Saturday, March 31, 2012

That Didn't Take Too Long

The second I had the thought "I've been feeling pretty good, my energy is great, I want to exercise," I became congested, sneezy and tired.

Ha.

I'm going to try and out-sleep it unless it becomes a full blown cold.

The GERD is rumbling too and I don't know why--I'm eating all the same things I always do.

My knee is purple and red all over the patella. It functions fine*, but hurts like a mofo if anything touches it.

Naturally, this means the toddler now kicks, bumps and rams my knee on a regular basis. I've slammed it into a few things myself, along with the other knee. It's a curse.

If I was into tattoos I would get a bullseye.

*For walking and daily life--not going to push things with actual exercise as it can get a bit achy.

Thursday, March 29, 2012

Am I There Yet?

Things are chugging along. Yesterday, I thought I would lose the whole week to fatigue, but I perked up enough to go for a walk last night.

The hubby is mad at me because I had a doctor's appointment and failed to mention my knee. Which was attacked by a random piece of furniture as I innocently walked by, minding my own business.

No one reading this is surprised, right? It's a theme. Just like every car I've ever owned has a cracked windshield. I bang my knees around like they owe me money and I'm the mob boss looking to collect.

What makes this time different is, it was my good knee and it looked deformed--through my jeans even--for a good 24 hours. Basically, I gave my one functioning knee a rather large goose egg.

But it felt better the next day, even if it was a strange purple color. So I didn't mention it and hubby got mad.

Which is funny to me because this is the guy who refuses to have a primary care doc and does all his health care the expensive Urgent Care way.

The doctor's visit was routine, just adjusting some medications and getting refills, but the adrenal stuff came up.

I was told again I had unusual presentation, to which I wish I had said 'not according to all the adrenal patients I talk to. I'm actually adrenal pretty much the same way all the other adrenal patients are adrenal, maybe ACTH testing is useless unless you're at total failure, maybe medicine needs to adjust the parameters because I do know I'm not the only patient like me around who is under served by medicine's ideas of adrenal problems.' But I didn't have my wits about me.

I did spend a lot of time trying to explain how I can't exercise. First, there's the two weeks on, one month off dealing with sick (mine or others) pattern, which is extremely frustrating. Then there's the 'exercise still tires me out' pattern and the 'if I do all the cooking cleaning working, then I find I don't have much energy left for exercise' sequence.

Oh, and let's not forget, 'I f*cked up my knee doing nothing in particular and need 8 weeks for it to heal.'

When the adrenals were acute, I could do ONE thing a day. Just one and that was it. Now I can do something like ten things a day, but after that, forget it. While I am much better and functioning at a near normal level, I still run out of steam.

I am surprised to be typing that because I had such great resiliency last month that I really thought it was just onward, up to the moon, but no, it's not. It's more up and down. I can still exceed my available energy and I have a tendency to over do things when I feel good. Hopefully I will leave this all behind someday and not have to worry if everything I do is going to come back to haunt me.

At least we got the stomach flu out of the way, right?

Tuesday, March 27, 2012

More Steroids, More Blathering

I decided to try 5mg yesterday and am convinced it was the only thing keeping me upright. Wow. Probably should've taken 10mg, given I was so tired, I was near tears when it became apparent I would not be able to rest and regroup before work.

Steroids also helped my stomach a lot. Soothing inflammation? Random adrenal quirkery? Who knows?

So far, this morning is better yet and I don't think I'll take any steroids today.

Two signs steroids were the right call: Despite steroids, I had no appetite and ate nothing, not due to the GERD as my stomach had improved at that point, but adrenal appetite suppression. This is what makes me think 10mg would've been a better dose, but, you know me, I'm the reluctant druggie.

Two, my sense of smell was insane. I wanted to claw my nose off my face. OMG.

