To Oblivion and Beyond

First some general announcements:

1. Per the Queen of Optimism's request, I've added a subscription thingy. I think. Check the side bar and let me know if it works.

2.We fixed the electrical problem and learned we are very, very, very lucky our house did not burn down. Also, very, very, very lucky the hubby is handy.

3.The dog food had a dead mouse in it. New bag. Contacted the manufacturer and never heard a thing. Nice to know they care. (I know this has nothing to do with my health, but it has really been quite remarkable around here lately with all sorts of weird ass shit happening. Also, evidence that I am not crazy, my life is.)

Okay, so let's talk about squats. Namely the fact that, unless I'm having issues with prednisone, my legs don't ever tell me when it's time to stop. Instead they go numb and I happily squat myself into oblivion.

As in I can't walk for a week.

As in I once crawled up and down the steps at a Gloria Estefan concert. (My friends pretended not to know me.)

Normally, I compensate pretty well and don't push it to the max. I have learned when to back off.

However, recently, I did one of my favorite workouts. One I haven't been able to do since before I got pregnant in '07. Not sure if it has an official name or not, but I call it interval running.

I'm not really a runner. I've tried. I run like a hippo with missing limbs. Which is okay, I don't really like running. What I do like is running, skipping, galloping, chassee-ing, hopping, walking front kicks, lunges and walking for a couple miles.

So the workout consisted of walking 200 steps, running 200 steps and then interval running for a mile. Knee didn't even bother me until the very end and all the pain was clearly muscular in origin, which I consider to be good news (unless a ligament blows, in which case, boo hiss).

It was a blast. Nothing better than a chassee spanning 50 feet, no?

Yes, I'm a little strange.

Anyway, I felt great physically. The asthma flared a bit on the stairs, but that was actually a good thing, because once it has its little fit, it tends to leave me alone the rest of the workout.

Plus, my toddler came with (and hubby) and ran with me for a bit, which is awesome as we want her to enjoy exercise.

The problem? My legs did not give me one. single. solitary. hint that I was overdoing it. Nada. Worse, I haven't been able to walk properly since. Major bummer.

My calves are so inflamed, Advil alternated with Tyelnol can't even touch the pain. Hell, I can't even touch my legs, they are so tender. Today, I finally forced myself to do some massage to try and rub out the worst of it. Didn't help at all.

And...Ow!

Also, once again, I'm a temporary single parent as the hubby is out-of-town. How is it every time he's left town this year, it's been an absolute mess at home? I can't squat down to shampoo the toddler's hair right now! Stairs are not only painful, but dangerous as I can't control my legs very well. Fortunately, she's in a mellow, cooperative mood. If she dug her heels in about bedtime, for example, there is no way I could pick her up and carry her up the stairs.

Hopefully, by next week I'll be able to at least do the elliptical or walk the dog. I'd like to do one more interval run before we leave for vacation just so I don't lose ground.


P.S. Did 100 push-ups the other day. I'm building strength but my arms still look like cotton candy gone horribly wrong, which not really the goal, you know? I told the hubby, I'm a transformer in disguise. Under all the fat is a good amount of muscle that no one can see.

Marriage and Chronic Illness: Sucking

A few weeks ago, I was over on the lovely blog Queen of Optimism (see sidebar for link) talking about how to explain chronic illness to those who are in good health.

Frankly, I tire of trying to educate people so I can be a bit bitchy about it. Further, I have the good luck as well as ill fortune to be married to the healthiest man on earth.

A man so healthy, that when we all had a terrible stomach flu during the toddler's first year, he wondered if he was going to die.

From the stomach flu.

Ha!

HA!

I still laugh to this day thinking about it. Granted, it was a truly horrid stomach flu. Like a category five hurricane in our intestines. I threw up about 40-50 times in 8 hours and had black eyes from burst blood vessels, but having been through what I've been through medically, I knew the stomach flu was nothing other than a temporary annoyance.

My hubby was planning his funeral. I was still breastfeeding 24/7.

So, yeah, how do I explain chronic illness to someone like that?

Or when it is stressing our marriage?

See, sometimes the hubby perceives me to not be carrying my weight. True, I am not the brawn of our relationship, I am the brains. So the work I do of planning, organizing, putting together, taking apart, reorganizing etc... is kind of invisible. Existential sometimes as well.

Why, yes, I am the Godot everyone is waiting on.

The hubby knocks down a wall to make a bedroom or nails some cedar down to make a deck, both activities that create longstanding witness to his work. Then he looks around and thinks, 'huh, what the hell has Pissed Off Patient done lately?'

