Cranberry Revenge

It seems that eating copious amounts of cranberries is not such a good idea if you have GERD.

Ow. Ow. Ow. OWWWWW!

That hurt.

My blood pressure is also being very bizarre.

I am going to try some BP meds to see if that helps bring it down as it is getting scary high.

I have lost weight. Then lost more weight. I was exercising until all the fatigue ate up my life. I cut out salt. Quit caffeine and all I have to show for it? Peak and valley blood pressure.

I did all the right things and I have this zig zagging blood pressure that, right now, is making me very nervous. Usually it spikes and then tanks. Usually it doesn't spike at all if I'm on prednisone so this is very much going against trend.

This Is Not a Food Blog But....

I am sooooooo zonked right now on 5mg. I went to the grocery store yesterday and wanted to lay down...in the aisle. This will pass. For some reason dropping to 5mg always hurts. Hopefully yesterday was the last yucky day.

I don't really care how tired I am because I am just happy, happy joy, joy to have been up for anything other than my previous vegetative state. So...here are the fruits of my labor from the holiday weekend.

First up, roasted cranberries with orange zest and a little Splenda. Great with turkey.








But also good in a winter fruit salad. Lots of fruits are low carb such as any kind of berry or grapefruit and some have a few more carbs, but not too many like apples and pears. Then there are fruits like oranges which you want to avoid or use sparingly. All these fruits made their way into the salad, which was delish...in small portions.












Homemade green bean casserole which has been 'low carbified'. Also added chicken to make it a one-stop meal.











Scrambled eggs and pepper poppers stuffed with cream cheese for breakfast. A great way to avoid over eating on a holiday is to have a hale and hearty breakfast.

Yes you can eat that many calories and that much fat and still lose weight. That is what is great about low carb. Also, if you are recoiling in horror at the fat, I just want to point out there is a whole other world of science out there that thinks fat is not the devil. Low fat is mainstream nutritional advice, but not the only school of thought.


Pumpkin cranberry muffins made with almond flour and ground flax. Low carb and convenient for breakfast on the run during the week.









Lemon crackle top cookies. Full 'o sugar. Taste like summer; bright and cheerful with a crisp sugar crust. I take them to the family get togethers and leave the uneaten ones behind.







Molasses crackle top cookies. Another sugar bomb. These are what you eat if you want Christmas to actually run in your veins. They smell and taste like Happy Holidays.

These were not as photogenic as previous batches, but no one cared. People filched these by the handful and and hoarded them for later. Weird, yes, but people in my family really really really like these cookies. Some so much that all I have to do for their Christmas gift is box up a dozen.

Not pictured:

Pumpkin pie
Apple pie
Italian sausage, onion, mushroom and green pepper spaghetti sauce over low carb noodles

You could say I like to cook :)










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Back to Normal

Normalcy is the theme right now.

Done with the excesses of the holiday.

Back to low carbing.

Done with the excesses of prednisone.

Down to 5mg.

Waiting for 5mg to feel good so I can get back to exercise.

Done with the shortcomings of aberrant adrenals.

For the moment anyway.

Changing topics...

Got a call from a mom friend whose little one has asthma and is not getting relief with the current treatment plan.

Clarification, I've been getting phone calls from this mom friend for a while now.

Because it's not been going well for her little one for longer than it should.

So now they are on the merry chase for the right doctor, the right medication, the right tests.

Call me crazy, but I think medical 'Chinese fire drills' are really the biggest problem in health care. Both in terms of costs and quality of care. When a child with asthma has to see more than 4 doctors to get proper care which, in turn, also forces them to use Urgent Care or the ER as the stop gap, it's costing everyone a lot of money.

No one wins.

But that's just normal for our medical system.

Vegging

I love the holidays and am thrilled that I feel good right now so I can enjoy the kickoff for Christmas.

The tree should be going up today.

We made another pumpkin pie because the hubby loves it. The toddler helped me make it saying, "Mommy, I'm making Christmas," as she stirred.

Everyone's still in their pajamas, the house smells like cinnamon, the Christmas music is jamming and the sun is shining.

It's gonna be a great day.

But not perfect.

I've had some resurgence of the back pain as I've tapered, but I'm trying not to give it too much attention. I did find some patient accounts of having pain that persisted past treatment so the idea that prednisone must fix everything 100% perfect or else it is not adrenal is not borne out.

I have had back pain with tapering before. Based on past experience, so long as the BP is okay, it should resolve as my body adjusts to the new dose.

However, just because I want to be sure to I'm okay today, I tapered to 6mg instead of 5mg, which I'll do tomorrow. The last thing I want is to be zonked from tapering.

And now I have to go. The family is demanding lunch.

Dead Bodies Motivate Kids to Do Their Physical Therapy Exercises

First, a few housekeeping notes, this is NOT a Thanksgiving post.

You're welcome.

I am sticking with 7mg today and will go to 5mg on Friday.

The BIG news? I went to the grocery store for the first time in a month on one of the busiest food shopping days of the year and I was FINE. Woot!

The hubby is doing a happy dance too. He hated going to the store, poor guy. He couldn't win. I would thank him and then tell him all the wrong things he did/bought all in the same breath. He is terrible at picking out produce--always always always finds rotting produce and buys it. How, I don't know. It's his gift. I'm sure Oscar the Grouch is jealous.

Also, I am very lucky the hubby thinks bitchy on me is very funny.

I don't get it either, but it certainly helps make our marriage work.

Anyway, today we are driving down to relatives while watching Bob the Builder on the DVD player.

I do not like Bob the Builder by the way.

While the Baaaaahb the Builder theme song becomes my personal earworm from hell, for your entertainment, here is this little vignette of the toddler's ongoing physical therapy...

The other night I was watching some random sitcom and the toddler was in the other room stacking dress-up clothes on top of our very patient black lab, topping it off with a pirate hat and then sitting on the dog.

That dog deserves something better than heaven when she passes. The toddler is no lightweight.

So the sitcom ended and CSI started. I couldn't find the remote to turn it off/ change the channel fast enough.

Of course the toddler wanders in just in time to see the corpse close-up.

The really bloody corpse close-up.

HUGE parenting FAIL anyone?

"What's that mommy?"

"CLOSE YOUR EYES! GO TO YOUR PLAYROOM!" I screeched, frantically digging between the couch cushions for the effing remote.

"What happened to that man, mommy?" she asked, eyes obediently closed and walking into a wall. (Note: Toddlers are very literal. They will do exactly as you ask, except for when they don't want to do anything you ask.)

Locating the remote, I shut off the TV and, thinking fast, said, "He didn't do his physical therapy exercises and he got hurt."

Would you believe, instead of ignoring me or arguing about it, she has done all her PT exercises since?

And I think I explained it well enough, in terms she understood, that she won't be scarred for life from violence on the TeeVee.

WIN for Mommy.

Now, where's the remote again?

If It Walks Like a Duck...

I still think I have Secondary Adrenal Insufficiency. I've had it before*. The symptoms fit. The sequence of events and symptoms fit.

