Wednesday, March 30, 2011

Winning with Exercise: A Question for the Audience

I tapered down to 2 1/2 pills and it has gone well. Well, okay, the day isn't even over yet, but I haven't had to drink pickle juice either. So far so good. I feel optimistic.

Although I did forget to eat and I think I might be a little loopier than I realize, based on how hard it's been for me to get this post under control. It meanders a bit and I can't seem to reign it in.

Sorry!

I really do think the steroids are on their way out. It's just an issue of not going too fast or too slow and not screwing it up.

Screwing it up is really easy.

I try not to think about that.

Here is my question.

Exercise is a problem. Even permanent adrenal patients struggle with how to handle exercise as doctors haven't figured it out either and have little to no advice.

Most patients end up increasing their dose and experimenting with various dosages (or they don't exercise at all). It's a bit like roulette because if they up dose in anticipation of the workout and then don't exercise (which happened to one patient I know) it's not pretty and if they don't up dose enough, then they tank which is also bad. It's hard to find a good balance.

I have not yet ever updosed for exercise (as far as I can remember and there is this niggling feeling that maybe I have updosed but am not remembering, so, you know, don't hold me to this) but...

Exercise wipes me out. Really wipes the floor with me. I have an energy hangover the next day and have a hard time functioning due to the 'fatigue flu'. In terms of strength and aerobic fitness, I'm up for it, but the energy production, or whatever its official name, is strained beyond carrying capacity.

This concerns me on a couple levels.

One, I take it as a sign that my HPA axis goes only so far and that there's an opening for more trouble down the line, especially if I get ambitious and try my favorite 'run 400 stairs, then run/walk a mile and do a bunch of push-ups' workout.

Exercise seems to have triggered this latest collapse of the HPA axis (beyond the original insult of being suppressed and having the stomach flu at the same time with doctors refusing to test my cortisol levels and it is only by sheer luck that my doctors didn't kill me and I had the number of a doc who did understand, at least a little, this adrenal shiznit. Why, yes, I am bitter.).

Also what if I get sick? That would be bad and I've developed an impressive hand sanitizer habit as a result. (I have been so so so lucky on the sick front, the toddler has had cold after cold and I haven't really gotten sick except for a couple flirtations with a sore throat. My luck can't last, I know this, but I'm just praying that it holds until I'm past the worst of the adrenal stuff.)

Two, I wonder if I should start updosing before exercise even if I happen to wean completely off steroids and definitely during the taper period.

But how much should I take? How much of a boost do I need? What's the rubric I should use to gauge things?

At 20 mg I still struggled with exercise. So then I think I should try 30mg and see, but that's kind of a high dose now that I seem to have a decently functional HPA axis.

I have no idea how to approach it. Do you?

The obvious option is to not exercise, but that's a tough one because it helps control the insulin resistance. Exercise also helps my lungs cope better with asthma. If steroids hadn't started derailing my life on a continual basis in my 20s, I bet I would be one of those triathalon (sp?) people or a serious amateur swing dancer. I'm an active person being suffocated by chronic health issues.

I can pull back and certainly am not trying to exercise every day right now. I can decrease intensity, but that can be sort of useless and, ironically, will result in deconditioning.

It's not really a win-win situation. It's more of a 'take the good with the bad' thing. How do I achieve the most good and the least bad?

Tuesday, March 29, 2011

7 Ways to Make Money When You're Too Sick to Work

There's a lot more detail involved in the suggestions below than I have time to get into, so realize this is just a bare bones list of ideas. If you are interested in any of them and you are struggling with chronic illness, I am happy to talk with you off blog and give you what advice I can.

You can email me at pissedoffpatient AT gmail Dotcom.

Nothing is simple or easy about making money, but, thankfully, we do live in a time where the internet offers an ability to make an income no matter what your health status is.

The key factors that influence money making ability with illness are:

-How frequently the illness interferes with your ability to work.
-How hands-on the business model is, i.e. when your health issues flare, they take the business down too, which is bad.
-The availability of funds to outsource tasks when you can't do them whether it's due to illness or a lack of expertise.
-The business environment, it can change or be easy or hard. Hard + illness is almost impossible, at least in my experience. Managing change is also difficult. Easy never lasts.
-How well you protect your intellectual property. Theft is a big issue, especially online.
-How well you market your business.
-Skills you need to learn to run the business.
-Taxes.

1. Sign up for the Amazon Affiliate (AA) program. Start small and just email your friends and family the link asking them to use it to shop. Send a reminder during the holidays.

Go big by setting up independent blogs to sell specific products using the AA program (Tip: Sell expensive products, commission on books is too low). Slap that Amazon ad up on every website you run.

Pitfall: Some states have passed laws to collect sales tax in the state where the commission is issued on top of sales tax already paid, resulting in a double taxation situation. Amazon, to date, has not prevailed in court on this issue and has had to close their affiliate program in those states. There are workarounds, but they are in a gray area legally. Keep an eye on what is going on at your state capitol on this issue.