The hubby used hand sanitizer and I made him leave the room. He washed his hands and I still could smell it from two rooms away so I napped with the blanket over my head. Except, the scent of my deodorant made me want to shave my armpits with a vegetable peeler just to get the smell off me. Then this lavender scent thing I bought for the bathroom began bothering me (and I love lavender!) so I put it in plastic, shoved it in the linen closet under a bunch of towels and I could still smell it through the door. I had to hold my breath and give it to the hubby with instructions to get it out of the house. I hear our garbage can smells awesome now.

The first 5mg dose and I no longer entertained a second career as a drug sniffing dog.

I called my GI doc only to find they have disappeared. So now I have no GI doc and rapidly escalating GERD. They took my stomach polyp and ran. Ha. I can't make this stuff up.

The secretary flat out told me insurance won't approve Nexium twice a day. So I begged for just 10-15 extra pills I can take on the bad days to be prescribed by some physician I've never seen. Meaning, nothing will probably happen. I did make an appointment with someone else sometime later this year, which is the 'earliest' appointment. Ha ha ha. I can't stop laughing sardonically.

The longer I'm a patient, the less impressed I am with specialty care. The pulmonologist only sees me when I'm well, they're way too over booked to absorb me into the schedule when I'm sick, so the ER actually provides primary care for acute asthma. Same deal with the GI doc. If anything goes wrong, they aren't available and it falls to the ER or possibly my primary care doc to try and muddle through. Crazy.

I'm becoming more and more a fan of a good family doctor.

(No I'm not going to the ER for stupid GERD, I'm just making the point that specialists fall short in their care coverage. A lot. I'm baffled as to why this is the predominant care model because from what I can see, it's a lot of money and it doesn't work so well for acute problems.)

Monday, March 26, 2012

Recovering

So I took 5 mg yesterday, after it took me four hours to marshal my energy to get ready for a long anticipated lunch date that I probably should've cancelled, and then after coming home and just crashing into bed, unable to rouse myself even though the hubby had left and I was in charge of the toddler.

Okay, that was a long sentence. It's making me twitch, but I'm just going to apologize and move on. I am not editing that sucker.

Anyway, I break out the steroids if I'm too whacked to parent. Being unable to wake up fully counts as whacked, especially when I'm the only parent in the house.

I also took extra Nexium (which is not good because now I'm shorting myself and may have to go without meds later) and four Advil.

Oh, and I started the next pill pack.

Between the four, something had to help, right?

The abdominal pain began to ease after that--it wasn't just my stomach, but the entire gut. I never achieved a state approaching anything near having energy, but I could get out of bed.

Today the stomach is better, although it's trying to go into acid overdrive after breakfast. I'm hoping I can just mind-over-matter it into submission.

I'm beyond trigger foods at this point, it's now to where I can't eat anything safely. Even though I'm not hungry, I have this drive to put something in my stomach under the misguided notion it will help. Peppermint tea is soothing. Ice cream (Breyer's low carb) feels fantastic and it's a trick my parent with Barrett's has used a lot over the years.

Pepto bismal does jack. I hate Pepto. Every doctor tells me to take it. I don't think they quite understand the nuclear waste properties of my stomach acid. By the time Nexium fails, Pepto just makes me want to throw up, it's like using an eyedropper to put out a bonfire.

Some of this was adrenal, but I'm not sure what the car order was on the Train of Pain. I think GERD was the engine, then tack on the drop in cortisol from the pill pack ending, the tenuous grasp of my HPA axis on reality, cramps, and the hot, overly busy week preceding the whole mess. Something was just seriously off in my body.

For today, I'm debating 5mg. My gut is not twisted in knots, but the fatigue is more than I would like. As in, if I laid down, not sure I would get back up. We'll see.

Sunday, March 25, 2012

Which Came First?

I think things are so rough right now because the pill pack ended and my body is not happy about the hormonal change. It hasn't hit me so hard in quite a while and I'm not sure what's driving it now.

So last night, I had an 'acid attack' also known as GERD gone wild. Or maybe it was the adrenal bit driving the GERD bit. I don't know, but doesn't it seem like every few weeks I'm dealing with nausea and stomach pain? There's a pattern there, just not sure how to interpret it.

Of course, being ill all night means today is not so great. I can't eat. I'm tired. Not feeling hot at all.