It makes the most sense.

SAI is supposed to be common too, making it more likely than other things.

So all these forays into other ideas are nothing more than idle due diligence. Some other diagnoses kind of fit, but they don't have the sequence of events behind them that SAI has.

If I hadn't been in the hospital and on so much prednisone and not had SAI before, I would be singing a different tune right now believe you me.

Even if there is some other medical issue, SAI is still a problem given what's been going on. They still need to check my levels and develop a decent taper and monitor the withdrawal. SAI is not going to go away no matter what happens. There still has to be a wean.

Also, the chest x-ray came back clear. Can't even see the tumor. It is an itty bitty thing.

I bet it will either be gone or won't have grown. I hope it was just a byproduct of how sick I was in March if that is even physiologically possible.

I know one person who knows one person who had a similar tumor situation and their itty bitty tumor was gone on the follow-up CT. It doesn't mean anything but I prefer to think about that person rather than the hubby's 80something relative getting 1/2 a lung cut out this year due to a similar, albeit much larger, lung tumor. (They are recovering well, by the way, and still living at home.)

So I'm still in the SAI camp. Do I believe there is a broader underlying issue at work? Yes, but I don't believe science can do anything about it, much like PCOS was unheard of 15 years ago when I started being symptomatic (and I don't think I actually have true PCOS anyway, but that's a whole new post). If I ever find a doc who wants to do the work to really figure everything out, then we'll do it, but until then I will settle for...

1.Being able to parent and be fully present with my child and family.
2.Being able to exercise without having to quit half way through or give it up completely.
3.Cooking and cleaning my house.
4.Driving without hitting anyone or anything.
5.Shopping/Leaving the house whenever I want without worrying about whether or not I'll tank.
6.Returning to full time work when the toddler is a bit older.
7.Returning to a full load of part time work until the time for #6 comes.

1-7 can be achieved with a diagnosis of and treatment for SAI. So can we stop f*cking around and just git 'r done already?

Can I please just have my ability to live a life back? Sooner as opposed to later?

Thank you.

*The current situation is so surreal to me that I find myself questioning if I really ever had SAI and then doh! I remember I had actual blood work documenting it and I even have a copy of the lab results. I am not crazy, the doctors are!

P.S. 7 mg today!

P.P.S. If I seem all over the place, saying one thing and then another and zig zagging, it's because I am. I am all over the place right now with this. I'm not consistent. Sorry. The brain no workee and I'm really stressed.

Not to mention baking up a storm in preparation for Tday tomorrow.

Reporting In

Went down to 10mg. Which means I took a nap. After spending most of the day on the couch. The toddler snuggled with me most of the day.

I feel good. Awake. Conscious. Not lost in the murky fog of mental malfunction. I don't even want to tell you how bad my driving was before I started increasing the prednisone. More near miss accidents than I have had in my entire driving career compressed into a period of just a few days kind of bad.

The back stuff is weird still though, but now more in the kidneys. Like things are swollen or inflamed still. I wish it would go away. Or get bad enough to communicate properly with doctors via lab results. Either way, but could we please stop camping in limbo?

Contemplating the taper to come as the birth control pills run out tonight and that always seems to make me feel bad adrenally. An adrenal patient told me they read in a textbook that menstrual cycles = low cortisol which would really explain a lot. I told the endo back in August that things as simple as my period were stressing my body out.

I failed to impress the endo with that tidbit.

However, more than once, to the point of being a pattern, stress dosing needs have coincided with my cycle. As have the asthma and viral infections. It all likes to hit at the same time.

Conveniently the toddler seems to have boogies. So the monthly gauntlet should reconvene any minute now. Just when I need to drop the steroid dose.

I also got a chest x-ray today, ordered by the pcp because...you know, I'm not actually sure why. I think the idea was to get a better image of my lungs than when I was so ill as I did have some airway collapse in March that made for a less than stellar view of my innards.

I wonder if they will be able to see the tumor or not? It was originally discovered via contrast CT.

I have been reading about Hypercalcemia, Hyperparathryoidism, Pheochromocytoma, Sarcoidosis and Vitamin D Hypersensitivity.

Just because.

Anything is possible, but not always likely.

I stopped taking Vitamin D just in case. You never know. Thanks to comments from Tracy that made me go back over all the vitamins with a critical eye.

Although I am not taking near enough D to have problems with it unless something else has gone wrong in my body first, but if there is a base I can cover, I will do so. I thought it was kind of interesting how Vitamin D Hypersensitivity intersected with Sarcoidosis, Hypercalcemia, and Hyperparathyrodism. Didn't think there would be a common factor.

I also stopped calcium supplements for the time being.

17 days until the next doc appointment. I need to work on lowering my expectations dramatically between now and then. For some reason I am hopeful and I know better than to think there will be any answers or help.

And Another Thing...Prednisone is Not a Happy Pill

My pulmonologist seems oddly attached to this idea that prednisone creates a false sense of well being, making you feel better than you actually are. That it's a mask covering all the yuck.

I beg to differ.

Yes, I've been hyper, manic even, on high doses of prednisone but I have not ever felt great. Weird. Out of my mind. A little crazy. Cranky. Edgy. Insomnia. Yes I do get that.

But super hero high to where I can power through anything? Nope. What I do get is relief. I get my regular energy back and I go live my life.

So to be told today that I only improved on prednisone because of its false sense of well being is frustrating. Their belief in this idea of prednisone as super charger is so strong I do not feel the pulmo really heard me. They were too busy listening to themselves.

You know that intense mid back pain radiating around the side and through my stomach along with shortness of breath and fatigue and headache that improves with prednisone?

Totally not adrenal. Couldn't possibly be.

I just had regular old back pain and got better because Prednisone will do that for ya. It's a super drug, you know, it just amps you up. That's all. I don't have anything wrong with me at all.

Riiiiiiight.

I am also a super model on the side and Taylor Swift writes break-up songs about me.

I would love to know on what planet someone with a documented history of SAI who takes high dose steroids for a month and then has problems upon weaning would be anything other than SAI?

Because that? Is the planet I want to live on.

Yeah, there are some differential diagnoses that could be worked through. I could maybe see sarcoidosis (sp?) on the table (a friend of mine had a brush with it which is how I know anything about it). Or something else. There's the lung tumor after all, but it is small, the odds are it won't have grown or it will have actually disappeared (I'm hoping for disappeared myself).

But you never know. I'm all for a thorough investigation.

The problem is I do not have a doctor who wants to do one. Or if they are doing one, they haven't told me about it.

The endo appointment is 12/10 and the CT scan will be shortly after. I really really hope I get some decent forward movement here. I'm due for a good turn.

As for prednisone, I am on 15mg and feeling better. No pain. Still kind of wiped out though and headache-y. My thought is I may have under-dosed,but, at the same time, I'm glad I didn't take more than 20mg. I don't want to make this mess any worse than it has to be.

The doctors are doing a fine job of f*cking it up all by themselves.

OMG WTF BBQ?

"You don't have adrenal suppression."