2.Write and sell ebooks on Amazon and other sites. Go small with short articles. Go big with books.

Pitfalls: The writing needs to be stellar to make a book work, especially in fiction. Non fiction is more forgiving; if you write for poop, but the information is good, almost all will be forgiven by readers. Be sure to have someone edit your work, either a professional you pay or a friend whose sense of grammar you trust.

Upside, no double taxation issue as far as I know.

3.Sell used books via Half.com or Amazon.com. Go small by culling books from your collection to dip your toe in. (I had a book worth $200, although no one has yet bought it!) Go big by buying and building an inventory. Look for non fiction and popular books.

Selling books requires the ability to meet shipping deadlines to preserve customer satisfaction rating. You must never ever ever ever ever ship a book late or your online reputation will not recover and will scare off customers. This is where having a healthy spouse to run to the post office would come in handy.

You also need to be able to get out to find inventory and this can be rough as book selling is a competitive, cut throat business. Although I have an uncle who makes several multiples of six figures a year doing this full time (and getting up at 4 am or sleeping in his car to be first at a sale).

The good thing is, if you can't do a full fledged business, as long as you keep acquiring inventory when you can and listing it when you can, you will make some money. Just not six figures.

It's also good to market your inventory beyond just listing it for sale. I've done some minimal marketing of my books with good response.

4.Learn a craft or take a craft you already know and open an Etsy store. You retain a lot of control over when you work and what you charge. You will need a marketing plan though beyond just listing products on Etsy to help customers find you.

5.Create a product and go into business. Look for something with low start-up costs, that capitalizes on skill sets you already have. Also, look for process automation so you aren't necessarily running production, shipping, billing and marketing when ill. This kind of hands off product business is possible, believe it or not. It takes some thinking and planning, but it can be done. This is the phase I am in, actually and I'm not taking my advice as I'm venturing into an area where I zero experience. Should be interesting.

6.Write for revenue sharing sites. The bad thing about this income stream is that it takes forever to get income going and Google likes to change the business model a lot, which can destroy your earnings either permanently or temporarily. The internet also seems to be moving away from this model, but I don't see how they'll be able to eliminate it (it's a cash cow) and expect it to be around in some form or another for a long time.

If you can crank out a lot of decent content fast enough to be one step ahead of Google, you can create a passive income stream that will continue to earn when you are too ill to work. This has been my financial salvation for over a year.

Suite101 and Hubpages are the places I would start first. Recognize that Google did a major content smack down recently and earnings are pretty awful right now, but the websites and their writers are retooling and things should improve.

Benchmark: You won't have any idea what the potential is for you personally with ad revenue until you've got at least 100 different articles up and fully understand SEO (you'll know when you know it). Until you reach that point, you will make pennies which is normal. Lots of people quit and give up, not recognizing that this business model is all about volume combined with SEO.

It is not a get rich quick deal and lots of people, the majority, fail miserably.

7.Write for companies like Demand Studios for upfront pay. Demand Studios is tricky to work with (google Demand Studios Sucks to see what I mean), the learning curve is so big there, I would suggest you start at Suite101 as a training ground. Editor quality and professionalism is uneven and management doesn't seem to care. The power gradient of their business practices is against the writer.

However, if you are scrupulous about producing great work and are reliably professional, you can be tapped for projects that pay as much as $80-$100 as opposed to the more common $15 or $20.

These are also all deadline projects which can be a problem when trying to work with illness. The nice thing is, so far, there's no penalty for missed deadlines (except maybe for the special assignments for which you were hand-picked by management), the article just goes back into the writer pool.

Seed.com is another place to scope out, but there you write the article without knowing whether or not they'll take it, which is a pain. Seed.com is like a giant mosh pit of writer groupies, all throwing their pages up on the stage screaming 'pick me, pick me' and the editors sift through and decide which one of hundreds they like. The odds don't favor individual writers. But it is a professional writing credit that can go on a resume and you might be exactly what they are looking for.

Whatever you do stay away from private clients. They are whiny and demanding and have a penchant for impossible deadlines, not compatible to working with chronic illness.

Monday, March 28, 2011

Lickety Split

1.Hubby and I are slowly turning the tide against three. She still fights every. little. thing., but it's more token resistance now that she's figured out we mean what we say and we are doing what we say come hell or high water.

Of course, by typing that, I've completely jinxed us. Everything will now go to pot.

Good thing she's cute.

2.All my pregnancy stretch marks are an angry red. Interesting. Normally they are not like that. The last time they looked red was when I had cystic acne and was moodier than a PMSing Eeyore and had the most painless taper of my life. I wonder if I'm now going to be cycling rapidly through too much and too little for all around misery (fun!).

Later this week, I'll try a taper of 1/2 a pill just to see what it does (or doesn't) do.

3. I continue to think all this steroid madness is why I can't lose weight. I'm up about 5lbs right now which I think is all water as I'm really bloated. I wonder when things will even out enough to ever support weight loss again? Gah. Hopefully not more than a few more months. Otherwise it's gonna suck ass.

