Wednesday, May 22, 2013

Weirdness Such as This

I have to say I get very nervous when the super taste buds and the blood hound nose show up. I feel like a uselessly bizarre action hero who can smell and taste things no one else can.  The smell they usually catch sooner or later, but no one tastes food like I do.

Which is probably good since the flavor trends toward rancid with a side of dead rodent. (Or rather I imagine that's what a decomposing rat would taste like.) It's like I taste the life cycle. I get the intended flavor, the freshness I was aiming for when I chose the recipe, but then it keeps going until decay covers my tongue and I wonder if the meal I cooked might actually be poisoning people.

"Does the food taste okay?" I will ask my husband in a hushed whisper.

"It's great. I love this new recipe. Make it next week." Then he shoves in big forkfuls of whatever it is we're eating while I nibble at mine trying to convince myself I don't have to listen to my tastebuds.

(Note that ice cream always tastes fine. Imagine that.)

"Do you smell that?" I ask almost ducking as the cloying scent of flowers hits me. The lilac bushes are a good thirty feet away, but the scent is akin to some deranged ENT cramming the buds up my nose and into my brain.

My husband looks around and shrugs. Oh that crazy wife of his! Why can't she just hear things like all the other regular crazy people? "Smell what?"

Five minutes later, when we are right under the lilac bush he says, "Oh I smell it now."

It's moments like that when I wonder what my cortisol levels are like. Who knows? Not me!

So it's been a month since I posted.

Where the hell have I been?

I was not sick. I did not die. Other than my super sensory powers, I'm doing okay. Not perfect but as close as I can get to it.

My book sales did tank however. They fell faster than a balloon attached to a lead weight and launched off the Empire State Building. It's an arbitrary bureaucratic issue on the part of the booksellers. I could go on about algorithms and search engines and reader/market manipulation, but that would bore you.

So I have been dealing with that to the exclusion of all else. Barring illness that keeps me from trying to salvage what I can and rebuild, I probably won't be posting any time soon.

You know my email. If you need me, you can reach me, but there will probably be a lag of several days before I respond.

I'll be back at some point.

Thursday, April 25, 2013

About that River...

Denial is a powerful thing. It allowed me to ignore:

-loss of appetite to the point of missing multiple meals a day
-increased scent and taste sensitivity
-fatigue
-muscle aches and spasms
-loopiness at a level equivalent to being drunk
-cold sores
-some vague flank pain

These are all clear signs of adrenal whatsit and I ignored them all! Hell, I even went running. What special breed of idiot does that? Me! That's who.

Tapering inhaled steroids, which is what I did last week, can be a problem and it can also be just fine. Since summer is good for my lungs and my most stable time of year, I figured I would try to cut down on the steroids in my system. Basically, I got cocky and convinced myself that abruptly cutting the inhaler dose in half would go well.

Obviously it did not.

So here I am feeling not so hot and impatiently waiting for normal to resume. I'm trying an alternate day taper now to hopefully ease the strain of the adjustment. So far, it's not doing much. Next week, I start progesterone again and I'm crossing fingers that provides some support.

STEROIDS SUCK!


Tuesday, April 23, 2013

I Thought Spring Was for Hibernating

I had planned to write a post excusing myself from this blog, but my body had other ideas. I don't plan to abandon this blog because, let's face it, the asthma is going to come roaring back at some point and I'll suppress again. I'll need someplace to rant and rave about the misery. However, I had thought I would step back a bit and enjoy the lull.

There's a lot going on. I need to focus on my writing and develop other business ideas. We want to do a light remodel of the kitchen (new counter and floor) which means I need to produce the funds with writing. One house guest has left, another has arrived. The school board approved our exchange student. So, you know, I have a life and now that I'm able to get up off the couch, I want to go live it.

However...something is UP. I don't know what or how much of a problem it is going to be, but things ain't right.

First, my cortisol was not low. Or rather, it's only low for alternative medicine. No one else would find it low. I was not too concerned about it until last night. (And really the issue isn't what my baseline cortisol level is, it's the lack of the upper reaches of my stress response....something there's no real ability to test anyway, not until it completely fails.)

Second, I've had some loss of appetite. I've forgotten to eat several meals in a row more than once now. I haven't been able to finish what is on my plate fairly regularly. This is not good. It's an old school sign of adrenal insufficiency. (Don't worry, I'm still fat. F*ck you insulin resistance.)

Third, we went for a family walk, which, when you have young children, can be code for 'outdoor scream-a-thon'. My kiddo tires out easily, freaks about bugs and walks with her generally test the limits of our patience. They also progress at the speed of a crippled snail.

We could probably handle twenty minutes of the balking, but she manages to stretch it out to 45 or 60 minutes. If we didn't want to emphasize exercise as a family value, we would give up. We still might. Love my kid to the moon and back, but I could do without the behavior on walks.