At least I didn't throw up, which seemed like a victory at the time. This morning, it feels quite hollow.

Someone asked about Marfan re: the toddler. You know, Abraham Lincoln had Marfan's. He was also quite depressed. This article from The Atlantic is amazing to read.

My great uncle had Marfan's, but he married into the family, so it's not in the bloodline. All this to say I know a teeny bit about Marfan's and she doesn't have the physical markers for it.

There are a lot of tall kids out here, it's the Eastern European genetic stock. They grow them big behind the former Iron Curtain and they come to the US and get bigger. How big is big? When I visited the husband's homeland, I was delighted to find shoe stores display the size 10 model, not the size 5 as we do in the US. (I wear a size 9-10.)

Having traveled to his hometown by way of Paris--where I was a gargantuan American towering over everyone and didn't even bother to try and shop for clothing there--it was like finding my people. The tall and the wide with fantastic Italian leather shoes in MY SIZE FOR ONCE.

Back in the states, the toddler has peers who are taller than her (they are always of Eastern European descent). I also work in the elementary school on occasion and wow, we have tall kids here. Gaggles of them. I think we should make our own growth charts to use because surely there's more than an average amount of kids off the charts for height.

Don't get me wrong, the toddler continues to be taller than most and there aren't a ton of kids her age who match her height, but she's not totally alone either. The motor stuff is just her though, I don't know of any peers having the same issue, but it's not Marfan's either.

I was clumsy, but not until later in childhood. I also had terrible penmanship, but never anything that crossed the line into needing therapy. I wouldn't have called myself coordinated until my 20s (although I had good ability in martial arts in my preteen years, I just couldn't walk without tripping and breaking a bone). Sometimes I think she just got a quadruple dose of all my faults.

Friday, March 23, 2012

Had a Great Day Despite It All

Yesterday was a great day, but I got adrenal for some reason. Back pain, fatigue with weakness.

It was a busy day. I forgot to eat lunch, we were so 'go, go, go'. In the morning I did a bunch of housework, took the toddler to preschool where they had a fantastic animal show. My girl was picked to sit on the tortoise--that picture will totally make the Christmas card this year!

(Not pictured: Hot pink cowgirl hat and pink sunglasses that she considers 'styling'.)

From school we went straight into the playdate from hell. Two lonely onlys with strong alpha tendencies and one middle child who followed the strongest lead. Lots of conflict and hurt feelings. Hours and hours of toddler OMG drama. Love the mom, love her kid, just not with my kid. Could not wait for them to go.

Hubby came home, dinner started, more kids came over. One of my mom friends arrived with her girl to try and tutor me in Photoshop. (I'm hopeless.) Despite the sitters cancelling on me, the girls played together well.

We have two long term house guests, one of whom is my relative and we are jawing on and on about the batshit insanity from their parents and mine. Plus, they are in college so I feel like I have to be more motherly. Not to mention their parents are the epicenter of one of the latest rounds of crazy in my family so I'm trying to offer my support.

Throw in a few snarly technical issues with the hubby's homework for school that would not resolve until I swore like a sailor and starting making death threats to technology in general, and that was my day.

Basically, no down time. Right before dinner a wave of fatigue and weakness hit me really hard--the weakness signals adrenal origin in my experience. I had to go sit down for a few minutes and just breathe.

Oh and it's been super hot all week, which probably doesn't help. I feel like I have a fever from all the heat my body has soaked up.

So, anyway, over did it, I guess and I am paying for it.

On the upside, I am maintaining my weight within a three pound wobble range. I bloat now and gain weight if I eat the wrong things, so I bounce around on the scale. Pretty decent considering the lack of exercise and the amount of carbs that creep into my diet. Coming off the adrenal 'eat whatever you want, if you can stomach it' metabolism is a big adjustment and I'm so relieved to be doing halfway okay.

Another positive, Amazon removed the filter from my book. My appeal managed to reach one of the few employees there with a brain and they agreed, my book doesn't need to be banned. Whether it will ever recover sales or rank or anything, I don't know. I am not too hopeful.