Sunday, March 27, 2011

Prednisone Does Not Make People High (Remix)

Over on Queen of Optimism, I read she's been told by ER docs the prednisone she uses to preserve her ability to walk can cause euphoria, which is maybe her problem.

Excuse me.

I need to go beat my head against a wall.

It's more rewarding than dealing with doctors.

Clearly this idea that steroids = mania/euphoria is pervasive in medical training.

My own pulmonologist tried to tell me the reason I kept taking steroids was for the energy boost.

Key point the doc didn't bother to ever investigate? My am cortisol was a 6 and that was with steroids in my bloodstream. Without the external prop up from prednisone it was less than a 6.

Low cortisol = bad.

When prednisone restores the ability to move your body half way decently, you are at such a deficit physiologically that it would be hard for prednisone to make you manic.

In those situations prednisone = normal functionality. Not euophoric mania. Okay?

It is not that damn hard.

Please get a f*cking clue before someone really gets hurt.

Absolutely unacceptable.

Friday, March 25, 2011

Lots of Thoughts

Lot 1

The age of three and a half is developmental armageddon. I never understood why parents spoke of three with such fear.

I do now.

Oh Lordy do I understand.

We are so outclassed by our pint sized nuclear reactor, it's not funny.

Today she woke up, took off all her clothes and came to our bed. It was very cold in our uninsulated dormer/bed nook, so I asked to go get her shirt. She refused and stormed off to her room where she had a good 45 minute meltdown.

I reiterated she could come join me any time so long as she brought her shirt and went back to bed.

This is the first time a tantrum has meant more sleep for me.

The rest of the morning was spent dealing with tantrums over getting dressed to go to a play date. We had about 4 hours of non stop conflict today*. I am surprised my blood pressure didn't knock my eyeballs out of their sockets.

It was a tough morning. Hold me.

Thankfully, I seem to have gotten through to her and the afternoon (knock on wood) has been pleasant. The toddler suggested we go out to lunch and so we did even though it meant paying mostly in quarters as I didn't have cash in my wallet. Then she sounded out the word exit and asked me what it meant, which was priceless.

*Yes this is a lot, but it's her personality and she's really invested right now in opposing everything on principal alone. "Want some chocolate" nets a sustained note of 'no' that an opera singer would envy. At the play date, she was so angry about taking turns, she body slammed the slide, then slid to the floor in a heap to scream and cry.

If you are horrified by this, you don't have a three year old. Actually, I'm horrified, but it is all, I am assured by those who have been there, normal.

I'm sure she'll be fine, hubby and I may be in a fetal position, drooling when it's all over, but the toddler will be fine.

Lot 2

Tired, but I can get up in the morning without feeling like I'm stuck in quicksand. Lots of muscle cramps which, for the first time, kept me up into the wee hours.

I'm bloated to the point where it hurts.

The working theory is the adrenal glands have never liked it when a birth control pack ended and that was this week.

Plus last week, I had a pretty significant asthma episode and even though that had a happy resolution, asthma is a lot of physical work. It's tiring, like running a marathon with your lungs.

I bet that contributed to things, because didn't it seem like I went out of town on a cloud of optimism and came back a negative Nelly? That trip seemed to be when things started to change.

Updosing to 20 mg helped but when I went back to 15mg, I lost ground again. So we'll see what shakes out.

Lot 3

Sometimes life gives you sour lemons filled with worms and sometimes life makes the lemonade for you, sells it at a profit and dumps money in your lap.

I have to be vague due to some legal confidentiality stuff (I know! What is up with all the lawyers lately?), but I had a modest and random business success. Unfortunately it was a one-time thing and now the mad scramble to start over begins.

My minor success has resulted in a complete loss of what little income I had. That sounds terrible, I know, but it really is a good thing, it's just not an all around financial problem-solver situation.

I think the correct spin is something like 'I am now in a position to commit to more promising opportunities.'

It would all make sense if I could just explain it, but I signed the legalese saying I wouldn't.

Despite the good news, the reality is I haven't actually ever been able to generate a full-time income. Just a pretty wimpy less than part-time one. The economy shifted under my feet and then I ended up in the hospital last year kicking off the adrenal Trail of Tears that started this blog. If the economy hadn't completely tanked in the area I was building a business, I could probably generate a full time income x 3 even with the adrenal wipe out, but I couldn't overcome the one-two punch.

Timing is everything and mine sucked.

I called my friend last night to squeal and she told me, "Only you would be wrongfully sued for a huge amount of money only to turn around and end up with a random business deal you never saw coming."

"My life is really weird," I said.

"Yes it is. This sh*t only happens to you."

Lot 4

So now I need to rebuild my income. I have some ideas. I hope I can execute them both business logistics-wise and in terms of having the energy/health to follow through.