To get my heart rate up on these excursions, I do some interval training. Light jogging. Some galloping, Chasses interspersed with walking. Nothing too major. Right now I'm out of shape because our vacation ended up being a bigger fitness detour than I anticipated. Mostly I've been walking 2 to 3 miles a day and am just now adding in these light cardio intervals (which only cover a mile).

Everything seemed fine. I'm careful not to push myself too hard. I don't want an injury, don't want to trigger the asthma and don't want to use up too much of my precious energy. So I hold back as a general rule and work my way up very slowly. Since I felt okay immediately after the walk, I figured I'd managed all my weird parameters okay.

When I went to bed later that night, I started to feel very ill. Post exercise adrenal ill. Severe nausea, burning stomach pain and lots of GI distress. I managed not to vomit, but was up quite late afraid to move or breathe too deeply lest I lose it.

Today I am loopy as hell, tired and weak, all the energy just wrung out of me.


Ah ha! I just ad an insight. I've been tapering the inhaled steroids. That might be the trigger here. AND I just realized I've been having some unusual muscle pain which would be consistent with steroid withdrawal. Oh wow. Phew. Look how much writing I did before I figured that out. That's how slow the synapses are today.

So I might actually feel better by next week.  Boy this post just did a 360 didn't it?

Monday, April 8, 2013

Alternative Slime

Saw doctor alternative...my cortisol level came back low. I didn't get a copy of the labs (but will ask for one) so I don't know the number, but that was not what I wanted to hear.

However, what alternative medicine considers to be low cortisol and what traditional mainstream medicine deems low are two very different things. You've got to be pretty low for a endocrinologist, not so much for integrative medicine. Based on how I feel, I can't be super low. I can't be.

So today I am allopathic by-the-book medicine all the way. In that paradigm, I'm fine (usually) and I prefer it that way, thank you.

And no, I will not be starting steroids. Day-to-day seems to be pretty stable with progesterone, but I still have issues with illness and apparently big trips. I'll deal.

My other hormones are all wonky still, but the new theory is...ummm still to be named, but a component of it is that menopause is ruled out.  (We'll see about that.)

I left the appointment with a butt load of vitamins...all of which taste terrible. (Tip: Never trust alternative medicine to give you anything that tastes good.) I've got four that come in slime gel packets. Total yuck on both texture and taste. Gag. Like eating frog diarrhea.

If the vitamins don't do anything (which they won't) we move on to some really fringe experimental bio-idential hormone stuff. I'm willing to try it only because it's relatively cheap and fairly safe, but I don't expect it to do much of anything.





Tuesday, April 2, 2013

Shhh! I should be working.

Don't tell anyone.

I'm slacking off.

I really need to go to the bank, but it's the beginning of the month and I don't feel like being neck deep in octogenarians. Seriously, the lines are ridiculous when it comes round to social security check time. I'm always surprised that thieves don't follow some of these folks home and rob them blind. I would think it would be easy pickings. Everyone seems to roll out of the bank (I say roll because they all have walkers) with a serious wad of cash in their pockets.

But I'm not a thief so WTF do I know?

I should be writing, but that's not flowing either. (The bank thief thing above doesn't count.)

I did make a book cover.

Something kind of cool happened the other day. I got a phone call from a stranger. They tracked me down from a fundraiser we participated in for our church wanting my pumpkin cake recipe. The one I make with almond flour and ground flax seeds. Apparently they loved it and so did their friends.

I was, of course, pleased to hear that someone loved the cake so much they hounded people for my phone number. For the last two months. That's some serious pumpkin cake love.

I promised to mail them the recipe, however, I warned them they probably won't get much out of it since they don't already bake with almond flour.

What a nice compliment though. Made my day. I worked very hard on perfecting that recipe, it's good to see that effort paying off.


I'm feeling somewhat more okay. I finally have adjusted to the home turf time zone. That took forever.  And I'm back on progesterone so things should continue to improve, right?

Saturday, March 30, 2013

Alternative Medicine for Adrenal Insufficiency/HPA Axis Suppression

I got this comment on an old post the other day:

"My husband is a physician suffering from all sorts of complications after a year on Prednisone including two taper attempts--the first nearly killed him with an adrenal crisis. You definitely need an endocrinologist working with you and insist on being monitored closely with blood work done frequently. Does anyone have any thoughts or suggestions on home to go the alternative route in conjunction with conventional medicine? "

Having done a lot of alternative or integrative medicine stuff to try and support my recovery, I feel I can say, the short answer to your question is, no, there isn't really an alternative route for steroid induced adrenal insufficiency.

The best 'natural' treatments for HPA Axis Suppressoin are things like taking lots of B vitamins as well as C. You should also monitor your blood pressure and salt food for low blood pressure. It's also important to keep sugar on hand for low blood sugar.

