And So It Begins

I see that the pumpkin recall made national news, including stories questioning the motives of companies that wait until no one's paying attention to announce problems.

I wonder how the CEO of our grocery chain spent his holiday? Does he have small children? We spent it worrying about getting sick from food that wasn't safe to eat, with no information on potential health effects.

Jerks.

Next year I'm making my own pumpkin.

Assuming I ever get out of steroid prison.

Today I am tired and the pain of withdrawal has started. Advil and Tylenol have allowed me to get ahead of it and I hope it abates quickly.

Last night, I had the fiery pain in my stomach and back and felt like I was going to be sick. I went to bed and things stopped being weird.

Also having issues with keeping warm and shivering a bit. Can not express how much I love my heated mattress pad. Heaven on earth.

Yes, I can always take steroids.

But I don't want to feed withdrawal and if there's some relative adrenal insufficiency (the difference between being clinically normal vs. optimized) I don't want to delay recovery with more steroids.

There are patients with normal cortisol levels who go on to flunk tests like the ITT (Insulin Tolerance Test) so it does happen. However, the odds of me finding a doctor who would order any further testing and then the odds of flunking the ITT are so remote it would be like trying to collect lottery winnings when you live on Pluto.

At least I should lose weight, right? There's some consolation in that.

Daring

I got brave and tapered by 10mg. Not sure yet if it is an improvement, but no muscle pain at least. Got a brief appetite surge, similar to the rice incident.

Depending on how I wake up Wednesday, I may not take any.

Might as well rip the band aid off fast. It's only been 8 days since I started and I kept the dose mostly subphysiologic, so hopefully that will help.

Pretty much planning on losing the month of December to the side effects of this mess.

Oh sheesh. The yellow lab, Minus a Brain, just horked up three huge piles of vomit while I was typing this. On three separate area rugs, naturally. Yay. Why does this always happen when the hubby isn't home? Gak. I'm already gagging.

Anyway, I keep saying mean things to myself about the whole thing. Like 'I'm an idiot.' But you know, at least I made sure to get the blood work. If I hadn't, it would've just made things worse.

So if I start losing weight again and all that jazz WTF does that mean? Is it just my weirdo withdrawal? Am I steroid resistant? The steroids have not had much impact on the asthma, which is how I ended up in the hospital in 2010.

PCP tells me to talk to the endo. Endo tells me to talk to the PCP.

Medicine at its finest.

Well at least I'm not the only one confused and frustrated.

On that note, I'm going to find some gloves and clean up vomit. Yippee.

AM Cortisol

The am cortisol came back at 18.

Which is fabulous. I am actually thrilled. Wish I felt as good as the numbers indicate I should.

I will point out, remember in July the am cortisol was 13. So I clearly continued to recover and my system was not optimal between then and now.

Which I was saying that all along, however, this provides some evidence of the gap between clinically normal and real-life normal. Always good data points to have. Also, a good argument in favor of stress dosing.

The endo thought the steroids wouldn't be helping me in light of such a good am cortisol. However, they are. They allow me to eat and prop up my energy.

I didn't get into steroid withdrawal with the endo. I should have, but I'll be seeing them in a few weeks anyway.

The plan is to try and wean, which is terrifying to contemplate. I finally feel good and now I have to go back in the hole--the fatigue is lurking, waiting for me to open the door.

I'm waiting to hear back from the PCP what they want to do.

My sense is that a wean will put me back to not eating and no energy to function. Practically speaking, I will probably end up taking a booster dose of steroids on the days I work until we can figure out what is going on and come up with a plan for it. Not thrilled about that, but, at the moment the name of the game is keeping me upright.

If you have any ideas, I'm all ears.

Monday Brings the Pain

Sunday was the flip side of Saturday. It started nice enough. I let the hubby sleep in since he was sick. Everyone was mellow. Then the toddler messed up her big toe pretty badly, so now we are both limping.

By the way, two other people I know took bad spills over Tday. Clearly, it is dangerous to even know me. If I were you I would run I mean walk away very carefully while holding on to a railing. Any running around me is bound to be fatal.

Then the toddler did her best to convince us we were such incompetent parents that blind wolves with rabies and lobotomies would do better.

Attempts at crafts devolved into tantrums with accompanying sonic booms.

I offered to read books. Play games. There were time outs. Loss of privileges. Discussions about making good choices. Nothing worked.

On the upside, she was drawing rainbows and people, which is a first for her and why she goes to OT. I was super excited and hung every single picture she brought me on the wall, absolutely tickled pink. She then pitched a perfectionist fit and stormed off.

Sigh.

Growing up is harder than I remember it being.

Thankfully, I had a stash of Christmas dvds that saved the day.

My ankle is still twice as big as it should be with limited mobility, but the pain is much reduced. Since my energy is better, this means I want to exercise. However, I am unsure as to how far I can push it.

So that's what's shaking. Off to call endo to learn my am cortisol was normal.

My Thanksgiving

Saturday was my Thanksgiving. We had a great family day. Put up the tree. Did the Christmas lights. Hubby watched football. I read The Immortal Life of Henrietta Lacks in one sitting. I don't often get time to just read. When I'm adrenally whacked, I don't have the focus to read. When I'm healthy, I'm too busy to stop.

We rolled up brie and reduced sugar jam (black cherry) in ham. Wow, that was really good stuff. Roll your eyes back in your head good. (If you eat bread, a grilled cheese with this would have been orgasmic.)