It gives me something to do that takes me outside of my situation. Which I need. This is something I had realized earlier this week. I need a project that inspires me and focuses me outward and forward. For my own mental health.

I wish I had a real j-o-b, but I'm underwhelmed with the job market. Salaries have nosedived while the cost of living has gone up. I saw a job ad for what I used to do at 1/2 the salary, a rate I believe is lower than what Target and Walmart pay people. When I looked at the average salary for my field where I'm located, it had dropped $20,000 since the last time I looked at it. Yet it's supposed to be a growing area of employment.

And FYI childcare still costs $900 a month in my area (I have scoped out over 10 daycares on the off chance I find a full time job somewhere--it is hideously expensive). Gas is also it's own chunk of change and projected to go up and I need an income that will cover gas, child care and frivolous things like my student loan payments. Those jobs don't seem to exist in my area*.

We're winning the race to the bottom!

Based on how 3 1/2 is going, I honestly would love nothing more than to pay $900 a month for child care. The toddler is an extrovert and gets bored at home. So she would blossom and I wouldn't go insane. But no dice in this economy.

All I can seem to manage are lemons which may or may not have been picked at the right time.

*We are working/hoping on a move but it's down the road.

Wednesday, March 23, 2011

In a Pickle Stream of Consciousness

The current situation is reminiscent of last August. When I just didn't feel good, but I didn't feel bad enough to take steroids.

I couldn't figure out what was wrong.

Then I crashed hard in September and have been on steroids ever since.

It's not the fatigue that's so bad. It's the weakness and the inertia it induces. I feel like a wet noodle. Just flopping all over the place.

The other day I kept the toddler home from school due to the boogies of doom. As it turned out, I was more in need of a sick day than she was.

I couldn't get up.

Couldn't keep my eyes open.

Couldn't get out of bed.

Three hours later, I had managed to make it downstairs and feed the toddler and take a shower. I thought, we'll go to the post office and the mall to get some vitamins and spend some quarters on rides.

I got up.

And sat right back down.

I tried again.

I sat down again.

Hmmm. Maybe I should've eaten something for breakfast.

Maybe I shouldn't skip meals.

Maybe it's pickle time.

Yep. BP is a little low.

Pickle juice tastes good to me now. Sometimes I even crave it. I think I've blogged that before, but I am so appalled by it, I can't let it go. The toddler thinks pickle juice is an actual beverage and asks for it.

It's normal to her.

Oh my God.

We chased the pickle juice with some suckers. I felt mildly better, but not enough to risk going anywhere.

"Mommy, let's go the post office."

"Can't, bean. Mommy doesn't feel good. Sorry."

Hubby burned dinner so I could rest. Somehow my appetite found its way home and I was ravenous, scarfing down over done (bunless) burgers and rutabaga fries like I'd never seen food before.

Today I updosed back to 20mg to see if that will stop the downward slide.

The thing is, I clearly had too much in my system at 20mg and tapering to 15mg was an improvement for once. So why insufficient now?

This makes me wonder if the HPA axis functionality is uneven. Like it isn't strong enough to keep me going for long periods of time. Or it's randomly coming online and then just free falling.

I know with permanent Secondary Adrenal Insufficiency (which is most like what I have) there is some level of cortisol and ACTH production but it's impaired and can fluctuate.

I wish this would end so I could go back to my life. I thought this was going well. It's not.

Tuesday, March 22, 2011

Prison

Someone went to prison today, leaving behind a family including small children. I don't know them well, but I know people who know them well.

What struck me, hearing everything vicariously, was the support from the community. People helping out, bringing food, offering a hand, organizing a visit schedule, babysitting. That family is not alone, not by a long shot.

For the last year, I've been in a prison no one ever visits.

A few weeks ago, I wrote in an email to my mom "The taper is going well."

I was excited to write that and wanted to give an upbeat interpretation of steroid tapering as she saw me struggling way too hard over Christmas.

She wrote back.

"What taper?"

This after listening to me rant and rave about the cortisol challenge results and watching me unable to do much more than sit due to muscle pain.

She had been concerned. Now it's "What taper?"

My father is similar. "You're still on steroids?" He has no idea.

I don't talk about the medical stuff a lot to anyone, not even the hubby. No one understands adrenal sh*t. As maligned as fibro is, it's an easier sell than adrenal problems. There's a national organization. There's a catch phrase that instantly makes the whole thing understandable "arthritis of the muscles."

Adrenals don't have a catch phrase. Unless you want to count the plethora of doctors who've said "It can't be your adrenals" or "No, I won't test your cortisol."

The truth is, I've been in solitary confinement for a year. I don't know how long my sentence is and there is zero support.

Maybe it's because I haven't talked to my family about it much. This weekend I tried to nonchalantly bring it up when my father asked me why I was eating again after we'd just had a big brunch.

"I didn't eat anything this morning and I think my blood sugar got a little low. The steroids can do that and I didn't have any carbs at brunch."

Crickets chirped in the silence.

Awkward, awkward silence.

Don't care. Don't know. Don't want to know.