I've been very active over the last few months fighting the censorship efforts of corporations to try and control what content consumers access. It's really scary to realize large corporate interests define reality however they want online with no disclosure to the public--think the Lorax movie and the town walls hiding the wasteland, keeping artificial opulence front and center. See what we want you to see, not what you're looking for. Buy what we want you to buy, not what you need.

As a consumer, I thought I could trust Amazon's search function, that it would pull from the entire site, but it doesn't. They cherry pick, sometimes based on your past shopping history, but sometimes based on a whim or darker intent. It's like if I were to go to Walmart and they hid half their inventory from me, refusing to let me see it, let alone buy it. Worse, I wouldn't even know they've hidden anything, so I couldn't even complain and influence their corporate policy. There's no 'we've filtered some results, click here to see them' notice. This is standard operating procedure online. Consumers do not have free access or freedom of choice about what they see and buy.

I did a teeny tiny bit of work for Google, for about a nanosecond, and their approach to search is very different. Their goal is to serve the user above all else. They only filter spam, irrelevant results and malware. Google would consider hiding relevant results from users a supreme failure in their mission and it would not be tolerated.

I wonder what sites like Amazon are so afraid of?

With regards to the toddler, since there was a question...She doesn't have a diagnosis other than muscle weakness. She has a trick hip that goes out on her for no good reason, she also toes in when she walks, which increases the odds of tripping, and then just overall weakness.

Plus she's like fifteen feet tall, okay maybe not that much, but definitely head and shoulders above her peers. When they line up at preschool, I always chuckle because she pops up like a weed. One in a pink cowgirl hat.

At OT they do tummy time because those muscles apparently didn't fully develop the first time around. It's all just kind of bewildering and we are doing the best we can to give her the full use of her body.

Tuesday, March 20, 2012

A Really Long Update--Grab a Cup of Coffee

Hi. I'm alive. You?

Sick is not the reason for my long silence. I'm sure at least one person was worried and I didn't mean to leave anyone hanging.

Here's what happened...The writing started to do really really really well. As in averaging four star reviews, ranking in the top 100 on Amazon and providing real income and then...Amazon filtered my book out of their search results. Did you know they do that? And don't tell anyone? Not even the author? I found out only because I obsessively watched the meteoric rise of my book and noticed its subsequent disappearance.

They have a bit of history of banning books with filtering. A few years ago, one single employee (so Amazon says) filtered all the GLBT books and hid them from consumers. That filtering has been corrected, or so they say, there's no actual way for consumers to tell if search results are pulled from the entire database or not because Amazon doesn't tell anyone anything.

However, apparently my book is dangerous or too salacious or something and it was filtered. Amazon won't tell me why, of course.

Hello overnight loss of income. Hello despair. Hello trying to appeal my case with Amazon only to find they are staffed with people who make poop eating monkeys look like geniuses.

So anyway, that has been all consuming. I can take a book that doesn't sell--I have some of those. They sell maybe 5 copies a month, no biggie. However, I am not so gracious when a book, poised to break out in a big way, is destroyed on a corporate whim and then said corporation can't even communicate with me about the situation intelligently. It's like winning the lottery and your worst frenemy sets the ticket on fire 'just because'.

Can you believe I have a contractual relationship with a company like that?

As for the cold I had, it was very light. The whole thing was weird, it was like being half sick, half well for a week. I did two days of 5mg and that was all I needed.

I started exercising again this week, although I don't know why I bother. When was the last time I exercised for more than two weeks in a row? 1990 probably and that was back when they didn't have any fancy asthma inhalers.

At this point I half think I should give up on exercise. I don't have the health for consistency and are there any benefits from intermittent work outs? Or just risk of injury?

I won't give up though, just because I like to be active when I feel well, but I'm pretty demoralized. The adrenals don't help. They still tank a bit too with exercise. I generally recover in an hour or two, but man am I tired until my system kicks in, it makes it hard to gird myself mentally to do battle with both my constant de-conditioned state and the lag in the HPA axis. Every time I get somewhere, my health pulls the elliptical out from under me. I fantasize about a year of doing squats on a regular schedule.