"These symptoms are not adrenal."

"I am not mad at you. You should not be mad at me." (I didn't say a damn thing to trigger this statement at all. I have no idea where it came from or what prompted it.)

I don't even know where to start on today's appt with the pulmo.

1. BP was 150/100. I tried to be cool, but I was very stressed. And angry, don't forget angry.

2.The whole idea that the symptoms aren't adrenal is just odd. Yes, there are differential diagnoses that could be explored but based on my previous SAI history and the current endo's opinion that I have SAI and the fact that no one is really doing anything about ruling other things in or out, there's no opportunity to entertain anything else.

There's no data either way. Until someone takes responsibility to break the stalemate, I'm sh*t outta luck.

I asked what I should do to rule out/in other things.

"Go see the other endo the PCP referred you to."

"What do I do after that? Come back to you?"

"Well..............if you need to." As in not really wanting me to come back.

WTF does that mean? Is there a plan to figure this out or not? If you don't want to buy the adrenal diagnosis, then DO something about it. Or just tell me you think I'm nuts and need Xanax, whatever, but don't leave me hanging. That is not cool.

3. Why do I have to push to get doctors to do what they said they were going to do? Why do they forget what they were going to do in between appointments? Can they not write it down?

This is a consistent problem across the board. Look, we agreed the CT scan for the lung tumor was going to be at the end of the year partly for financial reasons on my part, partly because every single other medical person I know and medical association I know says the follow-up CT scan should be at 6 months not 12.

8 months seems like a happy compromise, work with me doc. Because my family? Is not happy that you're making me wait 8 months and you do not want to go there. I don't want to go there. Order the f*cking test like you said you would and let's all hope the damn thing is gone.

Otherwise? My entire family is going to bring their very loud dysfunction to your office. I won't like that and I know you won't either.

4.Apparently the pulmo did order the cortisol test BUT I never knew about it. I don't know what happened. Maybe I missed something or if they forgot to tell me, but the last conversation I had with the pulmo before getting the current endo involved was "wait 2 weeks and then we'll test the cortisol." There was no way I could wait two weeks.

I suspect they put the order in for the test and told me "wait 2 weeks", but I didn't know I could take the test at any time.

Or I would've.

As I have alluded to time and time again. The lack of good medical care and, apparently, basic communication is going to screw me up. I have not had proper testing. I have an educated opinion with one endo, but no testing. Without testing all I am going to hear from the pulmo and likely other doctors is, "It's not adrenal."

Do you know what they do to people who might have adrenal problems and are on steroids but didn't have proper testing? They wean them cold turkey and, if that doesn't kill them, they run the blood work.

They don't care if you have a small child to care for. They don't care how much pain that causes. They don't care if it hurts or if you have to work. They don't care if you are competent to drive or that it is their dysfunction that made this mess, you get to suffer all the pain of the clean up.

F*ckers.

Now What?

Normally when I take 20mg and I'm not, like, sick with some kind of bug, I feel 'high' pretty quickly. Next thing you know, I'm writing 3,000 word blog posts. Four times a day. That is how lots of steroids hits me. Everyone can tell I'm getting more cortisol than I need.

At 20mg yesterday, I just wanted to go to bed. I still am not sure if I took enough but was/am afraid to take more.

I don't know what I'm doing.

I began to question when is this an emergency? When I have to take 40 50 mg? How much steroid do I take by myself?

Please don't let me end up in the ER. Please not that.

This was bad. I am still not sure if I've completely turned around. Still not sure I should've stopped at 20mg.

But so far, just sitting on my ass after about 8 hours of sleep, the adrenal pain is about 95% gone instead of just 60% yesterday. I don't feel so dog tired, but we'll see what happens this afternoon.

We missed the dinner dance. Went to a movie instead. I spent most of the movie wondering is this a good thing or a bad thing for the adrenals? Am I making it worse?

I didn't feel up to a movie but it was Date Night. Come hell or high water.

The toddler was at the grandparents for the night. That's not gonna happen again any time soon. You know how it is, wasting a babysitter is a sin when you are a parent. Even if you do feel like death warmed over. Under parenting laws, you actually have to die to get out of Date Night.

I am glad I went. The movie was good. It made the hubby happy and he lets me snuggle and sleep on his shoulder during movies. Something I realized I do anytime my adrenals are for sh*t. Deja vu of the last time I had Secondary Adrenal Insufficiency.

So the next big question is when do I wean down from 20mg? Tomorrow is a stressful doc appt that, if I'd been smart, I would've canceled and rescheduled when I had the chance.

The last thing I need is more stress and I don't know what is more stressful than sitting across from the doctor who hurt you when you needed help the most.

So I'm thinking at staying at 20mg through maybe Tues. Weaning down to 15mg on Wed, Thurs. Down to 10mg on Friday and down to 7mg next Sunday and 5 on Monday.

From there I am no longer trying to get off steroids. I tried, it's dangerous either because I'm not tapering correctly (because no doctor will tell me how to do it) or because my adrenal glands are not ever going to recover. But since 5mg can be a little too much for me and 4mg was the best dose (not too much, not too little) this last taper cycle I will try to get back there and camp until I find an endo who wants to do something about what's happening over here.

Crash Course

5mg was not enough. Not even close.

This was the first time none of my 'tricks' worked. Salt couldn't keep my blood pressure up. Sugar didn't help. More sleep or more steroids didn't help. The adrenal pain did not abate.

I tried to ignore it but last night it was painfully clear that I needed more steroids.

I took 2mg to start.

Nothing.

Then another 5mg for a total of 12mg that day.

The adrenal pain improved by about 60% with that. Which was a nice break. Finally some relief.

Although I was up in the middle of the night hunting down potassium for muscle cramps and thinking, 'Hmmm I wonder if this means my potassium levels are off.'

The fatigue seems to be better this morning but all I've done is get up and sit. The dinner dance is tonight, I doubt we will make it. Poor hubby will be doing the biweekly grocery store run too unless I dramatically improve soon.

The adrenals are a dull ache and it worries me that I can't banish it. How much prednisone do I need?

To recap...

Crappy taper for asthma in March.

Suppressed my Hypothalamas-Pituitary-Adrenal-Axis.

Took me about 2 months to wean off steroids. From March through early June

But I did wean and I was off steroids.

Was fine for June and July, some 5 day burst dosing each month for asthma and adrenal symptoms with illness.

I was fine. Doing great. Working out hard. Losing weight.

August marked a long slow slide to hell. Had to stop working out, no energy and from here exercixe eventually became a problem in that it was suddenly too 'stressful' for my 'princess and the pea' body.

Saw endo. Got super stressed about it and had a mini crash after the appt. Did a 5 day burst as a result in early September.

Seemed to be fine until....

I 'crashed' about 5 days after that due to a 30 min elliptical work out and 2 hours of raspberry picking. BP 90/60.

Been on steroids ever since, mostly 5mg or lower. One brief uptick in dose for asthma flare, but right back down to 5mg.

Weaned down to 2mg.

That didn't go well.