Welcome to solitary day 365 and counting.

Monday, March 21, 2011

I Suck and I Know It

If my posts are dull, repetitive or otherwise lame, it's because I'm tired.

I have not been the patient blogger I want to be.

Nothing I can do about it.

So if I suck as a blogger or a writer.

If there are typos.

It's not because I don't care, I do, it's that I can't do more than what you read. Literally can't do more.

And when I do feel well, I spend that time with my family and focusing on all the things that have been waiting for my attention for far too long.

When I am tired, I sit and therefore I blog.

Like drunk texting.

Only sick.

Sunday, March 20, 2011

Title Unknown

In the 1980s, my family sponsored a succession of exchange students from Japan. Brothers who became part of our family. They are okay, although one has had to move in with another due to radioactive fall out.

But they are okay.

Relief.

I continue to do okay with this taper.

Kind of.

Tired. A lot tired. Too much tired.

But it will pass, right?

Friday, March 18, 2011

A Tapering We Will Go

Full disclosure, I ate a lot of jelly beans yesterday. The Starburst sour ones which are like crack to me.

I finally rallied my inner will power and handed the bag over to the hubby with instructions to take it out of the house before I started acting like Golem with the ring.

So basically, today, I feel like poop. Too much sugar.

When will I learn?

Taper is going well. What is so interesting to me is all the subtle signs that things are still adjusting.

For instance, when I wake up in the morning, I wake up to muscle spasms. They aren't painful, but prohibit me from flexing or stretching until the steroids hit the bloodstream. This says to me my body is still missing those extra 5mg of Hydrocortisone, as before I tapered, I was fine. No symptoms at all. I could even take my dose late by an hour and didn't feel a thing. Now my body wakes me up if I miss the regular dose time and protests.

At night I notice things get a bit twitchy too.

Energy is a million times better than all the other tapers I've done for the past year, but I still tire out easily and have slowed down somewhat. I don't turn down the opportunity to nap, although I could probably power through.

I anticipate returning to strict low carb as well as daily workouts this week and starting up the plyometrics again. The only thing is my knee is kind of jacked up and bothering me, so we'll see if I can jump as much as I want to.

The cystic acne is completely gone, but I will have lots of discolored skin from the cysts. Maybe at some point I can afford some peels at the dermatologist to slough off the worst of it. My skin doesn't pit or scar scar, it discolors. I like to think it's not too bad since I am, after all, mole girl with freckles and cafe au lait marks mixed in with the moles. I don't think anyone expects me to be one color.

But I know which spots are 'scarring' and which aren't and it bothers me. A lot.

I also know how good my skin can look and this? Ain't it.

This past year has aged me. The heavy toll is stamped all over my skin. It makes me sad.

I used to look younger than I was, now I think I look older.

Wednesday, March 16, 2011

Tired and a Rant on Radiation Exposure

I was looking for some nice family R&R the last few days. What I didn't expect was the cucumber melon chemical concoction the hotel liked to, apparently, bathe in. The smell was so bad, my lungs immediately shriveled up and tried to hang themselves off my clavicles. From a 0 to a 8 on the imminent asthma attack scale.

That sucked.

Luckily, we were able to leave all the windows open (and crank the heat since it was only 30F out) for several hours and that solved the problem.

Well, that and some serious rescue inhaler use.

We had a good time overall. It was a cheapskate vacation, we ate using gift cards, paid for the hotel room with reward points that were probably 5 years old etc...

I asked the toddler what her favorite part was. Was it the concert*? The toy window shopping (which she is so good about)? The restaurant? The pool? Playing hide and seek in our strangely large hotel room? Jumping on the hotel bed? What?

She thought for a moment, seriously contemplating the question and then said, "Ummm, my favorite part was, ummmm sleeping!"

Okay then.

I thought the concert was fantastic. I think I'm a Dan Zanes groupie. Which is probably inappropriate. But I had a good time!

Okay, switching gears and going completely off track.

Radiation from Japan is not going to kill us, okay?

I have been amazed at the panic I've seen, primarily from Americans, all over the internet.

Think, people.

Did Chernobyl kill anyone in the US?

NO!

Did Americans have to take potassium iodide pills?

NO!

FYI those fall out maps you've seen on the internet that imply we're all going to die? Utter bullsh*t. I believe they are old Cold War fall out maps which are a whole other kettle of fish. Not the same at all. The people using those maps usually have something to sell you.

The impact of Japan's nuclear meltdowns on the US is minimal. Really. I've sat calculating exposure rates and combing media reports as well as textbooks on Chernobyl and nuclear power over the last few days. Unless some other apocalyptic event occurs that ups the ante, nothing bad will happen to the US.

So please stop worrying about the US and focus on the people who really need our help; the Japanese.

Thank you.


* Which she required noise reduction head phones to tolerate, but gamely says she enjoyed even though she kept asking to go home.

Sunday, March 13, 2011

Respite Bad and Good

It occurred to me the other day that I have been all mommy all the time for..I don't know how long.