You could say my appetite is back to normal. Food even tastes good again.

Despite the ankle and a developing cold, my energy was really good. Did not need to nap at all. Able to keep up with the day. Would have exercised except for, you know, the ankle.

Hubby is down for the count with the cold too. I have a light touch, he's hurting. I feel bad for him as I am really the last person to look to for sympathy.

So I think that means I have sympathy for him because of my lack of sympathy? Huh. Need to work on my sense of logic.

Still at 15mg. 10 in the am, 5 at noon. Seem to be okay for the day after that. I would skip the noon dose, but my body wilts. The fatigue sets in, my limbs get heavy and it's either bed or 5mg.

What's happening now is not what was happening before. If this is HPA axis suppression, it's a new version. One in which it feels like my body is not showing up for work.

I used to just take one am dose and, after an adjustment period, I would be fine (other than steroid withdrawal). That's a pretty big simplification of what I went through, but as bad as it was, I didn't feel like my battery died in the middle of the day. Like my body was just blank inside, not remembering what it was supposed to do or understanding what was missing.

I thought I was tired before? That energy was low? I had no idea. This is a new level of hot mess. There's no adjusting. My body is empty this time.

However, I am fully expecting my am cortisol to be fine and that I will be told to wean as of Monday. At which point I will pitch the idea of steroid resistance. As if anyone will listen.

Is there even a test for that?

I worry about taking steroids when I don't need them. I worry about not taking steroids if I do. I worry about missing something else.

Praying there's a clear signal one way or the other.

Black Friday

Spent Friday doc hopping.

GI follow up to learn the polyp was a fundic polyp likely from GERD med use. Which is pretty much what the internet told me (and yes, I know, I was whigging out good about the growths, the growths of doom! So sue me.)

No signs of Barrett's, which is great news. Doc says science isn't sure if GERD meds prevent Barrett's or not, but, comparing my experience with my parent--20 years of nothing vs. 20 years of GERD meds--I have to say the meds seem to be winning.

If I get brave, I can have the surgery to tighten the sphincter if I want extra insulation from Barrett's. Which sounds like a nice idea, but I'll hold off until the adrenal demons are done with me.

Oh, and no more scopes. The post-op nurse must've been reading someone else's file because I do not need a colonoscopy. Or any endoscopies in the near future. Just lots and lots of Nexium and I'm good.

Then off for the ankle x-ray. When I woke up Friday morning, I could not put any weight on it for several hours. Between alternating doses of Motrin and Tylenol, plus a wrap and a shoe, I was able to put more weight on it, but not walk. Eventually the joint went numb which was a blessing.

Xrays didn't show a break, but I was put in an air cast because of the sprain. That has actually been very helpful. I didn't realize how much help just stabilizing the joint would be. You would not even guess that I had seriously considered picking up some crutches at one point, that's how great the air cast is. I even stumped around Target for a bit because I forgot it was Black Friday (thankfully, it was later and everyone had already been trampled to death). Hopefully it will heal quickly.

By the way, did you know they sell air casts to just anyone at drugstores? I could've saved myself a lot of time and money if I'd known that! Instead I took the two hour route to a prescription for one, which I didn't even need!

Note to self: Check the drugstores before the doctor's office next time.

Oh and if you want to make a doctor laugh, wrap your ace bandage too tight over your Santa socks so that your whole foot is covered with imprints of Santa.

Energy wise, Friday was the best day yet. A little tired but definitely 80% good and only 20% tired. I'll take it! Eating was finally more normal. Took only 15mg. Serious thumbs up.

I really think the family drama on Tday was pulling me down as Thursday was horrid. Really horrid.

And no, I didn't find the ankle stressful at all. I'm sure physically it was, but I had no emotional whig out about it. Broken bones that don't break skin do not worry me. At all. I've broken this particular ankle twice before, once doing almost exactly what happened on Tday. Plus I broke a rib and my arm twice.

Yes, I am a walking disaster.

The point is, breaks hurt, but they are not life or death. Sometimes there's nothing they can do anyway. Like with the rib.

I also remember the time the toddler put her hand in the car door as I was slamming it shut. The door latched around her fingers. I gave her a hug, checked her fingers and took her to lunch as planned while calling the doc to set up the x-rays. The mommy friends with us were horrified and I think they thought it was weird that I didn't freak out.

Do you know some of them avoided me after that incident? Look, she needed to eat if we were going to spend hours getting x-rays. Eating also distracted her from the pain, plus she got a happy meal toy, which, same thing. And, no I will not be running in circled and flapping my hands like a decapitated chicken. That doesn't help the toddler. Medical care was delayed like an hour. Oh the horror! Call CPS!

So that's how I handle suspected broken bones. Unless my femur is in pieces sticking out of my leg with copious amounts of blood, it is a non-event.

Maybe someday this adrenal unpleasantness with be a non-event too.

Except, I still flip out about blood. Not so much mine, but the toddler's. Gasping in horror and everything. I know it's not serious, but my baby bleeding makes me go DEFCON 5. So there may be no hope for me.

You Are So Going to Roll Your Eyes

Thanksgiving was such a mess. All I can do is laugh.

First, I think I broke my ankle. Maybe. You aren't surprised at this point, right? Of course I would (allegedly) break a bone. The sidewalk looked even to me, but it was about 3" higher than the next panel. I rolled my ankle. Badly.