Bumped up to 3mg.

That wasn't going great but I was trying to power through.

Encountered some strenuous emotional stress.

And tanked.

Sparkler

I didn't make it far after last night's post.

Went to tuck the toddler in for the night and found myself panting my way through Fancy Nancy (the latest toddler obsession. Also, great girlie girl books if you have one of those, which I do. They are packed with vocabulary so also educational.)

It was not asthma. Nothing like it. Just weird shortness of breath.

And as I said the last good night, a flare of electric heat spasmed over my kidneys. The mental image it imparted was one of a 4th of July sparkler. Fizzing, spitting heat, whipping across my back.

I really do believe it's possible to literally burn out your adrenal glands. Mine seem to spontaneously combust on a regular schedule. It continues to be one of the oddest sensations my body has ever produced.

Between the breathlessness and intensified adrenal discomfort, I didn't want to wait to see what was next.

So I took 2 mg. Perked up about an hour later and then started flagging again. Decided to ignore it and just take 5mg this morning. Which I did.

Based on past experience, this should be enough to turn it all around. But the adrenal pain is continuing and I'm not sure what to make of that.

I would be frustrated and angry, but I'm too wiped to get all that worked up about it. Here's hoping I'm up for a good rant sooner as opposed to later.

Can't Face It

I should've stress dosed after Tuesday.

It was too much after all.

I'm doing the long slooow slide down, very similar to August.

Soon I'll reach a tipping point that will force me to up the dose.

I suspect Monday will be a problem.

Doc appt.

With the pulmonologist.

If you've read this blog for a while, you know why this will stress me out.

If not Monday, the dinner dance on Saturday could do it.

I suppose I could just throw in the towel and increase the dose now, but I keep hoping it's in my head. That I'm making it up. That I should sleep more. That it's not so bad. That people with 'real' adrenal problems wouldn't be able to wait and see, so my adrenals aren't really all that bad.That if I ignore it, it will go away.

We'll see how all that denial works out for me.

Adrenal Therapy Gone Bad

Last night my tutoring session devolved into a therapy session.

I am not a therapist.

I could never be one.

It's too much.

My student is emotionally troubled. A lot of the kids I see who have academic deficits have emotional ones as well.

Mom is at the end of her rope.

"What should I do?"

I am in the middle.

"I haven't found the answer."

The student, of course, confides to me they have done zero school work all year.

"Please don't tell my mom."

Hahahaha.

What fun.

I didn't tell mom, but I made sure to suggest she sit with her kid as they go through all the online schooling stuff so she can see the gaps in the system and in her kid's work ethic.

I warned my student this would all catch up with them.

And last night it did.

Leaving me to try and placate mom while also maintaining what little credibility I have with my student.

Credibility is everything in tutoring. Kids don't listen if they don't like who you are.

I did very delicate emotional negotiations for an hour last night. For a scrapped tutoring session for which I will not be paid.

My job is to teach basic math and reading, but I spend a lot of time doing social coaching and navigating troubled emotions. If I don't deal with the psycho-social stuff, the student will never master long division. That's just how it is.

When I came home, a large amount of chocolate was consumed, my head was throbbing and I had to go lie down. I was spent. Aching for my student who is too young to know that what they do now matters. Terrified my kid is going to hate me too when they are 15. I see waaaaay too many teenagers with serious anger against their parents.

I don't know if it was the adrenals compounding everything or what, but God was that stressful.

Today, the aftermath hangs over me.

Enjoy!

Truth

I am holding steady at 3mg the same way a rock climber hangs by one hand after their ropes have split and the edge of the cliff looms large.

We'll see if I can pull this one off or not.

And for future reference, when your toddler tells you they are eating your soup, don't get too excited.

They are not eating your soup.

They are feeding it to the dog.

Along with a stick of butter.

So doing the happy dance in the other room because she's eating soup packed with vegetables is kind of irresponsible parenting.

Three year olds are a danger to themselves and others. They know just enough to get the lid off the probiotics supplement container, but not enough to realize eating them all may result in unpleasantly sh*tting their brains out later.

Your husband will not know what to do and when he calls you at work to ask, you will tell him it's probably fine, but call Poison Control just to be sure. And he will ignore you because why no one will ever know, however, your banshee shrieking upon uncovering this oversight will certainly ensure he doesn't do that again. Or so you hope.

True story.

Parenting: The only job you'll ever love with all your heart and never be good enough for. The performance reviews are bruuuutal.

True story.

Okay. Moving on. Let's answer some questions from yesterday's post.

Ezekiel asked: "If, hypothetically, your cortisol production doesn't wake up again is there an alternative to pred?"

Yes, but I don't know what the doctors would actually end up prescribing. But yes there are other steroid meds, some are considered better than prednisone. More detail on this when I answer the next few questions.

Anonymous wrote: "I think you're trying to taper too fast. I know most docs say to drop every two weeks, but for some of us it appears we are much, much more sensitive to the drops and the side effects of tapering make it soooooo hard to get through the days. I really think you need to stay at each dose longer and also go down by smaller amounts than 1 mg. Also, I've read that if you use your rescue inhaler more than twice a week, your asthma is not well controlled. "

You know, all the pulmonologists and endos I've seen all subscribe to the 5 day taper paradigm. I have heard of longer tapers, which is what inspired me to stick at 3mg for two weeks, but no actual medical professional has ever advised this.

As for the asthma, eh. It's annoying and unpleasant, but not impressive. I've seen worse. I'm not too worried about it. Once I get my adrenal glands going again, I will be willing to add in more asthma meds like Pulmicort, but I really don't want to muddy the waters with more steroids. They say the inhaled steroids don't have the side effects of the oral ones and true, it's not as bad, but I still react to them.

Yes, I am a special snow flake.

You may all applause. Delicately though, I am sensitive.

Edited to clarify: The asthma is the same no matter what I do. The amount of breakthrough symptoms and use of rescue inhaler has been steady so what's the point of more meds? I've done it both ways, there's no difference.

Tracy wrote: "Mayo's endos in Minnesota do adrenals just fine in person - we've seen them for secondary adrenal suppression among other things. In fact, Mayo has one of (if not the) top experts in the world in adrenal tumors.Why aren't they using hydrocortisone instead of prednisone? "

Either I am mis-remembering the info on Mayo or was actually on some other medical system website or didn't see the info you found. Or you got lucky (pass some of that luck over would ya?). The fatigue does kind of eat my memory similar to new parent sleep deprivation.

From what I have read, the steroid used for Secondary Adrenal Suppression varies. It can be either HC or prednisone. Several pieces of medical literature I've read prefer prednisone over HC for SAI but no one ever says why, which is kind of odd since HC is supposedly superior.

Badturns wrote:I'm certainly not pushing the Mayo Clinic because I have no experience there, but I went to their endocrine site and looked at the doctor's profiles http://www.mayoclinic.org/endocrinology-rst/doctors.html There are some with adrenal function/dysfunction listed under "interests" and in their list of publications. E.g., this guy: http://www.mayoclinic.org/bio/10024956.html

Yeah, my memory of what I saw or didn't see where may be flawed or I may have missed something.