My work is constantly undone, a perpetual motion machine. I load the dishwasher only to still find dishes in the sink. I clean the bathroom only to find a certain small toddler's finger prints everywhere. In Crayola blue.

Do I take lots of breaks? Sure. I need them. But dinner is on the table, dammit.

Do I care if there are dirty dishes? No, not really. I've recognized I am not going to win that particular race. So I clean as I can and then I just don't worry about it. This is a philosophy that works well with chronic illness.

Sometimes I'd like to see how the Hubby would like it if his deck randomly disassembled without warning. Given his Type A personality, I bet it would give him a facial twitch.

So when he gets cranky about me doing or not doing xyz, I have a few different ways of describing the mountain I have to climb to do the simplest things.

1. Remember the last time you were so sick you couldn't get out of bed? Now, imagine if that's how you felt every day and you still got up, got dressed and did everything you were supposed to.

2.Someday you'll get sick. Disease comes for us all. Someday you'll be sick and you'll wonder how I ever did anything at all.

3. And last, but not least, a personal anecdote. First a set up: Apparently, having small children means vomiting mightily at least once a year. We have puked every year since the toddler was born. So this year, the hubby had the stomach flu and was coddled by yours truly.

Just as he got better, I got sick...on a weekday. On top of the stomach flu, my adrenal glands were not functioning well. So hubby went to work because why, I don't know. I was left puking and feeling like I was going to pass out (thanks to the adrenal glands) while parenting a small child who had broken the baby gate. This effectively meant no lounging on the couch for me because I had to compensate for the broken baby gate.

This anecdote makes the hubby stop, think, and readjust his attitude.

The thing is, I am quite strong and determined and I push through a hell of a lot that would flatten a lesser person. Chronic illness toughened me to where it was no big deal to have the stomach flu, which is kind of a saving grace considering how the hubby handles being sick.

One of us has to suck it up.

Shape Up

I am getting bored with working out. I don't feel like it's helping me lose weight anymore.

Which I know, for me, exercise is not really the answer. But I had toned so much and had such great success in changing my body shape, I thought if I just did more and did it harder, I could continue to have dramatic positive results.

Also, I do like being physically active, but it is a time suck and a logistical challenge. I'm hitting the wall of 'do I really want to kill myself and move heaven and earth to find even more time to devote to squats?'  I mean, how many squats do I need to do?

The fact is, I have insulin resistance, a parting gift from prednisone. And if I am not eating a strict low carb diet, I am not going to lose weight. That's just the way it is.There aren't enough squats in the world to make me skinny.

I am low carbing, but not strictly. As in, I ate a plum yesterday and I will probably have corn-on-the-cob tonight. The other day, I had a small piece of french toast. I won't gain weight, but I won't lose weight. Little stuff matters even if every other thing I put in my mouth has zero carbs.

So I need to refocus on what I'm eating and stop thinking if I just work out more that will solve the problem. The carbs have got to go.

By the way, one of the workouts I've been doing is a 20 minute Shape 'body makeover' dvd. It's fast, hits hard, and never seems to get easy. The extra segments kind of suck--too much channeling of yoga, pilates, and Cirque du Soleil contortionist for me, but the main 20 minute workout is fantastic. Highly recommend.

Not a Cave Woman

So it turns out caves are an asthma trigger for me*.

I googled it but, it appears for everyone else, caves are an asthma cure. For me, they make the lungs purr and hiss like a bipolar cat.

Well, at least I didn't have to go to the ER.

Although I can't say using the nebulizer in a hotel bathroom at midnight is my idea of fun either.

But so far, so good, no prednisone. However, I am kind of bummed to be revisiting the kind of asthma that not only severely limits my activities, but also requires me to be aware of where the nearest ER is. It's been a long time since the bad old days, I am not happy to see them rise again.

For now we are home safe and sound...except our personal little black rain cloud was mighty busy while we were gone. Turns out we have some kind of electrical problem that turned off the fridge while were gone. So we had to do a big clean fridge clean out after figuring out where that horrid smell was coming from.

This after having to buy a new washing machine right before we left town. Between the lungs and everything else, it's rather chaotic around here.

Not sure who we have pissed off, but boy are we sorry. Please let us know what we can do to make it right.


*Either that or it's the 1,000,000% humidity or the temp differential between the two. I don't know. The one cave tour we did prohibited people with lung problems--something I didn't find out until after the tour as hubby bought the tickets. Sure enough, I was wheezing after we left that cave.