The entire joint is now swollen and I can't walk normally or do stairs. Initially, I could put weight on it, but not so much this morning.

I would kick something, but I only have the one good leg. Don't want to risk it. Not with my luck!

The real bad news is we have a New Year's Eve wedding invite. As in dancing. Staying in a hotel without the toddler for the first time in over a year. I knew there was a reason I hadn't bought a dress yet!

Hubby wanted me to go to the ER and I refused. Outright refused to be bothered by a maybe broken bone, which could be nothing more than a teeny tiny fracture that won't even require a cast (had those kinds of breaks before). I wrapped it, elevated it and told it to kiss my grits. That's about all I planned to do unless there were obvious signs of instability in the joint.

That's what I said yesterday.

This morning, the tune I'm singing is more.... Wow. This is much worse than I realized. I think maybe I went numb with denial there for a minute. Wow. Bad. Muscle strains from the arch up to my knee. Serious pain in the joint and it doesn't feel right. Will try to get an x-ray today.

After the ankle incident, we went home and saw on the news that the pumpkin in the pumpkin pie we've all been eating has been recalled. Don't eat it, they say. No information on what to do if it's too late for that. They don't know what the problem is but they do know we shouldn't eat it.

Great.

All my pies went into the garbage.

Some consumers have posted notes about diarrhea on the various news websites. So at least I won't panic about an adrenal crisis.

The thing is, my sense of taste has been off all of a sudden--food doesn't taste right or even good most of the time. I thought the pumpkin was funky, but everyone else said it was fine. So I just assumed it was me and my wonky taste buds.

On top of that I was exhausted all day. Just really wiped. I don't know if all the activity Wednesday was haunting me or what. Don't know if I'm just still digging myself out of the hole and recovering from the last few weeks or if something else is going on. Don't know anything other than steroids are like an on switch.

Arrived at Thanksgiving and was comatose with fatigue. Couldn't even talk, just whisper like a lame-o. Had to lay down until the 5mg dose kicked in and then I could talk and function.

I have lost yet another pound, but managed to eat stuffing and mashed potatoes. The turkey tasted funny to me so I fed it to the dogs. Then I fell apart again. It's like my battery just dies, so another 5mg and that seemed to do the trick for the rest of the day.

When it kicks in, I sit a little straighter and engage. It's really bizarre to feel that kick.

So I am doing better, but it's not perfect. Not yet.

One good thing, this has been the first morning I didn't wake up with bone crushing fatigue. That's a pretty significant change. Let's hope it marks the true beginning of more good than bad.

Thanksgiving Day Reading

Slowly recovering and had hoped not to need more than 10mg, but ended up taking another 5mg. I've had energy deficits too big for the steroid dose before, but instead of taking more, I really wanted to try and out rest it.

Except I couldn't wake up still. Some of it is that I need one more night of good sleep to put the bad night of sleep behind me. I really do not handle lack of sleep well, some combination of newborn sleep deprivation PTSD and adrenal weirdness. After the 5mg boost...

Positive dance sign for the win!

*fist pump*

Fatigue was still with me BUT I zumba'd to two songs from Bette Midler's Christmas album. (MP3 download is $5 and well worth it!) Two whole songs! Without sitting down! Without heaviness in my legs! No, it was not the best music for Zumba, but it was a lot of fun trying!

I've also had a positive caffeine sign. Actually wanted my drug of choice yesterday: Coke Zero. I've not been able to finish one since 11/2. Have not even cared if I had caffeine (which for those of you who drink caffeine, you know how weird that is). Well, now I want it which is good even if it's not a good-for-me habit.

Then I crashed and burned. Just did too much, too fast. I need to slow down and rest or else I'll have to take more steroids.

Still, overall, a MUCH better day. Very thankful.

My gosh dang cortisol better fricking come back low. Or else my body makes NO sense whatsoever.

In the event that it's normal, I found an article on steroid withdrawal and the quote below seems pretty relevant to my situation. The theory would be I had the crisis due to long term steroid use and DUH! I need to stress dose. The steroids used to treat the crisis then triggered Steroid Withdrawal Syndrome which, in me, scales up to the umpteenth power. This is what you call 'can't win for losing.'

Full text of article is here: http://www.eje-online.org/content/153/2/207.full

"The form of SWS that we have described, characterised by anorexia, nausea, lethargy, fever, arthralgia, skin desquamation, weakness, postural hypotension, vomiting and weight loss, was recognised as early as 1960, although the exact mechanism of action is not clear, nor is its prevalence (3, 4, 7, 8). Suppression of the HPA axis by the hypercortisolaemic state, whether endogenous or exogenous, was initially thought to be responsible, until the axis was shown to be normal in these patients, with normal baseline cortisol levels (7).

Subsequently, Amatruda et al. demonstrated some suppression of the HPA axis in these patients but, importantly, serial plasma and urine steroid levels were within normal limits, and there was no correlation between the status of the HPA axis and the severity or duration of SWS (4). Hence the condition was attributed to a state of ‘relative adrenal insufficiency’ as tissues had been exposed to high levels of steroids for a prolonged period. It is thought that these individuals develop tolerance to glucocorticoids, such that the replacement doses used are inadequate to allow correct functioning of the central nervous system and other organs (3).