However, I will say I'm wary of 'pituitary centers' which is where some of the endos who do adrenals end up. Cushings patients often report cold abuse and lack of care when they seek help from those specialty centers--these are people who actually do have tumors on the pituitary and the pituitary centers are refusing to test! They get their diagnosis from a 'not pituitary center.' It's that f*cked up. Not saying it would happen to me, but, given my record thus far, I am really good at finding doctors who could give a sh*t.

Honestly, I feel awful for endocrine patients. The stories I read online are heartbreaking. People are ignored, belittled and mistreated...by the uber specialists, the doctors who are supposed to be the endgame of medical perfection. It's horrific. Believe it or not, I am nowhere near as bad off as some people. There are people out there who have proven tumors on their pituitary and the doctors still don't care. Isn't that crazy? Shame on those doctors.

Run2WinthePrize posted a comment on the Methacholine Challenge test and I just want to respond here too so she is sure to see my response.

1. MCT negatives have about a 10% error rate from what I remember so with all your symptoms I would definitely go to that other lab for another MCT to rule out operator error or equipment failure. A negative MCT is not 100% accurate and someone has to be that 10%, you know?

2.I hope you find an answer soon especially since you are so symptomatic.

And that's it. Did I miss anything?

Uh Oh

3mg isn't feeling so hot.

I'm going to try and stick it out as long as I can, although I can see how that may not be wise.

But I am determined to get off prednisone.

If I can.

I did exercise last night. It was fine. I would like to do it again tonight.

Today though is the fatigue and the nausea and all the other crap. Not sure if it was the exercise or all the errands I did this morning or both. It can't be withdrawal in the sense that I bumped up the dose, and, by definition, withdrawal is when you cut the dose. So my guess is I'm just not making enough cortisol for whatever reason.

All I know is suddenly I can't eat--the toddler is actually finishing up my soup as I type--and my energy is in the toilet.

Sigh. Will this ever end? Ever?

Weekend Wrap Up

Saturday was just a fog of not quite right, but not really wrong-ness. Sunday, today, is the first day I'm feeling like I'm getting back to normal.

On 3mg unfortunately.

Honestly, I'm having a hard time growing a pair to attempt 2mg again. I think I might just camp here at 3mg for a bit.

Again.

The asthma is mostly okay. I guess I was sick after all? The neighbor had the same thing, 2 days of sore throat followed by gunky asthmatic lungs. The hubby is now gunky too but without the asthma. So it must have been some kind of mild virus.

Anyway, not a lot of pics from this weekend.

I made protein smoothies for the first time.

They tasted like effluvia from dead fish after they exited a troll's ass. Even with organic strawberries, raspberries, and blueberries.

Apparently, protein powers are very idiosyncratic. What tastes like ass to me, might be delicious to you. Huh. Hope that doesn't mean I have to try every single protein powder on the market to find one I can stomach.

In addition, FYI, yes it is possible to make that puce-mixed-with-purple color without food additives. That weird color is actually all natural. Who knew? If you've ever had a berry smoothie made by natural food nuts, you know what I'm talking about.

As for why I'm even bothering with protein powder, just trying to expand my horizons and low carb options.

I figured out how to make low carb nachos, which was huge. I am going to be doing lots of wicked nacho things in the near future! Pictured are garden vegetable pizza nachos made after that crescent roll cream cheese pizza appetizer everyone used to make back in the 90s. Delish. Recipe here.

Also made Goulash Soup, low cost, low calorie and low carb. Very yummy. I didn't even realize how good it smelled until I left the house and came back. Wow. Good stuff. Original recipe can be found here if you want to try it.

Tonight I will be making lemon caper chicken and hopefully mixing up the first batch of Christmas cookie dough for the freezer.

And exercising.

Last night we went shopping. The toddler has her first pair of jeans. With pink butterflies on the butt. Damn cute.

We managed to buy some Xmas gifts for her under her nose too. Hubby and I make a great team.

It is hard to see the toddler getting so big. She's my first and last making all my firsts as a parent also the last time too. My heart cracked a little when we passed the itsy bitsy holiday dresses for newborns.

Lastly, I am impressed that no one yelled at me for not getting a flu shot. The topic is such a flashpoint, I wondered if I was going to find myself in trouble.

For anyone who wondered, I meant to include the fact that I had the H1N1 shot last year so I am protected there and that is the more serious virus. Ironically, last year, I was not considered asthmatic enough to be given an H1N1 shot from the pulmonologist's limited stash. I had to wait until the drugstores had it available, which was sometime in January. This year? They are all over my ass.

Have a happy Sunday!

Sinus Singularity

So the geeks of the world (not doggin', I love me some hot geekery) like to talk about the singularity, the moment when computers become sentient. The odds of that happening are supposed to be good and science is all 'singularity this singularity that, someday machines will rule the world and hello Matrix meets reality'.

Whatever is all I have to say. There are more important things to study.

Like...what I want to know is who is looking at the singularity of boogers? You know, the moment that mucous becomes self aware enough to camp in your lungs and sinuses like a protester handcuffing themselves to the nuclear plant entrance.

Because I got me some sentient boogers and I don't know what to do with them.

Other than to share that this sick stuff? Is getting very old. So OVER it.

As for the adrenals, they are not happy with 3,2,3 alternate day dosing. To the point, I'm afraid to take just 2mg on days I need to drive. 3mg doesn't feel so hot either now. I feel like I've lost ground.

I have no idea what this means or what the right move is. I know my options, but without any blood work to give me some idea of what is or isn't happening with cortisol production, I don't know if I should tough it out or take more drugs.

I haven't completely tanked. But it is very close. Yesterday was bad, I couldn't function after noon and we had takeout for dinner. Today is marginally better but dinner is again looking like Too Much.

Funny how narrow life becomes with illness. I just want to make dinner and maybe do some squats.

How could that be too much to ask?

Anyway, I still had a great day yesterday. It was so good, nothing was going to bring it down. The toddler snuggled with me in bed and treated me to lots of hugs and 'I wuv you mommy'. Who wouldn't like that? Lovely start to the day.

Then we went to a vegetable propaganda and peer pressure event organized by my mother's group. The toddler got to make tomato salsa, corn salsa, fruit smoothies and veggie pizza. She tried everything but the corn, which I made her try one bite before she could have her smoothie. For the record, this is the first corn she has ever eaten in her life. Go peer pressure!

After the cooking, she got to run wild with 7 other kids.

Then we came home and the little neighbor girl came over for a while before nap time.

Later all the neighbor kids came over and 'put on a show' . I didn't understand the plot at all, but I think I clapped in all the right places.

Basically, what I'm saying, is the toddler was an absolute joy and despite the fatigue and other unpleasant adrenal-ness, it was not lost on me.

17 Day Challenge Update

Well the challenge has not gone well. Thank you prednisone, my wimpy HPA axis, and craptastic lungs.

However, the scaled graciously dropped 5 lbs.