Taking the High Road

First, you have to read this post talking about doctors and patients with chronic disease. Really good stuff.

The cookies and muffins are baked. I did a midnight run to the grocery store and was up late baking, but the food is ready. The clothes are all set to go into the suitcase. I have cleaned the house from top to bottom (which is a weird fetish I seem to have inherited from my mother. The house must be clean even though no one will be home, but when I am home? Oscar the Grouch would not feel out of place.).

And the lungs are not happy. (Perhaps from the dust?)

And I still need to workout today.

So I've decided I'm just going to not care about the breathing. I'll take the rescue inhaler and ignore it.

We'll see how far that takes me.

Repeater

So hey, I guess I should read my own blog before I post. I think I've said the same thing about prednisone and asthma three different ways over the last few weeks.

Sorry about that. My brain doesn't work anymore, not since that time I didn't sleep for a year.

Anyway, I have a sore throat today.

Not sure what that is about. I keep drinking more and more water. Then some diet pop thinking surely soon this painful lump will be washed away, but no. It's still there.

I would really appreciate it if the germs in my life would not do a Superbowl worthy pile on. Okay? Thanks.

The toddler is sick and coughing a tight, wheezy cough. I've been offering her the albuterol inhaler and she's been accepting, which means she must be feeling pretty rotten since we usually have to give her a roofie and then tie her down to get any meds into her (just kidding, about the roofie at least) (Also, it's her inhaler, prescribed by the ped,by the way, not mine). The cough seems to respond well to the inhaler, so another check in the yes-my-child-has-asthma column.

The timing is perfect, as usual. We have big plans this weekend. A road trip to Mammoth Caves in Kentucky. Turns out our houseguest has a thing for caves and he started drooling when I mentioned Mammoth Caves was well, not close, but doable by virtue of the fact that we like road trips around here.

But I have a sore throat and a distinct lack of energy. I am supposed to be in the kitchen cooking almond flax muffins and reduced sugar oatmeal cookies for the trip. Instead I am blogging and fantasizing about taking a nap.

At least I worked out this morning. A wimpy, lame-o half-assed workout, but I showed up and put in the time which has to count for something.

Oh, and here's a tip. Don't take your blood pressure while watching a really scary movie when you are a big fat scaredy cat. It will be sky high.

Cough Variant Asthma Sucks

But the prednisone worked beautifully this time.

My mom has bad cough variant asthma related to her horrid sinus problems. Watching her hack and then take her inhaler clued me in to the idea that maybe my coughing episodes weren't so innocent. So I started taking albuterol when I hacked and Lo! I felt better.

Other signs that it's asthma include non stop coughing. Coughing that wakes you up and doesn't let you sleep. This is asthma and not a regular cough.

When this latest go round started, I took very low dose prednisone because I knew it was asthma. I used just 10mg, which is what the endo said I needed to support the adrenal glands when sick. I figured if I needed a higher dose, I had more pills so why not start low and go high, instead of starting high and going low but now low enough? I am not anxious to repeat what was done in March!

The 10mg was perfect. First day coughing decreased 80% and I had a full night's sleep, second day down 90%, by the fourth day I had a loose cough clearing out gunk and day five, so far, I'm cough free. I don't know if this dose would work across the board since this was a very mild flare up, but it's something to consider since I seem to be so sensitive to prednisone.

I often wonder if the 60mg x 10 days we did in March didn't make things worse given my peculiar physiology.

Anyway, if the coughing hadn't been so persistent and keeping me up all night, I would not have even considered prednisone. My peak flow didn't even drop that much.

But after having a baby who, apparently, was born with a PhD in torture and specializing in sleep deprivation, I have zero tolerance for lack of sleep. I deteriorate pretty fast without regular sleep so prednisone seemed to be the lesser evil.

Brief Aside: Ironically, I am short on sleep today after the toddler was up last night for several hours with 'heat fever'. That is not a medical term as far as I know, but she got too much sun I think and not enough fluids (even though they were provided!). She was burning hot so I had her in bed with us, administered Motrin and begged/pestered her to drink something. I finally got 0.5 L in her about 2 hours later (she's pretty stubborn!) and now I am paying for it with eyelids heavy as anvils. (See any horrid typos? It's the lack of sleep!)

So today is the last day of the improvised five day prednisone burst, we'll see how I tolerate being off the prednisone. Will my body honor conventional medical wisdom that 5 day bursts don't need a taper or will the adrenals hit the wall again?

Anyone want to place their bets? Me, I'm just crossing fingers and toes. I'm too afraid to bet on anything.