Tyrrell describes the possibility of a relative state of glucocorticoid resistance in these patients, effectively rendering them hypoadrenal (8). In more recent studies, a rise in the level of interleukin-6 (IL-6) has been linked with the acute form of SWS occurring immediately after surgery for Cushing’s syndrome in patients who were hypocortisolaemic, and a similar symptom complex was noted after infusion of IL-6 (9, 10).

Papanicolaou et al. found that even by day 9 or 10 postoperatively [for Cushing's], when these patients were on glucocorticoid replacement, IL-6 levels decreased but were not back to normal (9). Alterations in the concentrations of a number of other mediators have been hypothesised to play a role in the development of the SWS, notably CRH and central noradrenergic and dopaminergic systems, reviewed in more detail by Hochberg et al. (3)."

AM Cortisol

Did the am cortisol.

Quick tip. If the blood is just not flowing. It's not your crappy veins, but rather a crappy collection tube. Ask for a new one. Preferably before you are stuck multiple times in search for the ever elusive 'vein with blood in it.'

This has happened to me so many times, now I know to ask for a new tube.

Gnawing hunger woke me up at 4 am and I was super loopy from what I assume was low blood sugar (why my body doesn't just tap into my copious fat reserves I don't understand). This was the first blood draw I tried to sleep through.

Because of the hunger, I held off on the steroids wanting to see how things changed with food. I fasted because I always convince myself I'm supposed to, and you never know what else is on the order that might benefit from fasting. So I staggered to the car, my head lopsidedly heavy and ate a granola bar.

That helped with the wobbling and general titl-a-whirl feel to the world, but the fatigue was still there.

Still I held off. Because I really do hate steroids. They are not without risks and problems. I would prefer to know I need them than to think I need them.

When the fatigue wouldn't let up (I believe this is an example of magical thinking because what exactly did I think was going to be different?), I did take 10mg as planned. We will have to see if that's enough. I do believe I have some cortisol production of some level. I don't know if I need a full physiologic dose or even daily steroids, but I could be wrong.

Lost 1.5lbs.

Appetite seems to be better now with 10mg. Fatigue is not as profound. I am still tired but am missing sleep and it could be I need more than 10mg. We'll see how 10mg day 2 goes.

Data Before People

Going for an am cortisol this morning. Wish me luck. I have a hard time believing it will be normal, but my body has been weird before. The second that needle slips out? I will be slamming back Hydrocortisone like a sorority pledge in a jello shot competition. I fully expect the day to get better from that point.

We are now up to two cars that stall and don't start reliably and generally act like junkyard statues. One is an older Ford van and the other a quite new Honda, which we babysit for the parent living in the Caribbean.

No mechanic can find anything wrong with either car. As you may recall, we took the van to three mechanics trying to find a fix.

The van never malfunctioned for anyone but us. If it hadn't acted up for the hubby I would've been told (by the hubby) it was all in my head.

Same for the Honda. In fact, my default assumption when things go wrong with a car is that I'm hallucinating until it happens to the hubby too. Which it did with the Honda.

The mechanics rely on cutting edge technology that uses computerized diagnostics. They don't even have to lift the hood anymore. All the diagnostics come back normal, of course.

Which leads to the following exchanges:

"The car's fine, tests perfect. Bye."

"Wait, what if it stalls on the highway?"

"It's perfect. The diagnostics say so."

My question is, what happened to critical thinking? Or digging around in the guts of things to find the answer? How is it that a computers can so quickly usurp a first hand report?

I told the hubby, "This is just like medicine. They want to bring in computer models for diagnostics there too. Watch, we'll all be normal because the computer can't do math high enough for patients like me and the physicians, just as they do now with tests, won't go any further than 'the computer says you're normal'."

The hubby laughed. "Meanwhile we'll all be having heart attacks in stalled vehicles with a semi barreling down on us."

"Yep...unless... what if our cars are possessed by the maverick spirit of my late grandfather?" I tapped my chin. "He would totally do that to me. Maybe what we need is an exorcism."

"An exorcism?"

"Or...do they do acupuncture on cars?"

I'm calling it right now. The big trend for car owners is going to be complementary therapies where all those 'perfect' cars can find some help. Feng shui. Acupuncture. Past life regression for steel. Reiki for your ride. Gas with vitamins. Homeopathic car wax. The list is endless.

Meanwhile, I'll be looking up exorcism rituals.

The Push to Push

I'm trying out a new blog name. One that doesn't make website filters choke. Possible other changes to come...

My current fatigue coping mechanism is the memory of everything I did with an am cortisol of 1 back in the late 90s.

I drove because I had to.

I showed up.

Exercise... was a disaster. Umm, let's just pretend I didn't write that.

Moving on...

There was no pansy-ass wilting. Granted, the symptoms are harder on me, but I also bet my am cortisol is higher than 1.

So when I think I can't do something, I just remind myself of all I have done and will do again.

Sunday seemed better. (Oh please don't let me jinx myself writing that!) Still tired but no nausea and reduced stomach pain. Had a 'positive dance sign' but had to sit down as the fatigue just pulled on me like an anchor.

I think I may have figured out the trigger. My family is being particularly whackadoo of late and some of it was not only directed at me, but dumped in my lap for me to fix.

Sometimes families suck and mine is pretty good at that. We have pulled back on our holiday plans, staying close to home, keeping things quiet and avoiding the people who are stressing me the f*ck out.