Then went up 5lbs.

Then dropped 5lbs.

Ad nauseum.

Scale ping pong.

The dress seems looser, but it's hard to say.

Here are the first pic (left) and the current one (right). I think there's more loose fabric in the mid section. It was not as tight to zip.

Or maybe it's the same. So hard to say!

If the formatting is wonky, sorry. I am not tech savvy enough to get the pictures to show up where I actually want them to be.





I had to enlist the decapitator to take the pic as I didn't fair much better. Here's what I did when I attempted it on my own. No head. No feet. All boob.



If I'm ever single and looking for a man, I guess I could use this pic as my online dating profile avatar. Or I could 'sext' the hubby, but the green is a little Wicked Witch for me (which is actually why I kept the dress, for Halloween. I don't actually like it all that much. If I had the money, this is the dress I would buy.)

So basically, at this point, I'm looking for a girdle or duct tape to kind of suck in all the floppy bits.

To the Moon

Let's talk blood pressure. I do not know what I am going to do. The second I walk into the doctor's office my heart starts pounding. I can feel it accelerating.

ThumpThumpThumpBaDumBump, OMG, OMG, OMG.

I tell myself to relax. To chill. To not let the anxiety get to me.

It doesn't matter.

The second they put the bp cuff on, this perverse little voice in my head starts wailing 'you have high blood pressure, you have high blood pressure' which then becomes a self-fulfilling prophecy.

So stupid. I am psyching myself out. I even do it when checking my bp at home.

Bp at the doc's office was 138/85 which is not bad considering the last time I was there it was 150/100. My heart rate was up too at 90 and I was sweating.

Doctors, even nice ones, stress me out. As I've learned this year, even nice doctors can hurt you. I don't feel safe, I don't feel empowered, I don't feel like I have any control over what happens to me at the doctor's office.

It's an awful feeling.

My first thought is, since I'm so good at driving my bp up, I can probably learn how to bring it down. That is on my to-do list to research and try.

The second thought is how do I stop feeling like a victim? This is part of the reason why I get so freaked out when I go to the doctor. What are they going to do to me now?

How do I empower myself when I'm without any authority? You can't make doctors take you seriously. You can't make them give you medication. If you're too squeaky wheel, you run the risk of getting a psych diagnosis that will haunt you forever (I have avoided this thus far, as far as I know, but it happens to other patients).

The only thing you can do is doctor hop, but that isn't as productive as one might think. Eventually you run out of money and doctors.

I feel like I'm pretty assertive and that I communicate clearly. If you recall, I've had the hubby come to appointments with me and give me feedback on my communication skills.

I went back to school and took premed classes until I figured out what was wrong with me. How extreme do I have to be to make this better?

Whatever I do, it doesn't seem to ever be enough to compensate for the problems in medicine and its practitioners.

It really feels like an abusive relationship. If I called a domestic abuse hotline and gave the medical system the name Dave, I would be told I should leave.

Who protects patients against medical 'abuse'?

No one.

And that is why my blood pressure shoots to the moon whenever I walk into a doctor's office.

Shock and Awe

Saw my primary doc. Nice person. Listens really well and we seem to dovetail a lot in our thinking. So far.

While they aren't super concerned either about the nagging thing I finally decided to be sure was nothing, we are going to run a few tests.

Here's hoping I am a hypochondriac on this one.

The funny part of the visit was, we got side-tracked by the adrenal stuff. And my doc was horrified, absolutely horrified, to hear what I'm doing with prednisone.

Which is basically taking whatever dose I think will help with zero input from the endo and no lab work to provide empirical data to determine if what I'm doing is the right thing to do.

Oh, hahahahaha.

Isn't that funny?

In a what-the-f*ck-are-some-doctors-thinking way?

It was kind of funny to see the pcp work a bit to maintain their demeanor, they almost let it slip, they were so shocked by my free-range patient status.

So I got a referral to the endo I was trying to get into see a few weeks? a few months? ago. I couldn't make an appointment without a referring physician. My insurance does not require a referral but the Endo. Dept. does.

It's "department policy."

How ironic. Who saw that twist in access to health care coming? Not me!

But now I have a referral and they have to give me an appointment. So take your policy and *bleeeeeeeeeeeeep*.

As for the asthma, it's been really bitchy since yesterday and my PCP was all up in arms about why I wasn't taking Pulmicort and why I wasn't doing a flu shot.

Okay, for the record, I do the flu shot all the time, but this year I don't like the shot. I have some issues with it because of the H1N1 component and that's as deep as I want to go on that issue. It's not a stance I necessarily endorse for anyone else but me in my particular situation.

The science of vaccines is solid. Vaccines work. The implementation though is full of problems.

As for the Pulmicort, all I could say was "I don't care if I can breathe, I want my adrenal glands back and I'm not going to enable the suppression unless I have to. The priority is the adrenal glands."

Also, I am not seriously sick. This is not serious asthma. It's uncomfortable and unpleasant but not dangerous. It is very likely that when I went down to 2mg I hit the threshold where the lack of steroid was going to trigger my asthma.

So yes, when I woke up today I could not breathe. When I talked, I panted. I had cramps all through my rib cage. However, with the rescue inhaler, by the time I saw the doc, all that had passed and I had good air movement.

When they saw the good air movement and couldn't hear a single solitary wheeze, they backed off on the 'Why aren't you taking care of your asthma' lecture.

Asthma can still surprise me, but I feel like I know my brand of asthma pretty well. If things get serious I will take care of it, but right now, I'm not sick enough for anything more than a rescue inhaler.

3,2,3

I have to go back up to 3mg today. 2mg was not happening. I'll try alternating 3 and 2 mg for a while to see if that helps.

My lungs have been pissed the last three days and yesterday I had the pleasure of tutoring in the midst of an asthma attack and fatigue strong enough to make me close my eyes whenever I thought my student wasn't looking.

As if explaining fractions wasn't hard enough.

A sore throat kicked in at the same time. What fun.

Is this the theme now? Every time I lower the prednisone dose, I'm going to get sick?

Oh and did I mention the headache? It's from the adrenal stuff. It is unpleasant.

No exercise. Afraid to risk it.

My blood pressure did tank. Thankfully I can interpret my body's cues and catch this stuff before I bottom out. I ate pickles until the salt made my lips pucker. I had to drive to pick up the toddler and I wanted to keep things stable for that, so pucker up.

Here's what I think I know, I have to be making cortisol. Have to. I don't think you can get down to 2mg and not be making cortisol. I don't think you can go through 2 colds without stress dosing unless you're making cortisol.

So is this some horrific kind of steroid withdrawal?

Or is my cortisol production impaired and stuttering?

Adrenal pain is not supposed to go with steroid withdrawal so???????????

Here's hoping 3mg is all the fix I need.

Still

Still having adrenal pain. Struggling with how I can work out today.

I really want to work out.

How wise that impulse is, I don't know.

Not sure either what to do about the taper. Blood pressure is holding steady. It spiked though last night to 140/90 again which is what happened when I crashed last time. Other adrenal patients tell me a spike up is often a warning sign of an impending crash. So I am not sure what is going to happen or what I should do.