Long enough for tics to appear. Especially when the hubby left me to toddler wrangle all day yesterday for some kind of Bible camp thing.

Cue the toddler upping the ante with psychotic, yet surprisingly age appropriate, behavior.

We are playing discipline chicken around these parts.

We blink first, by the way.

My friends tell me this is normal. Actually they don't say normal, they say "Welcome to three. It sucks."

So I ran away for the day today.

Went to the mall and tried to find clothes for the toddler.

Tip: If you and your spouse are tall, your kid is going to be tall. Buy 2 sizes for each season because retailers do not restock seasonal clothes. If your kid, like mine, consistently grows out of clothing right at the end of the season, good luck finding anything in stores they can wear. And you can't count on the sales rack either.

Case in point?

The mall has become bikini land.

Not the sweaters and long sleeved country I'm looking for.

Even the clearance is Spring-y.

7 stores later, I had nothing that would end up fitting. (I did eventually hit pay dirt with Land's End online--of course this is after I bought a bunch of crap that doesn't fit and now have to go back to the mall to return, which...ugh.)

Then I went to the grocery store.

Followed by bed. Because the asthma was acting up and the adrenal glands were pissed.

A little too much mall.

So, yeah, no longer looking to speed up the taper. Today was harder than I expected. Oddly, it is not steroid withdrawal type stuff at all, it's all symptoms of insufficiency (by how I categorize them). Weird. It's different this time. Don't know if that is good or bad yet.

Tomorrow we blow out of town for a quickie get away. When I was in the midst of being wrongfully sued by a large, multi-billion dollar corporation and having difficulty finding a lawyer, I had to come up with something to look forward to once the lawsuit resolved. Something to keep me looking forward, to remind me that this too, shall pass, that today is not forever.

So this getaway was it. The case dismissal in my favor came in the mail last week, so perfect timing. We're going to a concert by a children's musician we like. Tickets were cheap and proceeds go to support pediatric cancer research. Plus we're stopping at the hot dog stand of my childhood and staying at a hotel with a pool (kids live for this).

I'm looking forward to it.

Assuming I can get it together enough to pack.

Thursday, March 10, 2011

How Low Can I Go? Please Advise

I think it's safe to say the HPA axis is ON and ready for action.

The taper down to 15mg is done.

Just like that.

A little fatigue.

A couple naps.

One or two muscle cramps.

And wham bam DONE.

I even went shopping!

Today we're going to the library!

Tomorrow I'm going to do a light workout because I don't think this taper will demand complete deconditioning.

So.

When should I taper again?

I'd like to do it before I get cystic acne all over the place and can out-melancholy Eeyore.

Also, if the HPA axis is finally fully functional, can I taper faster? Like next week go down to 10mg and then 5 and then STOP within the next 14 days?

My brain seems to be up for it for the first time in a year.

I will call the endo but I don't think they have any idea and will just tell me to do what I think is best (which makes me nervous, because when it comes to tapers Speedy Gonzalez has nothing on me. Do you know how often I have to sit on my hands to keep myself from doing something dumb with the taper? A lot. Faster is not better, but that seems to be my default setting.).

In these situations it always seems that the information from patients who have been there, done that is much more helpful.

I want to taper but not so fast I lose ground. How can I balance that?

Wednesday, March 9, 2011

Unstirring the Pot

This taper is going very well.

I am happy.

The fatigue is okay, but I am not pushing myself either. Spent several hours in bed while the toddler watched way too much PBS. Ate a lot of pickles and they helped. (Can they be prescribed? They are really a miracle in vinegar.)

My mood was definitely affected by... not sure what.

Is the HPA axis recovering and now I have too much cortisol?

Or is it just from being on steroids for so long?

Although typically mood issues caused by steroids occur at higher doses and early on.

Not at the sub-physiologic dose I'm taking, which, if the medical literature is to be believed, is about as potent as a homeopathic remedy when it comes to impacting mood.

(Of course, this is not exactly a rigorously studied area of medicine.)

But I've never had The Crazyee before. I gather it's not expected to happen to someone in my shoes, yet here I am.

Dear Universe: Just once, can I just be like every other patient? In a good way? Please?

I feel much much MUCH better now that I've tapered. Oh my God. So much better. I'm not losing it, it's not me, it's the meds.

(Don't tell me that's what they all say.)

It is scary to realize how far down the abyss I fell without realizing it was the steroids.

I mean, yeah, my life sucks.

But it's sucked before and I've coped. So?

Yeah, steroids stir the crazy pot.

Be careful.

Tuesday, March 8, 2011

Altered State

Woowee. I feel like, sooooo high right now y'all.

Out of my body.

Light headed.

Foggy.

Nauseated.

Diarrhea.

My arms are too heavy to lift. If not for the keyboard, I think they would flop uselessly to the floor.

No back/flank/stomach pain. Which I did have yesterday.None today. At least not yet.