I am beginning to think that some things need to change and maybe we won't be doing every single holiday with these folks going forward. Time for less involvement, not more.

This is one reason why I had hoped the hubby's cross country gig would work out. Some genetic isolation would be welcome. However, it did not pan out. Which is good in the sense that there was a fatal shooting at his hotel during the interview--never a good sign when that happens especially if first responders are FBI and ATF, not local police-- and the town recently caught on fire requiring massive evacuations.

Pretty sure the second I set foot out that way, the apocalypse would officially begin.

Oh, To Be 11 Again

I remember how I felt with an am cortisol of 11. This is not as good as that. Nor is it as bad as last year. I went back and read the posts. I'm better than that, or maybe I'm just bad in a different way this time given that, Friday, I had to lay in bed for several hours and pray I didn't end up in the ER.

Before things got dodgy, I called the endo and requested an am cortisol draw. The thinking is, if I am low now, let's document it in case I later gain ground. (Or lose ground as the case seems to be.)

They never called me back, which is unfortunate as things are much more serious than when I initially contacted them.

If I had to guess, I would say cortisol is below 10 but above 5. (Let's see if I'm right! What's your bet?)

The recovery feels very adrenal, but is it because I was on steroids and went through my infamous version of withdrawal or because I had a crisis? It's hard to know.

The weight loss makes me lean more toward a crisis. The duration of the symptoms makes me lean toward a crisis as well. It's been over a week, acute withdrawal should be gone by now. I should not be in fear of a crisis, but I am because my body keeps going there.

Friday was frightening. I am glad I held my own.

The other thought nagging my intuition is not a good one, but it's just my intuition, so we don't have to listen to it. Could this be some kind of cancer? All these growths? All these symptoms? Strange (for me) weight loss?

I've lost weight. Those pants I bought? The ones that fit me now? Don't need to be unbuttoned to be pulled down.

Then I think maybe we should check for diabetes. Although I'm not peeing and had a non-fasting blood sugar of 93 in late September (go low carb!). It seems unlikely and the PCP was not concerned when I brought it up, but, I don't know, it's just one of those gut things that nags at me.

There is zero family history of diabetes, on either side. I'm hoping those genetics are strong enough to counter the impact of steroids. Pre-diabetic I can live with, but diabetes scares the pants off me.

Can you imagine? Asthma, diabetes and adrenal weirdness all in one body? That would be a death sentence.

Before things nosedived Friday, we put up our snowflake mobile and did some light Christmas decorating. Already? Yes, already. It's a happy thing for both me and the toddler. We won't break out the big guns until the day after Thanksgiving,which is about as long as I can stand to hold off.

Some people even have lights up and we did our first light drive Saturday night. I don't mind people decorating early. I hate the Christmas before Halloween retail push, but people enjoying the season a bit early are okay in my book.

Saturday I was tired and doing the sad zombie shuffle. Had some stomach and flank pain along with nausea, but the other GI stuff, while continuing to threaten me, has calmed down--Thank you all that is holy. Dropped off cars at the mechanic, went out to a delightful lunch with the hubby, to the store, and then to bed. No appetite for dinner, but I managed to filch some of hubby's chicken wings... and then couldn't finish them.

e Patient White Paper Links

Someone said the links in my post on the e patient white paper weren't working. Try these:


Copy/Paste into your browse: http://e-patients.net/e-Patients_White_Paper.pdf

Or check out the Google search results for e patient white paper.

Primal Hunger Takeover

Adrenal Update: So, as I posted yesterday, things began to decompensate. Once I could leave the bathroom, I went to bed, turning the mattress heating pad on high as I was cold and could not get warm. The whole thing was very similar to the crisis but at about 40% power--no shaking, no vomiting, not the same intensity in the stomach pain.

Rest seems to have allowed my body to get ahead of the problem. I am trying not to take steroids as I want do an am cortisol draw to establish what is happening, but the endo has been so slow to get back to me, this may not be safe.

Will update more tomorrow. On to today's post...

The other day, I made some rice. A large bowl.

The next thing I knew, my body was dumping in a week's worth of butter servings and shoveling it down my gullet before I could say no.

Seriously, body? We're going to make up the calorie deficit with rice and butter?

What am I? Gluten free in prison?

What happened to cheesecake?

Or pizza?

French fries?

I'm all for carb loading given how little I've eaten lately, but plain rice? RICE!?!

Come on. I want to enjoy it at least. Just give me a few minutes and I can get us something better.

But my body basically looked at me like a feral animal and said 'Lucky for your dogs you made some rice.'

Oh.

OH.

*blink*

Meanwhile, the spoon never stopped shoveling.

When hubby came home, I said, "I made rice to go with dinner."

"What rice? There's not enough."

"No, there's a cup there. You need more?"

"There's not enough." He showed me the bowl and indeed, other than a meager spoonful, the rice was gone.

"Oh. Sorry. You can make more."

"You ate the entire bowl?"

"With a stick of butter." I gave a weak smile.

"And your pants still fit?"

"Actually, I'm still hungry."

So I had a pint of Ben & Jerry's Karamel Sutra. Because who the hell binges on rice?

I have my pride you know.

And no, no weight gain but no loss either. My appetite disappeared the next day again so...???

Adrenal Alert

Once again...sick. Just not vomiting yet.

Once again...having a hard time getting a hold of hubby. He's at work so should notice soon that I called and texted. Oh, there he is now calling be back.

