Update in lieu of snoring

My body’s exhausted, but my brain’s wide awake, so you get a blog post.

Nighthawk is done the IVs, which is good. He’s still exhausted (mostly from the IVs) so is off the next two weeks to try to recharge. I can relate.

Today we watched the Phils play the Astros. I ate two hot dogs. I got a new heavier Phillies jacket to keep me warm. I watched the game unfold with Nighthawk at my side. We sat in the sun and lived like humans, with all the requisite doctor’s permission, of course. The boys of summer held up their end of the bargain and swept the ‘Stros.

Baseball fills me with joy like few other things, and even hours later, I am content.

Tomorrow is my last half-day, and is a big giant presentation I’ve had less than 25 hours to prepare for. And by “prepare” I mean “finish the prototypes” for. Going to be a rough one.

The rest of the week will wear me out but I finally think I can handle it (no really this time).

Of course, sleeping might help…

The chaos dance

Two steps forward, one step back.

Nighthawk is home from the hospital. He came home last Friday, along with all the supplies necessary to do antibiotic IVs from home. It’s not an unusual step for the treatment of Cystic Fibrosis and it sure beats being cooped up in a hospital where you have no control of your schedule, or who handles your care, or any of the fun details like that. And we have vastly superior mattresses, pillows, blankets, televisions, computers, and food than the hospital could provide.

On the other hand, there’s a regimen and routine to hospital life that is easy to adjust to when you are too sick to function, which you lose when you get out. Now instead of someone waking you to start your IVs, you up have to wake yourself. Instead of someone bringing your inhaled medication to you pre-assembled, you have to get up and put things together yourself. Instead of the medical staff coming to you (albeit on a schedule you can’t control, and for maybe 5 minutes), you have to drive to their office yourself. You finally get to sleep as solid six hours without the patient in the next room coughing or screaming or machines beeping, but you use all the extra energy taking care of yourself when you are awake.

Two steps forward, one step back.

For me, last week was three trips to Philly, four (somewhat abbreviated) days of work, and a lot of just trying to get my head back in the game. An eight-hour day interacting with a couple dozen people at work, followed by a half dozen more after hours in the act of caring for my household is more talking than I did in three days at home. Even just the work of driving was new for me, since a month of drugs that prohibit the use of two-ton boxes of metal is enough time to forget how many of your senses have to stay in “full alert” mode when you’re in charge of the big metal box.

To paraphrase my uncle, my mouth was writing checks that my body couldn’t cash.

By the weekend, having picked Nighthawk up and gotten him settled in at home, straightened the house and generally improved everything, I was running low-grade fevers and getting winded just walking the dogs around the house. So my second week back at work started with a half day, and then a half day of doctor’s appointments, x-rays, and blood tests. And orders to take Tuesday off.

Two steps forward, one step back.

The diagnosis, when all was said and done, under the opinion of two different doctors, is exhaustion. Tonsillectomy, pneumonia, sick dogs, hospitalized huband, gee, I don’t know where that might be coming from. The treatment is “Eat more protein, take your mulit vitamin, and rest. If you have to go back to work, take it slow and start with half-days.”.

And this is where I struggle, because on one hand, the doctors want me to “rest” until I have energy enough to function. But the insurance company that ensures I get paid during this timeframe works in absolutes: rest for how many days? All day or half days? With what restrictions for returning to work? The doctors, trying to protect themselves and knowing they can’t predict how long it will take me to rest and heal, say it’s up to me.

And I don’t know. I confuse responsibility with health on a regular basis. The responsible thing to do is take care of my husband, and take care of the dogs, and take care of the bills and the house and all of those things. The responsible thing to do is go back to work and earn a paycheck and contribute to society. I’ve generally been a healthy person — or at least a person who, when I got sick, would bounce back in 24 hours. Napping and reading books and playing the occasional video game in the name of “rest” is so far down my list of responsibilities that medieval monks would need to go to the second scroll to find it.

I thought I was responsible enough to go back to work after the first two weeks, when I could barely talk, was still in significant pain, and running constant fevers instead of this off-and-on nonsense. (“Am I healthy enough?” never really entered my mind.) After the third week I thought I was responsible enough to go back, but my healing wasn’t where it was supposed to be and it was more responsible of me to follow the doctor’s orders. Last week responsibility to my husband and my paycheck won out over responsibility to my immune system and despite the fact that my throat and body are healing very well, I used up what few reserves I have left.

