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.

Dear lady…

Dear lady I don’t know walking a big dog around my building while talking on the phone at 5:30am in a heavy rain:

My very small dog woke me up because he had to go, and he tends to be nasty to both strange dogs and strange humans alike when his tummy’s rumbling ominously. Also, he’s got a bark that would pierce a bunker, and we have sleeping neighbors.

Its your job to set the direction we’re going to walk around the building, because you were out first. So if in trying to walk my dog in the loop around my building, and I see you and I stop, it’s to avoid you. If I leave almost half a building between us, when walking resumes, it’s TO AVOID YOU.

For f’s sake, DON’T change directions twice in order to try to meet me in the middle while aforementioned dog is talking a dump. I don’t have any interest in being social to strangers in the dark and the rain when I should be asleep but instead I’m picking up crap. And just because the beast you’re walking is “friendly” doesn’t mean my dog is!

Back off!

Pissed off and grouchy

Back to my roots

During my freshman and sophomore years at college, I had a lot of time to myself, mostly because I was too paralyzingly shy to integrate myself into other groups.

I was a quick study and had a lot of time to kill those first two years. I was also dirt-poor. What little cash I had went to fantasy paperbacks, and then in a fit of curiosity, to a pack of Bristol board and a pile of colored pencils from the school store’s art section.

They weren’t cheap, but they resonated with me in a way I can’t explain. When the loneliness or the nightmares plagued me too many nights in a row, I would huddle in a candle-lit dorm room and fill pages with richly colored figures blending into vague backgrounds from my dreams.

Most of my pencils are gone now, used up long ago, and I have yet to find quality replacements. (Most boxed sets of colored pencils are missing a smooth texture, depth of color, and a soul.)

But when I launch Brushes on my iPhone or iPad, I find my pencils again, in the form of digital ink.

My art will never hang in a museum. I make it neither for the tourist nor the consumer. I didn’t make it for you or anyone like you. I don’t even make it for the end result. I make it as a record of how I felt when I huddled over the canvas and stared into the empty page.

Thank you for looking at it anyway. I hope it inspires you to find a way to capture your feelings, if only for a moment, if only to make them real.

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.

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