I'm not vomiting. I think this is a good sign.

But other GI symptoms are active. Plus light headed, weak and dizzy. Having a hard time not making stupid typos. Week. Lightheading.

Tomorrow there's a post ready that was before this moment. Keep that in mind when you read it.

The Link Between Severity and Attitude

Updated: If the links aren't working for you, try these:

http://e-patients.net/e-Patients_White_Paper.pdf

Google search results for e patient white paper

I am currently reading the e-patient whitepaper which is packed with information on patients and the internet. The only complaint I have is the document won't allow any copy/paste making it impossible for me to keep track of pertinent or especially salient passages.

However, I did go through the effort to grab this graphic showing the relationship between severity of illness and patient attitudes toward physicians. As you can see, I have no skills because, despite trying, I can't get the size to be anything close to readable, but if you double click on it, you should get an enlarged image.




You can read more about it here starting on page 28. What is your attitude? Accepting, Informed, Involved or In Control?

The more chronic or serious the illness, the more a patient uses the internet the more likely they are to be an In Control patient.

I'm somewhere between Involved and In Control (which I would have more accurately labelled 'Wants Control But Is Ignored By Physicians' which doctors would probably prefer to label as 'Annoying Patients').

Salvador Dali Version of Normal

The other night at work the teachers inquired, with some concern, about my 'surgery'. (Which was not surgery but it's too hard qualify all the exceptions that make up my healthcare and it's just easier to go with surgery.) They'd been swapping health information and stories and I got a little too comfortable with them.

"How did your surgery go?"

"They found a growth in my stomach and removed it," I said, shoving salad in my mouth as if I'd calmly noted it was raining outside. No biggie, right?

"Oh, my," said a teacher, hand covering her heart. The other teachers shook their heads.

I looked up and realized everyone was thinking cancer. Whoops. Minus 100 points on my communication skills.

"No, no it's okay. It's unlikely to be cancer. The problem was more that I had some complications."

"What happened?"

Oh shit. Shouldn't have said that. Now what do I say? Of course, I made it worse.

"I had an adrenal crisis the next day, which can be serious. Hard to live without a stress response."

That resulted in gasps of shock along with looks of utter horror and concern. These folks were so nice, they were about to drown me in sympathy. Even though I'm pretty sure they had never heard of adrenal glands.

"Don't worry. This is normal for me," I said, hastening to reassure them as I scraped the last of my food off my plate.

They just gaped at me, forks frozen in mid-air.

I backpeddled trying to fix the mess. "So ummm, how far along are you in menopause again?"

I honestly was surprised (and touched) at their concern, which just highlighted how strange my life is.

I'm so warped I think this medical stuff is normal.

Have you had a Dali moment?

PS: Seem to be finally eating. In very large quantities. Still having flank/back/stomach pain/burning and fatigue, but I packed in some serious calories at least!

The Usual

I have lost another pound. I'm eating. I swear. There was even an actual sensation of hunger at one point.

Some burning in the back and abdomen--with strong intensity at times.

(Side note:Ran into another patient who experiences adrenal burning as opposed to pain. The ER kept asking me about pain and I kept telling them "It's not pain, I'm just on fire inside." The (completely impossible) mental picture I had? Was one in which the endoscopy had poked through my stomach and the acid was melting my innards. That's a solid 3 on my pain scale. I don't know, burning is just hot, it doesn't register as true pain for me. For comparison, steroid withdrawal muscle pain is a 7.)

Fatigue level was steady at 'I'd rather be in bed' for most of the day. Perked up a bit at night and my appetite came for a visit.

Spent the day dealing with extended family stupidity and it wore on me. If you think I'm crazy...you just haven't met the rest of my family. Like the hubby says, "Your family makes me look good." To which I always say "Your family makes me look good." And it's true.

Anyway, went to work and sat on the floor with a kid who can't walk, which was a low key gig for me. The other teachers were running around like chickens with their heads cut off. Glad I got a pass, but I decided tutoring is the more adrenal friendly gig and maybe I should take on another student.

I'm trucking along despite it all. Still have no idea what's going to happen next although I'm rooting for turning the corner.

Mixed Bag

Well, Monday was not better. It was worse. At one point I began to fear I was heading for real trouble. I must have done too much on Sunday? I just really felt the need to keep living my life and do things that nourish me as a person as opposed to always being benched by my health.

So I went out to lunch with a friend and caught up. It went pretty well. I felt like I was safe to drive, which is not always the case. I was able to keep up with the conversation even though I lost track of my point a lot.

I thought, 'Wow, I'm getting better.'

Then I had a terrible time getting up. Did not sleep well. Had some muscle cramping, which is really weird as I've not had intermittent steroid withdrawal before. If that's what this is.

Finally felt up to making cookies with the toddler. Filled the CD player with Christmas music and we baked (well she baked and alternately danced). There are now 3 dozen cookies in the freezer ready for the holidays in case I don't feel well enough to cook on the exact date.

After that, I was wiped, but I had promised myself I would make a crock pot meal, trying to stem the tide on the take out. My palate has changed enough with low carb that fast food actually tastes like junk to me now. I can not face anymore bunless burgers from various junk franchises. It tastes like crap. (Exception to the rule: I still like french fries.)