But the adrenal pain is intensifying. Arghhh. Not happy.

Hubby did the groceries. Costco and the 'super store' and it about killed him. He had to take a nap and this is the guy who gives the Energizer Bunny a run for his money.

So glad I stayed home and took it easy. I don't think it would've ended well if I had gone.

I finally got a good pic of the toddler. I am thrilled. We were getting ready to go outside and the light was great, her hat was cute and her curls were perfect. Here are the 2 best shots. Doesn't she look adorable?




I did a lot of photo stuff this weekend since I was on restricted activity; the 2011 calendar with pics from 2010, the Christmas card, the 2009 memory book. I waited too long to do the 2009 memory book, I don't remember dates and events like I should and wow has the toddler changed. Here's a shot from summer 2009. She has changed SO much! I didn't even realize!



As for the rest of the weekend, I made pizza popovers with some leftover puff pastry. There was nothing else really to make, we still hadn't gone to the store and I had meat and milk but no vegetables or any other meal building blocks. (I had the last 2 hot dogs by the way, not the pizza popovers which were not low carb.)

Once we got an infusion of groceries, I made a roast chicken that turned out beautifully except for one mistake. Can you spot it? And no, it's not that part in the foreground that I stabbed clumsily with a meat fork.



I roasted it upside down! That's what happens when you let a mild dyslexic cook. At least it tasted good.

And then I made my lunch for the week. Layered salad. It's a new recipe, I hope it tastes as good as it looks. Lots of veggies in there with hard boiled eggs and bacon. I assemble it each night and then top with the dressing and let it marinate until lunch the next day.


And the hubby started re-covering our dining room chairs. Most of our furniture is second-hand; we save money, it's better for the environment and hubby is handy. This set was from Great Grandma who passed last year, so we get to remember her when we sit down to a family meal. Background is the old cover, foreground is the fabric we're using.



So despite my limitations, it was still a productive weekend.

Gurgle from the Sea Bed

Woke up to the adrenals aching.

Hubby abdicated the day due to illness.

The toddler is 3, in all its ear shattering glory.

3 is the new 13.

With a side of whoop ass.

And not the 13 that gets straight As. More like the punk who shakes other kids down for lunch money.

3 makes me think I should start drinking.

If she keeps being 3 like this I'm taking her to the doc just to be sure it's not something requiring antibiotics to banish that is making her this difficult. She is still gunky in the chest and doing that choking asthma hack so this could be the root cause of the bad attitude.

Any way, stayed home and sedentary today in an effort to take it easy.

Not sure how successful I was. I've been swept under by my Saturday.

The View from 2mg

I tapered down to 2mg yesterday. It seems to be going better than 3mg. Yesterday was a bit rough, but I violated my rule of staying home and doing nothing. Instead I packed boxes with gifts for children overseas for a church charity thing.

Not my church, a friend's church. My father was a minister, retired now, and none of us do organized religion in any way shape or form, we are beyond burned out. Although I plan on torturing the toddler mightily with Sunday School at some point.

So anyway, I spent about 5 hours there mostly because the toddler was having such fun playing with all the other kids, not because there was that much work to do.

It kind of wiped me out a bit though. I had some transient flank pain and the blood pressure sank a bit more than usual. So I downed my favorite adrenal cocktail: pickles and brine and chased it with some sugary stuff. And it was fine.

I am hopeful that I will be off steroids by Christmas. Then we see what happens next. Will exercise tank me again? Will any medical professional give a sh*t if it does? How many prednisone refills will my endo give me before either deciding I'm an addict or thinking gee, maybe we should like, you know, collect some empirical objective data on this because maybe there's something more serious going on?

Today I have stayed home, although I called to make a doctor's appointment for a nagging issue that has not resolved since March. I am not at all worried and am just doing my due diligence, but it's one of those things that until they know for sure it's okay, it's like DEF CON 5 to a doctor.

So I may have to traipse out to see the doctor today.

I purposely waited until noon to call so I could make an actual appointment and not get rush treatment.

Listen, I REFUSE to have any more problems. There IS NOT GOING TO BE ANYTHING WRONG.

Got it?

Also, while we're at it...a quick shout out to my stupid gallbladder. STOP SPASMING you wimp. You don't have stones*. There's no need to have a seizure in there. WHY are you bothering me??????? Sit down and shut the hell up. I don't want to hear a peep from you unless there's a stone so big I can palpate it myself. Until then I am IGNORING you, you jacka$$.

Oh. Hahahaha. They just called. I must've been convincing, they gave me an appt for next week.



*My gallbladder periodically behaves badly. So badly I can't sleep on my side for months at a time, too painful. There are never ever any stones. It's never anything except painful. I have had this off and on for about 6 years now. Someday I will get to a GI doc and probably find there are GERD related gut motility/functional issues like my Dad has.

PS: I responded to comment on the last post IN the comments. Just FYI.

It's ON Bitches: The 17 Day Challenge (Includes picture of my fatness)

The toddler's preschool has been steadily extorting us out of money since before school started. Our first week, we were hit up for $100 worth of tickets to some dinner dance, which was kind of a shock.

I hadn't expected the preschool to be constantly panhandling. So far in the first month...

-I spent $50 on dinner/dance tickets
-Spent $40 on fundraiser books
-Bought $10 worth of fundraiser popcorn
-Agreed to let my child play with lighters so the school could earn $20 from a consumer product safety testing company. (Allegedly this money will fund a free Breakfast with Santa, assuming we're not all dead from a house fire.)

And the tuition ain't cheap, either. It's actually one of the higher ones, something I hadn't realized until now.

So when the hard sell for the tickets started, I shared that the only other people we knew who would be willing to shell out that kind of money would be our babysitters, the grandparents.

OH, that's okay, I was told, they can buy tickets and just not come.

Uh, I don't think so. Not in this economy, sweetheart.

So the upshot is, the hubby and I bought 2 tickets and now I need a dress.

In 17 days.

Luckily I kept most of my nicer 'fat' clothes and even shoes. This whole time I've been losing weight? I haven't bought a single piece of clothing due to weight loss.

Therefore, I do have a dress. Pictured to the left here (taken two days ago). Yes, I am missing my head. This is what happens when you instruct the hubby to get the whole dress in the photo, he's very literal.

I need to lose like 10? 15? 20? something lbs to really fit into it well.

The good news is, I can zip it and if I don't breathe at all for the entire night, I might be able to squeak by.

However, for my own oxygenation, it would behoove me to lose some serious weight in the next 17 days.

The bad news? I don't really have anything else to wear if the dress doesn't pan out. The hubby is worried I will actually wear sweatpants and my Winnie-the-Pooh nightshirt as threatened.

So the 17 day challenge is ON. Let's see what I can do if I really focus, shall we?

Assuming the rest of my health cooperates, I mean. If the adrenals or asthma get bitchy, I'm not promising anything.