I also dream of a boring life without broken ribs, adrenal problems, book banning etc... I really wish my biggest problem was boredom. Wouldn't that be relaxing?

The slowest moving stomach flu on earth is still working it's way through preschool. There are only 10 kids in the toddler's class, which says something about how slow moving this bug is. We are on week six of someone puking at preschool, the latest victim was hit today during art.

The toddler was discharged from physical therapy. I have mixed feelings about it. On the one hand, we've decreased the falling by about 80%. On the other, she's so clumsy, her core is weak, she's just not as strong as she should be. Like I told the OT today, she hurt herself twice this morning before breakfast out of sheer clumsiness. (OT will likely continue until she starts kindergarten.)

Tuesday, March 13, 2012

Surprise

I'm sick. I'm not sure if it's going to settle in for a long torture session or not, but I'm definitely sick. No more waffling or dithering. At least things make sense now.

If it's the bug the toddler had and it manifests at even half power in me, I may be in trouble re: asthma which could mean trouble re:steroids.

The whole thing is a good validation of what is and isn't adrenal for me. The stomach pain is back and I now realize that all the gallbladder pain was somehow related to the adrenals. It improved somewhat with the switch to Nexium, but it really got better once the HPA axis was functioning more normally and hardly bothers me...unless I'm adrenal.

Given how my gallbladder thrashed like it was in a mosh pit, I would not have expected any adrenal connection. But it really wasn't the GERD, which is actually much worse these days--medication is kind of not working.

If I didn't have the adrenal stuff complicating things, I would be pursuing surgery to tighten the sphincter asap. My stomach produces copious amounts of acid and the muscles are too lax and I really miss eating cucumbers, tomatoes, peppers and cabbage.

Monday, March 12, 2012

Bewildered

I took 5mg this morning after waking up to adrenal pain and just not feeling great. I did a little bit better last night after a nap, but it took hours and hours after I woke up to get that improvement.

5mg is really helping, but I wonder if I might actually need 10mg.

Trying not to do that, but it may come down to taking more.

Is my system pooping out on me? Or was last week really too much? Really?

Today I'm not sick. Yesterday I was congested with asthma symptoms. It seems like every other day I feel like I'm coming down with something, which I guess I will now take as a sign of adrenal stress.

Sunday, March 11, 2012

Conflicted

Not doing so hot here. Oh, how I hate typing that. Ugh.

I really can't believe, after a week of intimate contact with the toddler's vomit, that I would get the flu this late in the game. The incubation period can't possibly be that long, can it? Or am I about to get sick with a capital S?

Her congestion is a separate bug, at least that's what the ped says and that's what I've been flirting with for the last several days.

Right now I'm freezing, my BP has dropped and I'm weak with fatigue. Reduced appetite, but at the same time shaking with hunger. Oh and back pain and stomach pain yadda yadda yadda.

I could take 5mg, but I'm not sure I'm really sick. I'm not sure I'm adrenal, or, rather, I can't bring myself to believe it.

If I take 5mg now, I might feel better. Or I might feel worse as it may not be what I need. And then I won't be able to sleep.

Is it really possible that I've lost so much ground? Shouldn't I be past this? I thought I had my happy ending.

Of course, the usual chaos abounds over here. Is your life as crazy as mine? I can't be the only one. Hubby is struggling with his broken rib just as we need to move a lot of furniture between floors to accommodate another house guest. We've run out of bedrooms and had to tear down the toddler's playroom to make room for a bed.

Everyone lives with us. Possibly because we are the only sane relatives they know. We're up to seven people now who have stayed with us for weeks, months or years at a time. Currently, we have the mentally ill relative and then a younger relative relocating to launch a career and go to grad school. All in 1000 square feet.

Any time I seem high strung, just remember how I live in a very small nuthouse and still haven't murdered anyone in their sleep because they put away the dishes and I can't find my colander anymore. I think I should get a billion bonus points for that.