I drank a 1/2 cup of pickle juice.

Had a sucker for some sugar.

And chased it with caffeine from a Coke Zero.

Hoping that perks me up. Soon.

What a difference 2.5 mg makes.

17.5mg was just mild fatigue and unpleasantness.

15mg is like getting hit with a sledgehammer and viewing my body from above.

Wonder what the drive to pick up the toddler from pschool will be like?

Taper Calculations

Best line of the day yesterday was from hubby.

"Can you please do less messy crafts when you are tapering?" Followed by an exasperated sigh.

Sorry hubby. The toddler is learning how to use scissors and the house is buried in slivers of paper. Has nothing to do with the intersection of steroid tapers and crafts. The craft we did, making Happy Spring cards for family, was a clean craft. I swear.

She just started running with scissors. (Made for kids. Dull blades etc...)

It made her happy.

I was tired.

There are worse things than too much homemade confetti.

The hubby, being a bit OCD, spent quite some time picking paper up by hand and shaking his head at the shame of it all.

All I could do was laugh. Because it's funny.

So this taper has been better than all the rest. I did--had to--nap, but no muscle pain so far. This makes me brave and daring.

Today, I'll try 15mg.

Then Wed, back up to 20mg as I have to work and don't want to push this too much.

And then back down to 15mg. If it goes well, I won't do alternate day at all. Maybe I'll only give 15mg a month before it gets the axe.

Anything can happen.

Sunday, March 6, 2011

Weight of a Different Scale

Reasons TO taper before the end of March

1.Acne.
2.Mood.
3.Possible cause of stalled weight loss.
4.Haven't felt on the verge of passing out except for one time and it was not as strong as previous episodes.
5.Blood pressure seems to have stopped tanking.
6.No muscle pain or cramping.

Out of all of these 1&2 are pushing me the most to consider a taper. Granted, I have some serious personal stress going on, which may mean the mood (and acne!) has nothing to do with the steroids. But I like to think it's the steroids. Gives me hope of an easy solution.

Reasons NOT to taper before the end of March

1.Upcoming family attendance of children's concert.
2.Experiencing post exercise fatigue to the point of not being functional for more than 24 hours. (Guess where I spent the weekend? In bed.)
3.Inability to exercise.
4.Have had some flank pain here and there.
5.Skin pigment seems to be darkening.
6.It will hurt, don't feel ready for the pain.
7.Recent loss of appetite.

Most concerned about #1 which can be accommodated by updosing. 6 bothers me, I don't know if I can face the pain. Although it might not hurt, right?

7 could just be due to low carbing. Might not be adrenal at all. I can cut back on exercise. Not like I haven't totally deconditioned before and come back (Although every time there's an injury, which knock-on-wood I've avoided docs thus far. Massage therapy is a handy thing to know sometimes, especially if your piriformis is pythoning your sciatic nerve for a week.).

Even though it seems like I just got back on my feet and am living a halfway normal life, I am seriously considering dropping from 20 to 17.5 of hydrocortisone on an alternate day basis this week, just to see what shakes out.

Is it just me or does that look like a bigger drop than it is?

I don't know if I can do it.

Friday, March 4, 2011

Blame Hitler for Obesity

I hate listening to radio interviews because they are so slow compared to how fast I can read. It's better if something is on television so I can see and hear (although I often read with the TV on, because even TV is too slow) but radio really sucks for me. Like life at sloth speed. It makes me twitch.

That being said, I'm glad I sucked it up and plowed through these two radio interviews with Gary Taubes.

The first, explains why obesity is Hitler's fault. The second, explains why I shouldn't eat after a workout. I'd previously been advised to eat a sweet potato after the metabolic conditioning workouts, I think I'm going to pass based on this interview as it seems to defeat the goal.



Thursday, March 3, 2011

Toddler on Ice

The toddler is flunking physical therapy. I got the progress report from the PT and next to every single goal is FAIL.

She continues to fall down the stairs as well.

I watch her very closely, but she is a very talented klutz. Olympic level. Definite future as a prat fall professional.

There is still no diagnosis which hasn't bothered me too much, but if the lack of progress continues, I will become more concerned.

It was suggested by the PT that we get her into ice skating lessons, which the toddler had her first one last night.

I didn't understand why the PT was so adamant about skating until I saw it with my own eyes. What a revelation to see the toddler on the ice*. The balance demands of skates, the need to get up from (constant) falls, to shift weight from side to side. All things the toddler works on in therapy, all things I can't get her to do at home because PT exercises with mommy are about as much fun as eating raw broccoli.

(Note: Coaxing children in the throes of the 'no' phase to do anything is impossible.)

The only thing missing is stair work.

If skating (and soccer, swimming, dancing and walking) + PT doesn't help, then I don't know what will.


*The not so great revelation? It is very obvious how far behind her peers she is. Not a huge deal now, but elementary school team selection is going to be a heart-breaker at this rate.

Wednesday, March 2, 2011

Insulin Poisoning or Why You Really Don't Want Diabetes

No weight loss.