I started shaking a bit and getting some back and abdominal pain. Tired enough to struggle with all the various recipe steps. I did eat. but it didn't help. Felt like my bp was low, but I couldn't check it, and hesitated to add salt as feeling low is not always the same as being low. The remainder of the day was conducted from the couch.

On the upside, I was able to make myself eat all three meals, the first time since 11/2. The hubby said I was much more talkative than I've been, and put in topic requests for football and industrial strength leaf blowers.

Perhaps that was why everything he said just bounced off my ears the other day? Because those are not things that interest me. Nor are they anywhere near my area of expertise. If they are your forte, let me know, I'll hook you up with your new bff.

The mixed bag of symptoms means I won't updose yet. It has to be all adrenal all the time before I'll take steroids, but the uncertainty gnaws at me. I never know if I'm doing the right thing. I never know what will happen to my body or what medicine will do to me next.

I remind myself I have steroids. Heck, the ER even gave me a prescription for Zofran so I don't even have to vomit! I don't have to end up in the ER again, but I still freak when there's weirdness. The crisis shook me more than I realized.

Some anger showed up yesterday as well. Anger that this was all preventable. None of this had to happen to me. This suppression never had to be the most severe and dangerous one I've ever had (even if the taper was the gentlest).

What my body is doing is not outside the realm of medical literature. It's not like no one else ever had this problem. It's not like this has never happened to me before either.

All it would take to save me so much pain and grief is one well read physician. Just one.

Withdrawal or Insufficiency

It has been suggested to me that I'm going through steroid withdrawal right now and not adrenal insufficiency. That could very well be the case. I just don't have any of the muscle pain I attribute to withdrawal, but that doesn't mean it's not withdrawal.

If it's withdrawal, I should progressively feel better this week.

The only thing...I re-read my last several months of posts and wow. I've really been having issues with my appetite and energy. I always tell myself I'm doing great and then whine on here. When I read the whining, I can see how hard I've been pushing. I don't think it should be this hard.

I drove yesterday and was okay without extra steroids. Ate breakfast and lunch, but no dinner. Mostly felt okay. A little wiped and kind of cranky, but there's hope that today will be better.

Another Adrenal Crisis Patient with High BP

November must be 'have an adrenal crisis' month. And not only have an adrenal crisis but do it with high blood pressure.

Go read the story. It's almost word-for-word what I experienced.

It's nice that the ERs thus far seem to be figuring it out pretty well, but I need an endo who understands it too.

Why is that so hard?

Question of the Day

Today's question is: Do I take steroids so I can drive competently or try to do without?

After 12 hours of sleep, I feel okay, but I've only been up for ten minutes. How I feel now does not mean I won't hit the wall later.

Also, I may have overstated the bit about stuffing my face as I've lost another pound.

Apparently a granola bar, a sausage biscuit, a bit of salad and a low carb hot chocolate aren't enough to keep it together.

I'm going to try a lower carb smoothie this morning. With some Fage greek yogurt and cream to boost calories. And I'm supposed to do Mediterranean for lunch with a friend (hence the driving issue.)

I absolutely do not mind the weight loss, it's the vicious sugar lows I'm trying to avoid.

This Post Makes No Sense, Read at Your Own Risk

I am off steroids as of today. The today and tomorrow in the previous post are a day off. I try to keep the time line straight as I write so things don't get confused but sometimes I mess it up. Sorry. (Although I hope your life is not hinging on my ability to keep the day things happen vs. the day things post straight.)

So...it's the usual woozy and about two blinks from falling asleep where I sit. We will see how I do without steroids. I think I actually weaned a few days early. Unfortunately, my sense of time has been weird since the ER. Half the time I'm lost in a fog.

For instance, the hubby has given up trying to talk to me today. I can register he said something but not follow him. All he gets from me is "What?" He repeats himself and I'm still "What?" So now he's outside communing with the leaf blower until my brain comes back online.

If I need to updose, I will.

I did want to update though before I crawl into bed for what I hope will be a restorative nap...

Saw the pcp. Found out my bp unit is broken, which is reassuring since it was starting to give 140/100 readings. The toddler drop kicked it the other day which likely broke it.

My usual whitecoat hypertension couldn't muster much of a response today. I attribute that to the lack of steroids.

I've lost six pounds since last week. Vomiting with a side of adrenal appetite suppression is actually a pretty effective diet. Too bad it's not more fun.

Appetite continues to be a problem. I work very hard to eat but many times breakfast is two hardboiled eggs and lunch is a piece of cheese that I force myself to eat. By dinner I usually have some appetite, but not enough to make up the missing calories.

It's not nausea, it's this weird anti-hunger. I want nothing to do with food. Nothing. I just can't eat sometimes and then I get stuck in a cycle of low blood sugar making me feel worse. I also fail to meal plan because I just don't care about food, which means we've been living on cheap takeout lately.

I'm thrilled to lose weight, believe me, especially after a year of nothing, but what the loss of appetite signifies is worrisome. It should even out though, with time, right?

And today, I went from the pcp directly to the nearest restaurant and ate heartily aka kind of stuffed my face. So that was good.

My PCP, well I don't want to jinx it, so just think of good things you might say about a doctor and yeah, that.

I gave them this fantastic paper I found on Exogenous Cushing's and subsequent insufficiency. I read it and it was like someone was writing about my life. I kept thinking 'that's me, that's exactly what happens.' I wish this paper had been around in the 90s, it would have saved me so much grief.

