TGIF

A few quick pictures.

First up. This is what 'graduation from physical therapy' looks like. Lots of band-aids. Mostly to protect wounds from additional falls. All on the left, although she's got bruises on the right. She's consistent in telling me it's her hip giving out.


After I took that pic, she removed the band aids (not my preference as she falls enough I like their protection for healing scrapes and wounds) and then messed up her big toe. This is my attempt to stanch the rather profuse bleeding.


Then I made almond-flax 'toast'. Texture is just like bread, flavor is not. It's not bad different, just not bread. It will grow on me--hell, this is nothing compared to greens powder.




I made an egg mcmuffin with my almond-flax toast. It was yummy. Not my best pic, but I was very hungry.

Getting There

I'm down to 2.5 mg. It just seemed like I needed to taper a bit faster. My body shifted gears to feeling like I had too much steroid rather quickly.

I never know if I'm right until it's done, but I'm about 95% accurate when I change the dose.

Of course, tapering makes me tired, but not tapering was not working either.

I've been sleeping a lot.

Dreaming of exercise.

Sometimes I try to work. I have several stories I'd like to finish, but my brain is still not quite synapsing normally due to the fatigue. It takes a super human effort for me to write even 500 words that are worthy of publication.

I think this time next week, I should feel like I'm past the worst of it. But I could be wrong.

Meanwhile, I'm sucking down my first Coke Zero in a month to see if it'll help crank me up. So far, it's not working.

The toddler had a lovely play date with a bunch of other kids. Perfect behavior. It was nice to see because I think every parent worries that one bad interaction means big problems. I know she's a good kid. I know we get a lot of the big things right as parents, but there has been such conflict with the neighborhood kids. But I don't think their parents are as attentive as they could be to their kids' social skills.

I don't like our neighborhood anymore. The housing market crash has changed the demographics quite a bit. Ideally we would move to another school district. One where parents pay more attention to their kids than their cigarettes. But I'm not sure that will happen.

You know, smoking has been such an issue--I think we're the only non-smoking parents on our street--that I want to find an asthma commune. I'm tired of having to awkwardly bow out of social gatherings because I can't handle the smoke.

Also, I am starting to think there really is a correlation between smoking and parenting. I have not found it to be a positive one.

I'm sure there are great parents out there who smoke, but I'm not living next to any of them.

My First Big Fail

I tapered to 5mg yesterday and it went okay, up until I went for a walk. After that I was a limp noodle on the couch, unable to stay awake.

For over two years, I have somehow managed to meet every parenting obligation and responsibility. Whether I felt like it or not.

But yesterday? I slept through the toddler screaming.

I couldn't stay awake and I couldn't get up when I needed to. I knew I should get up and check on the toddler but I couldn't wake up. I've always been afraid of this. Always been careful not to let myself lie down when I'm solely responsible for the toddler, but I couldn't control it last night.

Everyone is okay. Thank God. She got sent home for being physical with her friend--a behavioral issue that has recently cropped up. Yeah, great, we spend years sitting on our hands and not spanking only to have her become the neighborhood bully.

Of course there are mitigating circumstances. She's outpaced socially and one girl has turned out to be big on social exclusion, targeting my kid (the youngest), so the toddler falls back on trying to physically put people where she wants them. Since she's two full clicks over the growth curve and her peers are two full clicks below, she can actually pick them up like dolls. She's like Andre the Giant's toddler cousin.

Surprisingly (and I know, you'll be shocked to hear htis) they don't like being 'toddler-handled' and cat fights ensue.

With lots of screaming.

Which I always hear before it hits critical mass and intervene. (I am the only parent who bothers to show up before it's gone too far. Ironically this was a big part of the bitchy rant I deleted yesterday. I'm the only one who gives a shit, which is lucky for their kids since mine has finally figured out how to throw around her weight, literally.)

But I was asleep yesterday. Too exhausted to even hear my girl when she needed me. And I guess our other house guest, who usually keeps an eye on everything, decided to hide in their bat cave in the basement instead. So the back up failed.

All this drama because of a mile long walk. I think there are 90-year-olds who can walk three.

Sometimes my life seems unlivable with the health I have. Yesterday was one of those times.

I feel awful. For my girl. For the other girl. Me and my stupid stupid health.

Tireder with Extra Bitchiness

Sunday was not a rousing success, but, as is so often the case, you get one good day followed by a not so good day. So really it's all normal, right?

The bitchy part I wrote originally has been deleted. Let's all imagine sunshine and rainbows now! Your choice if it's after the apocalypse that destroys all the people you can't stand or after the aliens come and give us the key to world peace and leave us all singing kum-by-ya (or however the hell you spell it) in a round.