After three weeks of serious focus and effort.

(Barring the ice cream, but even then we split the pint three ways, not a big enough sin to destroy weight loss.)

Excuse me while I take a moment to swear, kick puppies and smash expensive crystal into a fireplace.

I've toned the hell out of what I can tone, but that is worthless. When I taper at the end of the month, exercise will be difficult if not impossible and I'll flab out again.

Toning is not weight loss. Sorry, but it ain't. What I needed was weight loss.

I'll keep it up until I taper and what I do next will depend on the taper.

Dr. Atkins used to recommend a fat fast for seriously resistant patients. I am willing to try it, but not sure how that interacts with the adrenal stuff.

This is when I really wish I could tolerate Metformin or that there was a good pharmaceutical alternative to it that could impact the insulin resistance in my favor. I looked into this last year and while there was a doc willing to prescribe things like Byetta, Wellbutrin and Januvia (sp?) to aid weight loss, I was unimpressed with their efficacy and concerned about their side effects.

(Especially coming off an anaphylactic reaction to Cipro which will forever make me think twice before taking new-to-me medication.)

One of the theories the low carb community has been discussing is the idea that being bathed in so much insulin all the time causes permanent metabolic damage. The evidence supporting this layperson theory is diabetics who develop lipohypertrophy.

Insulin makes fat and if you spend all day, every day jabbing straight insulin into specific sites on your body this is what happens ...

Yeah, think about that the next time you eat a carton of ice cream in one sitting after eating a super-sized fast food meal. Diabetes can be treated, but you pay a price. Gonna be hard to find a pair of pants to hide those lumps.

So in essence, by (formerly) eating low fat, high carb food just like mainstream science exhorts us to do, I have been 'injecting' my entire body with boatloads of insulin for years.

Regaining the weight via carb inhalation while pregnant didn't help. (FYI the doctors told me low carbing could hurt the baby and advised me to eat carbs. I was too afraid of doing anything wrong after such a hard won pregnancy to risk screwing it up so I did exactly as I was told.)

On the upside, I got fat all over, no lumps for me,unless I become insulin dependent. But the question is, how does this impact weight loss? Is tissue forever metabolically altered past a certain point?

I don't know, but I can see how the damage could be permanent.

Tuesday, March 1, 2011

All the Boringness That's Fit to Blog

Things are steady state around here. The adrenals tried to do me in over the weekend, but the HPA axis was strong enough to power through (plus, there was ice cream). I had one moment where it felt like I was going to pass out, but then it faded away and all was fine.

That would not have happened a few months ago.

The only thing I'm wondering about is why is my skin 'tanning' again? What is up with that?

I have no idea what is going on with the blood pressure. I take the BP pill and don't worry about it. I don't think it's well controlled given that there's this one vessel in my sinuses (I think) that pounds so forcefully when I stand up or bend over that it squeaks. Doesn't happen all the time, but I find it unpleasant.

Who wants a head that could double as a squeak toy?

My dog that's who.

Not my goal in life, you know?

I'm still working out. Energy level is not tanking so badly now. I sometimes even think about doing an elliptical workout or going for a walk afterward, but I don't 'cause I'm lazy. We've (the hubby does these metabolic conditioning workouts with me) shaved 6 to 8 minutes off our time too. And I don't feel like I'm going to have a heart attack until around the ten minute mark, which is an improvement.

Although I did have to stop a bit as the asthma was becoming a problem, but we still finished faster than any previous workout so pffft asthma shmassma.

These workouts are not for the faint of heart.

I got a book on the whole concept called Cardio Strength Training written by some hot shot sport coach that maybe serious sports fans have heard of, but I have no idea who the hell he is. The guy talks about puking, about having to lay down at the end of the workouts, about how you're supposed to love-to-hate the workouts. I hope to not take it to that extreme, but I'm all for getting rid of fat and I'm willing to take a certain amount of pain.

Don't know if I've lost any weight as I'm not weighing myself until the carbs I ate due to the adrenal glands have been purged. Hubby has been calling me Pufferfish due to the carb bloat.

My stomach seems smaller and I have squatted my way into Venus dimples (the link says women with Venus Dimples have just 14 to 20% body fat which is in no way true for me!). My back is nowhere near as fat as my front, why can't the weight loss come from the flab fest in my gut first?

So unfair.

But some progress at least.

Food-wise, I'm eating eggs for breakfast and lunch with no snacks. Not in a disordered eating manner, more I'm just not interested in anything else and hardboiled eggs are an easy way to low carb. See also, cheap food in a bad economy.

I pop 'em on the stove, set the timer for 18 minutes and make the toddler's bfast or lunch. By the time her food is ready, my food is ready and I didn't have to stir it or even think about it.

This coincides with a general feeling of kitchen burnout. I've been cooking a lot lately and I'm just so over it at the moment.

That's it. Relatively drama free on the health front. Other stuff is not going so well but this blog is not about that.