Two steps forward, one step back.

Having visited doctors and rested most of Tuesday, I went in yesterday feeling much better than I did over the weekend, and decided I didn’t need extra time off. I could persevere so long as I got to bed early every evening. I attended two meetings, ate lunch with and cheered up a good friend, cleaned out my email (again) got a two-weeks-overdue report out the door, and despite drinking copious amounts of caffeine, almost fell asleep at my desk.

(I really need to take away my mouth’s checkbook.)

I finally started to believe the doctors about this whole “rest” thing. (One of my docs had said “Now you understand why people die from pneumonia.”) I arranged for the paperwork necessary to go back for half-days for a week and a half (look, absolutes!), and planned to start them today.

Except that today, Nighthawk woke up as sick and exhausted as I’ve seen him since he went into the hospital. Even just trying to do his own medications was going to be a serious drain on him. And a visiting nurse is coming over today, which only adds to the chaos and disorder. So rather than work a half day, I’m at home taking care of him, and trying to grab some rest when he’s napping.

Tomorrow I’ll be healthy enough and responsible enough to go back to work for at least a half day.

Tomorrow, tomorrow.

Two steps forward, one step back.

Two steps forward, one step back.

Not an improvement

This isn’t the way I wanted this winter to go.

The tonsillectomy I had on Valentine’s Day has finally healed up enough that I should b healthy enough to work. That’s not to say that I’m 100% – when I saw the doc Thursday he put me at about 80% healed but good enough that unless something goes wrong I don’t need to go back for a follow-up and I’m cleared to return to work.

When I return to work, I’ll have missed 4 weeks and a day. Close enough to a month that I refer to it as such. Not normal for a tonsillectomy, which means I’ve spent the last week just trying to get this insurance company to talk to that doctor and that medical staff to call this set of nurses, etc. etc. just to make sure I get paid.

I’ve been out of work so long that the sweaters I bought will almost be a moot point. (Thank goodness they keep the office at iceberg temperatures I guess.) I’ve lost so much weight I don’t know if any of my work pants are still going to fit.

The pneumonia is gone, as far as anyone can tell. There’s still a tiny wheeze in one of my lungs but it’s not the lung that had the pneumonia. The fever broke a little over a week ago. Compared to two weeks ago, I have boundless energy.

Except that I don’t. I have enough energy to get the chores around the house done, and make sure everyone’s fed. I’m no longer napping in the middle of the day just due to the exertion of taking the dogs out, two loads of laundry and unloading/reloading the dishwasher.

The dogs are both healthy again, though Chance took so long to get over the stomach bug that hospitalized Kaylee that I still haven’t moved them back to a mix of wet and dry food – it’s all dry until I’m sure he won’t get the runs immediately.

We’re having other related training issues with Chance that I won’t go into right now. Suffice it to say it won’t be long until I have a professional trainer come out to the house to show me where I’m going off-course.

And then there’s Nighthawk, who is currently sitting behind me at his desk doing therapy. He started feeling sick well before I had my tonsils out, complaining of an occasional sore throat that just might be the same bug that cause my pneumonia for all we know. (I filed to culture anything when I was in.) While I was sick and hospitalized and home sick again, he kept everything under control at home, took care of me and the dogs, and still managed to work more than a few days.

It cost him somewhere around 10-15% of his lung function, which is a lot when you’re not working with a healthy set of full airways to begin with. There was zero hesitation from the doctors last week. Nighthawk’s going into the hospital on Monday for at least a week and will be out of work for at least three.

So now we trade roles. Tomorrow I’ll take him down to the hospital in Philly (a new one – the CF clinic moved) and make sure he’s OK and talk to the doctors about the Plan. Then I’ll come home and get ready for my first day at work on Tuesday. I expect that to be overwhelming and tiring.

