works itself out, but sometimes just gets worse. The solution to my problem is trying to have more wiggle room (not planning every moment of every day) and to carry less of the mental load around here. Hard ones to solve.

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