By the way, my favorite spatula has been missing for over a year. I'm not pointing any fingers, just saying, if you don't know where shit goes, it's not helping to shove things into random cupboards.

So, yeah, not feeling great, missing a spatula and tired, yet apprehensive about taking steroids.

Thursday, March 8, 2012

We Are Our Own Medical Soap Opera

So while the toddler was sick, the hubby was walking around like an old man. Turns out, he broke his rib playing hockey the week before. Since he was complaining about being short of breath, I forced him to go get an x-ray.

Meanwhile, the mentally ill relative that lives with us when the rest of their family can't stand them, caught the bug the toddler had. Which is bad as they have underlying medical issues and are vulnerable.

We are holding on, though, by the skin of our teeth. Everyone is drinking pedialyte now.

I am slowly getting my energy back. I am still puzzled about why I was so adrenal, but do have a working theory.

I worked out rather hard about two days before the toddler got sick. Not a problem in of itself, but I was rather sore and strained and then you add in zero sleep the night she was sick and I think the two converged into a wave of suck.

I may also be fighting a respiratory bug. I just feel under the weather but there's no real obvious reason why.

I do think that food poisoning was the same bug that struck the toddler, so I think I'm safe. So glad there's a silver lining on this one!

Tuesday, March 6, 2012

Crazy Spacey

Literally 15 minutes before we would hit the ER deadline the ped gave us, the toddler finally stopped vomiting long enough to hold down some pedialyte.

She's still not eating much or drinking as much as I would like, but at least my house is no longer being hosed in vomit and, for that, I am grateful.

As it turns out, vomiting toddlers are about as accurate as drunken frat boys when it comes to aim.

So now my house smells like Lysol and, surprisingly, I couldn't tell you which is worse; the acrid carcinogenic scent of Lysol or the sour stench of stomach flu. Both have me pulling my shirt over my mouth.

And not to make this sound like an Oscar acceptance speech or anything, but I am also so grateful the laundry has stopped. Six loads yesterday and then we had to wash things again because they still smelled. The toddler ran out of clothes and we dressed her like a little hobo clown in ill-fitting, mismatched scraps of things from the bottom of her dresser.

Also, if you're wondering why I'm going on and on about this, it's because we're traumatized over here. From seeing our girl so sick and just the tsunami of bodily fluids that attacked us from behind. The hubby and I have been fist-bumping and saying 'we survived the stomach flu of 2012'. At this rate, we'll be making up commemorative T-shirts.

Still this was better than the flu of '07, that one had us all sick at the same time. Going to the bathroom was like a game of musical chairs, one where the loser had to go outside to throw up and then rinse off the neighbor's lawn.

This is all probably more than you wanted to know. I'm too ptsd to be sorry--when your kids do this to you, you'll understand the internet is really for parents to talk about the stomach flu. In detail. No, really.

I continue to hope this is the bug I had a few weeks ago. I'm not sick yet but am really run down adrenal-wise, which puzzles me. Of course, we were up all night and are probably still working with a sleep deficit. Maybe tomorrow will be better.

Monday, March 5, 2012

50/50 Odds

The toddler has a bad case of the stomach flu, vomiting about every 15 to 30 minutes since 2 am, which means it's been about 7 hours now. There's nothing in her stomach and she's starting to produce small amounts of blood from the irritation.

She just looked at me and moaned, "Mommy, I'm a poor thing."

My poor baby. This is the sickest she's been since she was two.

A couple more hours like this and dehydration will become an issue. She's not been able to keep down any fluids, despite begging for them.

I have no idea if I'll get it. It's rather similar to the 'food poisoning' I had so I don't know if we just have the slowest moving stomach flu in history working its way through our family or if I'm deluding myself.

But the adrenals are putting out feelers. I have muscle spasms all over my body, way out of proportion to the work out I did two days ago. Very much like steroid withdrawal, only I'm not coming off steroids so I assume it must be a manifestation of inadequate stress response. And I'm tired. Not sure yet if I'll 'bounce' or sink.