It’s a catch-22. If we weren’t hospitalizing Nighthawk I could probably handle going back to work, because I’d have him to support me while I continued to gain my strength. And I’m sure that the benefits company would say that if I’m healthy enough to drive back and forth to Philly every couple of days, then I must be healthy enough to work. (And if I’m not healthy enough to work, then I shouldn’t be driving back and forth to Philly.) But my situation isn’t either drive back and forth to the hospital or go to work. It’s do both or do neither. So I’ll be doing both.

(I might quickly decide I’m doing both with the assistance of some vacation days. But I have to get back before I can leave.)

I have a lot of support from my awesome family, and I couldn’t have gotten through the last month without them. (If Mom hadn’t dropped off delicious leftovers this morning I don’t know what or if we’d eaten dinner.)

I’m glad Nighthawk’s going into the hospital, because he’s sick and he needs the kind of care that they’re able to give him. I’m glad that he has a team of doctors that are all over the problems and care very deeply about improving his health. I’m confident that, barring some other unforeseen catastrophe, he’s going to improve in health. This will not be the trip that kills him.

I’m afraid of this week, though. When last Nighthawk was hospitalized, I was in tip-top shape physically, and the mental strain coupled with the driving and the running everything was enough to wear me down in a week. This week, I’m not going in at the top of my game.

I didn’t want this to happen.

This isn’t the way I wanted the winter to go.

Things that, given the opportunity, i will learn the hard way

If you know about thrush, you’ve seen your husband develop it, and you know it adds to the pain of mouth wounds as well as epic bad breath, you should probably ask ahead for the medication to treat it. And by “ask ahead” we mean on antibiotic change #2 in 3 days, not change #4 in 6.

The admitting doctor at the ER is probably not the one you want doing the discharge paperwork, especially if she’s shown no penchant for common sense throughout the rest of the stay.

The first day you start to feel better (regardless of the injury or its cause) you will overexert yourself and feel like crap the next day – just in time to go home and overexert yourself again.

Talking, breathing, walking, and interacting require energy and should be respected. Anyone who says they’re struggling with any of those things should also be respected. A voice is a limited resource.

Just because you’re not in pain doesn’t mean you don’t still have some lingering symptoms of pneumonia. Slow down and take your time changing the sheets on the bed.

Despite belief to the contrary, you don’t actually want to see what the wounds look like, so stop looking.

It’s easy to pick right up with bad habits when you return home to your nice comfy husband, dogs, and bed. You’re still sick. Go to sleep, moron.


Oh, and hey, this might be a good time to mention that Wednesday morning I was admitted to the local hospital for pneumonia via the emergency room. I’m feeling much much better than I have really since the tonsillectomy on Monday.

As usual, my body decided that we had to go a long way out of our way to come back a short distance correctly.

In theory I get discharged Friday (dayshift today, in other words) but since that was yesterday’s theory too, I’m not putting much weight i not it until we get closer to it. I’d like to get discharged soon. I think life is a lot easier when I’m the caregiver and Nighthawk is the patient. Also, the dogs are only going to tolerate the kennel for so long before they take over.

But now I am tired, so I am going back to sleep.


I was asleep when the alarm on my IV pole started going off. I woke up enough to read “GLASS CLASSPIDS” rolling across the marquee in red lettering. No clue what that meant so I hit the nurses’ station bell and tried to fall back to sleep.

Holly had only been in here 20 minutes before, to shut off an equally annoying IV alarm, and I knew it had taken her a few minutes to respond then because of another patient emergency, so I didn’t worry when she didn’t show up right away. I fell back to sleep, but the alarm continued to sound, so I didn’t get much more than a few fitful moments of rest before I was up staring at the GLASS CLASSPIDS alert again.

I tried ignoring it two or three more times, with no luck. Finally upon re-waking I realized that the IV pole’s manual was out on my bed, flipped open to the apart for GLASS CLASSPIDS.

It said:


This woke me up firmly, and I realized there was no alert on the powerless IV pole, nor was the a manual. According to Google there’s no such thing as a glass classpid. There’s just my lizard brain trying to get the attention of the sleeping brain bits using whatever metaphors it thought would work in my current envoironment.

I drank two cups of water from the pitcher at my bedside and started typing this up… And my GLASS CLASSPIDS feel much better now, so I’m going back to sleep with the hope that lizard brain doesn’t find anything else to harass me about before 7am.