And no, I will NOT be wearing the orange socks. Those are for if I wear the dress before Halloween. Since the event is closer to Thanksgiving, I'll be wearing my fluffy turkey slippers.

Are you not reading Vogue? Yeah, me either.

Pay, Pay, and Pay Some More

That is the motto of our new health insurance.

Late last month, we finally got all the benefit information for 2011 from our employer.

Oh. My. Goodness.

Does anyone else spend hours on insurance stuff this time of year?

Or is it just us?

My head hurts.

Now we have exactly 5 days to figure out which end is up.

Yesterday we spent about an hour doing some virtually guided benefits adviser thing.

Trying to figure out the best plan for when you have a tumor in your lung that is probably NOT cancer but it COULD be cancer and what if you need a lung removed next year?

We picked this new plan, the one our employer is heavily pushing, where we open a flexible spending account with an investment company. We contribute and then pay out of that account for about $6000 annually until the insurance kicks in.

The idea is, if you don't have any major health issues, you can sock away money year after year and build a medical investment account. Like I told the hubby, it's really a 401k for your health.

But it only really works if you don't use it.

Hahahahahaha. That's a great punchline, isn't it? Here's health insurance that is only affordable if you don't use it.

Oh man, I'm going to hurt myself snorting in derision over here.

So the thing was, the employer sent us a brochure with all these 'real life' case studies where every. single. family. was better off with the new 401k-like health plan. There was not one example where a family should pick another plan. The brochure also stated that the health plan was ideal for healthy people.

Anyone here think I am a healthy person?

More like health impaired if you ask me.

So I wrote to the benefits department and was kind of snide because I was pissed that the brochure was a heavy sell marketing campaign not a tool to actually help people make a decision.

I wrote: It's great to see so many case studies and how every single time the best option is The Health Plan You Want Us To Buy. Are there case studies that show when other options are a better choice?

To which they responded by directing us to the virtual benefits advisor.

We estimated our needs based on this past year, which is the worst medical year we've had in a while. 1 short hospital stay. 2 ER visits. 10 specialist appointments a year. About 5 primary care visits a year.

The virtual benefits advisor smarmily told us, based on all our information, The Health Plan They Want Us To Buy is the best choice for our situation.

So the big question is, am I in good health and just don't know it? Do healthy people commonly end up in the hospital and ER? Is that the definition of healthy? Please enlighten me.

Granted, this plan is likely the cheapest in terms of day-to-day costs. Most of my medications will be free, which saves about $1,000, but all doc visits and labs will be out-of-pocket. The big question mark is how that trade off works. Will I spend less or more on labs and doctor visits than medication? Can we actually save some of the money we contribute or will it all be spent on medical care?

We have not been given the information to calculate projected answers to these questions--just that heavy handed, rub our noses in it, marketing brochure. I have asked for price lists so I have some idea of how much the CT scans I'll need will cost. It seems unethical and almost criminal to burden people with such a large out-of-pocket deductible and not give them the price list.

I am sure the Benefits Dept. loooooooves me, but it galls me that I have to ask, even beg for this info. Makes ya really feel like a "valued employee" don't it?

The other thing that bothers me is that side by side financial comparisons do not tell the whole story. They also need to factor in when benefits kick in and how much. A lower deductible plan may have a higher total pay out, but barring a health disaster, it may provide more benefits for run-of-the-mill health stuff. This is the math that the employer is not doing or providing to its employees and I don't feel like I have enough information to run those numbers by myself.

I continue to be 'for' health care reform, but they need to work harder on not just access, but affordability. I do not have major health issues, just chronic ones, and it is killing us. How do people on dialysis or with diabetic complications or those in need of heart surgery survive?

There also ought to be a law on how large employers 'pitch' health care. Since,apparently, they aren't going to be ethical about it on their own.




*I say 'our employer' because I have my pension and what not there still even though I'm not currently employed there.

My Big Secret

First a housekeeping note: This blog now allows anonymous comments. I learned the inability to do a url/name comment was causing some people problems. So I think I have fixed that. Unless I get a bunch of nasty trolls, anonymous is fine. Just type in some kind of name so we know which Anon is who.

Ezekiel asked...

"My next question, why taper so quickly? You seem to be struggling with the current taper schedule. When I was coming down from 5mg, I went to 4mg for six weeks, then 3mg for six weeks etc. I actually got down to 1mg, but my symptoms came back and I had to go back to 10mg for a week then back down bi-weekly until I got back to 2mg where I've stayed. Some of my fellow patients have tapered started at 5mg then every other day take 4mg for two weeks then stay on 4mg for two weeks, then every other day with 3mg etc.

Hope I haven't overstepped. I just know how miserable it is to come off too quickly and I want to help if I can.

Thanks again for responding. "

Okay, here's the big secret.

Are you ready?

Can you handle the truth?

I'm going to SHOUT so brace yourself.

I HAVE NO EFFING CLUE WHAT I AM DOING!

NONE.

I AM MAKING THIS UP AS I GO.

BECAUSE MY ENDOCRINOLOGIST ISN'T DOING ANYTHING OTHER THAN PRESCRIBING PREDNISONE.

THAT IS THE SUM TOTAL OF MY MEDICAL CARE FOR SECONDARY ADRENAL INSUFFICIENCY.

I'm not shouting at you by the way, just into the wind. So it can throw the spit back into my face, that's the only way I'm sure I'm actually making any noise. I can't tell from the complete absence of medical care if I'm really getting the words out or not. Maybe I'm secretly a mute and didn't know it. Or maybe the doctors are all deaf and they don't know it.

"Here's some prednisone, now go away." That is all I get.

Okay, yeah, I got a suggested taper, but, if the science says that anything over 5 days over 5mg is going to make the hypothalamas-pituitary-adrenal axis suppression worse, would you follow a dose that told you to take 15mg for 15 days and then just stop cold turkey? Especially when dropping from 10mg to 5mg just about brought you to your knees?

I didn't think so. (And I have disclosed to the endo what I'm actually doing for the most part. They know what I think of their taper and literally gave no response at all to my concern, just a shrug.)

Sad, isn't it? Especially considering the risk. Can you imagine if I knew NOTHING and was trying to sort this all out on my own? I could easily kill myself.

Hey, would you like to meet my real doctor?

Say hello to....ME.

Yep, I'm practicing medicine without a license.

As for your comment, your suggestion is a good one. I do think I'm going to have to camp at lower doses for longer periods of time before continuing the taper. At 3mg I am mostly functional but it is not easy, I have to push myself. Exercise is only happening because not exercising is starting to hurt. My body needs me to move, so I'm moving.

I am going to try 2mg later this week and if that goes okay, I'm going to sit on that dose for a while. Maybe the rest of the month. We'll see.

For the record this is the slowest taper and lowest dose I've ever done.

As hard as this is, I am taking the following as a BIG positive signs:

1.No adrenal flank or back pain
2.Haven't been forced to bump up the dose through 2 colds now which, I think, is HUGE.

If I don't have to stress dose, I must be making cortisol. Just a question of whether or not that will hold up.