Tapering and More Food

I tapered yesterday because today is going to be a bit busy and I wanted to be through the worst of it. Went down to 7.5mg of hydrocortisone. It was okay. I had some issued with weakness and fatigue and lack of appetite, but it passed. I was able to go for a walk and did a slooooow elliptical workout for about 20 agonizing minutes.

In my new office.

Yes. New. Office. Mine.

See, house guest 2 left and, since I do produce income with writing, I feel justified taking a room over for myself. And I put our ancient elliptical in here with me so I can combine writing and exercise (assuming I have the energy for it) because sitting is so damn bad for you.

The toddler's new playroom is in the basement. Where I'll probably end up writing since it's cooler down there. I want to be cheap and not run the a/c during the day this summer. (We'll see how long I can suck the heat up.)

Here are some food pics. I'm going through a food phase. Are you shocked to hear that?

Dinner last night was a huge indulgence. One of my favorite meals. Steak. Salad. Broccoli and fresh berries.

The salad was an apple-pecan-bleu cheese medley with a homemade balsamic dressing.



A few days ago, the strawberries looked so luscious I decided to make love to them with chocolate.


And...here's a bit of a food flop. Gluten-free high protein gnocchi. They were yummy, but the first batch disintegrated in the water. I baked the rest and that was our lunch.


Now for those keeping track of my GERD (which I hope not because that's probably weird), tomatoes are a problem for me. I tried it without Nexium, but I got slammed with stomach acid and had to take some before acid started squirting out of my mouth every time I talked. Gah. What an awful feeling. Dislike!

Magic Show

My head is stuffed with tidbits on Corporate Epistemology.

Don't ask or you'll never be able to shut me up.

Because I have way too many thoughts now about the epistemology of medicine.

In theory today is my last day at 10mg.

The asthma has been acting up, retracting all the skin on my chest until I can't 'pinch an inch' let alone even move the skin. I've been using the albuterol inhaler.

Otherwise, things are fine. Big birthday party for friend's kids today featuring a semi-famous magician whose been on TV, on shows you've heard of. Amazingly, their fees for bday parties aren't too bad. I'm impressed.

I found this quote to be inspiring and I share it in the hope that it does the same for you.

I beg you, to have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don’t search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer. -Ranier Maria Rilke

TGIF

Saw the pulmo. Same old, same old. Not quite as dismissive of the edema this time, but not wanting to prescribe meds for it yet, which is fine. I just don't want to bloat to death. Basically, I need to buy a bigger shoe for those days when my feet have swollen past their usual size 9 so I can still exercise. That will be interesting.

Energy continues to be better on 10mg. I don't really 'wake up' until it hits my system. I also still get some residual weakness/fatigue, especially at the end of the day when the steroids have worn off.

However, I baked muffins (pumpkin-cranberry), did the dishes, washed the cabinet faces, wrote an article, played badminton with my hubby and visited my house guest's new apartment.

(Why is it the house guests we like always leave and the ones we can't stand stay forever?)

That's, like, a pretty normal day for me. It was exciting.

My plan with the steroids is 5 days x 10mg, 5 days x 7.5mg, 5 days by 5mg and then alternate days until I don't need it. (More likely I'll ping pong all over the place because it won't be linear.)

I'm not sure why I'm doing so badly. I don't think I suppressed again. I used steroids, but kept the doses very low because:

1) High dose steroids don't control the asthma any better in my experience. By the time I've outpaced the five different meds I have in my arsenal, no amount of steroids is going to be a cure. In fact, the 125mg I got in the ER only lasted a few hours, it's impact had faded by the time I was discharged.

For the record, I go to the ER for the nebulizer treatments. Ones with more meds in it than I have at home, which did not happen. Actually, the ER flubbed too. I saw in my discharge papers that I supposedly got 2 neb treatments 30 minutes apart, which is a lie! I wish that had happened! ER Fail.

2)Not breathing is easier than HPA axis suppression. I have said that before and I was so not kidding. I was/am/always will be desperate to protect myself from suppression.

So 125mg solumedrol was the most I got. I metabolized it very quickly--the steroid withdrawal hit me not even 12 hours later, which I thought was strange. Usually it lasts more than 24 hours before assaulting me with full body muscle cramps.

Going back to my original theory--I didn't stress dose enough and put myself in the hole. That one is fairly plausible. I was stingy with the steroids and suspect this is the price I pay for that. Let's hope my payment plan is enough for the piper.