Don't ever leave home without some form of salt and sugar. If you can keep blood sugar and blood pressure stable you can avoid a lot of bad adrenal ju-ju.(Ju-ju being not digging yourself into a pit where conditions are ripe for an adrenal crisis.)

Plus, you should sleep as much as possible. And don't try to exercise until you can handle regular activities of daily living (i.e. work, cleaning house, running errands all the usual stuff you couldn't do while in the depths of adrenal insufficiency). You might not be able to tolerate exercise for up to a year or longer, depending on how resilient your system is (or isn't as the case may be).

I think some people are just really sensitive to adrenal suppression and don't come back like the text books say they should. And it sucks. All you can do is ride it out.

If you go the alternative route, be careful. Likely the first thing they'll want to do is hook you up with a Meyer's Cocktail via IV. Every alternative doctor has a different recipe and some of them add steroids to the mix, which might not be such a good idea for those of us trying to recover adrenal function.

Alternative medicine likes to 'rest' the adrenals by giving patients steroids and using a diagnosis of Adrenal Fatigue. Sometimes the doses are as high as 40mg which will not stimulate your HPA axis to function. In fact, it will further suppress it! Some alternative patients have found my blog because the steroids they were given left them suppressed. They weren't necessarily insufficient to begin with, but all the 'resting' of their adrenal system ensured they ended up that way.

The most effective treatment alternative medicine has to offer adrenal suppression patients is bio-identical hormone replacement...if blood work shows you need it. In my case, I had low progesterone and replacing that has made the biggest difference out of anything I've tried (ostensibly because it is one of two precursors to cortisol production). However, not everyone will have low levels of hormones.


Regarding the difficulties with tapering...Any time tapering steroids is a disaster that means you're not going low or slow enough.   Too few physicians understand this 'law of tapering steroids'. It's not an area of medicine they know. They still think adrenal stuff is rare or that steroid induced adrenal stuff follows all the 'rules' of their medical textbooks.

Based on my experience and that of other patients, the ideal taper is to drop the dose by only 1 or 1/2 mg every taper. You don't taper again until you feel okay at the new dose.

Also, try to switch to hydrocortisone with its shorter half-life. Take all your doses before noon and then nothing after (you might have to work up to this). Once you adjust to it, the shorter half-life will support recovery whereas prednisone's 24 hours+ half life impedes it. (Note: Don't try to taper until you've fully adjusted to the switch from prednisone to hydrocortisone. Be advised, switching steroids can be rough...some level of misery is unavoidable, but shouldn't last more than ten days.I ended up alternating between prednisone and hydrocortisone for a while until my body could handle the change in half-life.)

If you are struggling with a steroid taper, please check out the forums links that show up when you go to leave a comment on my blog posts. Those patients know what they are talking about and are an invaluable resource.

Tuesday, March 26, 2013

Surprise!

It's been an interesting few days. I did not travel well either going or coming. Adrenal whatsit does indeed seem to be active.

Right after I posted my last post I got the "stomach flu."  You know, the stomach flu no one else in the house gets but me. The intense burning stomach pain was a match for what I felt during the supposed adrenal crisis in 2011.

Of course, it could be anything. Food poisoning, stomach flu for one etc... But it felt very adrenal.

How strange. I am flabbergasted that it would happen like this.

I did not stress dose because I didn't actually vomit, just felt like it all the damn time. I just tried to ride it out and crossed fingers, toes and curls that it would be mild. So far, so good. It took about 5 days for the burning pain and nausea to subside. My energy is still kind of yuck but I did go for a walk today.

I know Addison's patients say they have issues with travel, but I don't have Addison's and thought I was pretty much over the hump. Huh. Guess not.

Well, at least I didn't have to fall back on steroids.

I'm very tired right now. The weather is not helping. The time zone change isn't helping. I so want to Rip Van Winkle.

And the real stomach flu is coming for us. We arrived home to a shut down preschool, cancelled dance classes and dehydrated kids in the hospital. Everyone's puking around here. I've stocked up on Sprite and Jello and am engaging in lots of magical thinking which goes something like...

Maybe we won't catch it because we've been out of town. La-la-la-la I can't hear you puking.

Then I take my pointer fingers and make a cross like I'm averting the Evil Eye.

On the work front...some exciting stuff. Although it's been difficult to find time to write. We're just so busy, going here, there and everywhere and bringing people home with us. (Also, ZOMG the preschool homework. Pages of it! WTF?) I'm kind of in hostess mode for the next few weeks as we have a house guest who needs hosting as opposed to the more typical 'person who lives with us' guest. So my time is not my own.

However, the last story sold pretty well. The sequel is in final edits (if I can find time to work on it) and I'm branching out into some cross marketing by sponsoring some stuff. The sponsor thing is what I'm most excited about. I have no idea if it will be effective or not, but it should be hella fun...I get free tickets.

 PS: I believe comments have been enabled once again.