At least I was able to keep working out pretty much the whole time. Totally kicked my own ass yesterday. Hard core. 200 stairs, 1 mile hike, ran up a hill and back down 4 times, 40 push ups for the pecs, 20 pushups for the triceps, 40 tricep dips. Nice!

Why?

Up all night coughing.

The thing is I don't feel particularly bad, I just cough. Then I take the inhaler, it recedes and then comes back. So I added in some cold medicine to try and dry up the teeny bit of gunk that is in my lungs.

Now I'm exhausted from the lack of sleep and it seems things are getting worse i.e tighter, wheezier, gunkier.

I am confused because, while annoying and tiring, again, I don't really feel sick sick. So...why?

In response I upped the prednisone into an official 5 day burst and will try to talk myself into dragging out the nebulizer. Hopefully that will be enough to kill it.

Because I don't know if you read the last post or not, but I had serious plans to kick my own ass for the next 30 days.

They say you make plans and God laughs. I make plans and God f*cks me up.

Quickie

I should be in bed, but here I am. Too lazy to get up and actually find the bed.

The pulmicort refill should be sorted out now??? The doctor's office sent a new prescription to another dimension so it never arrived at the pharmacy. I think it's all sorted out now.

Finally.

Which is good, since I've been having a mild attack for the last several hours.

Is attack even the right work?

I can't stop coughing. The albuterol helps for a while and then it starts back up. Is that an attack? Poorly controlled asthma? A mild asthma exacerbation?

What?

I've had a mild cold so there's some gunk in there to irritate things. (Note: One thing you never want to hear from a houseguest upon arrival is "I think I have strep throat." Not a pleasant statement, although it turned out to not be strep and I've kept it at bay with all the vitamins I swear by--hey it works for me.)

Oh yeah, I had to take prednisone because of the cold. That was interesting. I hit the wall energy-wise and had to do it because I was rapidly becoming comatose. My body truly does not have the physical ability to handle stress.

It reminds me of breastfeeding. Yes, boobs. I remember when my milk came in, feeling this immense strain in my body as it figured everything out. My body was working overtime, it was something else. I, apparently, feel the same sensation of overall strain now when sick.

On the exercise front, I did a hard core hike in 95F heat with air so humid, I chewed it as I hiked. 1.5 miles, 150 stairs, ran up and down steep hill 4x, and finished with 40 push-ups. This means I am almost at pre-pregnancy fitness levels (and wearing pre-pregnancy jeans, although I am still fat.).

I now have a swim suit that is two sizes smaller than when I started. It looks good, but my arms and thighs are a hot mess. I have bad genetics in those areas on top of everything else. So, despite the squats and push-ups and stairs, I have some real problem areas.

I've got a month until our beach vacation and have sworn to do what I can between now and then. We'll see how it goes.

As for the knee, it's fine until it's not. I have no idea if I'm exercising my way out of the problem or into a more serious injury.

And that's what's what with me.

Under Attack

So the asthma has been a bad bad thing of late. I don't know why. I had an attack last night while walking the dogs and was up at 5am with another acute episode. I would like to Zumba tonight, but fear that will end in attack as well.

The good news is I don't have an underlying infection making the situation an emergency.

The bad news is I can't get the pulmonologist's office to give me a new Pulmicort prescription.

Oh, sure, they'll call in a refill because they know how to do that, but my insurance will reject it as it appears to them that I am trying to get medication a full month earlier than I should be.

People seem to be having difficulty with the concept of the dose/usage has changed and I need a NEW prescription reflecting this, NOT an effing refill.

I have left messages to this effect and nothing has happened.

Other than I have paid cash out-of-pocket for 20 more days of Pulmicort. (Cash that I SO do not have, it has been financial apocalypse over here all week long, we are so poor right now--temporarily so).

This one Pulmicort inhaler is not enough to get me to where I can refill my 90 day script (which the next 90 day refill would get me to the next pulmo appointment where, I hope, I can resolve this).

I would happily taper down, but see above re: two acute asthma episodes in less than 24 hours.

This is not the time to take less medication. Somehow I'm going to have to come up with 10 extra days of Pulmicort.

Any ideas? As far as I can tell, I have my shit together, but the doctor's office and insurance company are a hot mess and I don't know how to compensate for that. Shoot, I started this process when I still had 10 days of Pulmicort left, surely that would be enough time to get everything sorted out?

Ha ha ha ha ha. Joke's on me, my friends.

There's always the emergency room right? They live for this kind of shit. Not!