The PCP was happy to have the paper. I was quite nervous over how to give it to them without seeming like a know-it-all patient or a medical paper pimp, but they were glad to read it.

My plan from here,which I shared with the PCP, is to just have the endo put in some standing orders for am cortisol draws and we are going to be updosing for illness/surgery in the future. If I keep going downhill, I need something to test the HPA axis which the ACTH challenge does not do.

Oh and I lost one of my jobs from being sick. Which sucks. Although I was struggling with meet all my commitments anyway and likely would've had to let something go. My hope is to focus more on the writing which is actually kind of panning out, I just need to get more books out asap.

Okay I tried to make sense. Sorry if some of the paragraphs don't work. At least there aren't a bunch of typos, right?

Steroid Withdrawal, Muscle Pain and Notes on an Adrenal Crisis

My muscles are spasming enough that when I raised my hands to put mousse in my hair the other day, my pec spasmed until it sprained itself.

Yes, I am now beating myself up.

Then there are the sustained contractions in my feet, calves,forearms and diaphragm. If I hadn't had them before, I would be terrified. It feels like you're becoming a statue, trying to breathe through stone.

Thank God for Advil.

Made it down to 10mg. It's been a little dodgy. The hubby startled me and my body immediately became short of breath. It was weird.

Tomorrow, down to 5mg. Then we see how that goes. If it goes well, I'm stopping. Can not wait get off this poison.

On the adrenal crisis front, I corresponded with an Addison's patient whose BP skyrockets during a crisis. I am beginning to suspect patients must go low just before they die/start to die. I bet there's a significant adrenaline response initially.

Diagnosis of a Troll

So I had a troll stop by. One with weak reading comprehension.

They diagnosed me with depression.

It's not like they commented on one of my more emo posts either. Or one of the over-the-top chatty ones, fueled by high dose steroids. No, they picked the post where I discussed the pros and cons of prednisone and hydrocrotisone.

Because nothing says depression like debating the merits of various medications?

I have to say, as crazy as my medical interactions have been, I've never once been diagnosed with depression. Nor do I think I'm depressed. Frustration and trying to find solutions/answers does not constitute depression. Fighting for better health is not depression. Freaking out when weird stuff happens to me is also not depression. I defy anyone to watch their body go apesh*t while doctors refuse to help and not panic.

If I thought Prozac or Xanax or hell, even pot would cure the asthma, the low am cortisols, the weakness, the vomiting, diarrhea and abdominal pain and the zig-zagging blood pressure, I would be on it.

The troll also scolded me to stop getting medical information from the internet. Dumb patients don't know what's good for them. Close your eyes, cover your ears and open wide for the damn Prozac already.

Listen, honey, pull your head out of your ass and hear this...

First, it's not like I'm getting my medical advice from Perez Hilton or those medbloggers who think patients exist solely to be punchlines on their blogs. The fact you can't recognize that is sad.

Second, I have taken college level biochemistry, anatomy & physiology, pathophysiology. An A in all courses (being sick with something no one understands is very motivating).

Third, I sat for a limited medical license from the State Medical Board, which tested me on those basics. I aced it.

See back when this first happened to me, we didn't have the internet like we do today. I had to go back to school and actually learn everything firsthand.

Thank God I did because I went right from my last class into another HPA axis suppression. (That, troll, is the "good reason" I'm not a doctor. If I had ever had the health to support such a rigorous career, I would've done it.)

Tell me, troll, if I'm depressed and dumb, how is it I'm the only one ever getting the diagnosis right?

Of course, I don't know everything. I know that, duh. The problem is medicine thinks it does when it doesn't. At least I do know enough to save myself. Can't say the same for medicine.

Medicine is profoundly flawed on multiple levels. Just the fact I had to go through 2 years of schooling in order to successfully plead for a simple am cortisol draw is evidence of that.

Someday you will get sick. Someday medicine will do to you what it's done to me. Someday you'll understand and you will remember your comment with shame.

It is just a matter of time.

ER Doc

The ER doc and I had the following conversation last week:

Doc: "You should have taken steroids prior to the surgery."

Me: "My endo doesn't support that. They say I'm normal and don't need steroids."

Doc: "Not according to all the medical literature I've read."

Me: "I know, I've read it too."

What do you do when your endo follows one school of thought while your body follows another? I bring stuff up. I try to challenge thinking, but it doesn't go anywhere. We're stuck in this pattern of 'you're fine, but here are some steroids.' What is the end game of this pattern? Where's the plan?

My body is not going to dissolve into the ether. It's not going to stop annoying the sh*t out of me and the endo anytime soon. So, I don't know. Maybe we need a new approach?

Taper to date is as follows:

Monday-30mg HC split dose but all before noon (helped a lot, but felt like a little too much)

Tuesday-20mg HC no split

Wednesday-Holding at 20mg, no split.

Thursday-Down to 15mg, no split.

Sunday-Aiming for 10mg, no split.

Hoping to be steroid free by the end of next week.

Sooooo tired.

Hitting the Books: Various papers on Adrenal Insufficiency

Trying to understand and slowly beginning to accept I probably did have some kind of adrenal weirdness. I still can't call it a crisis. A crisis is when you pass out and end up in ICU, right? Although I have found some references to people who were 'walking, talking' crises and I've walked around with an am cortisol of 1 so I guess anything is possible.

The quote below is the point I was trying to make about the high blood pressure. Given time, I would have crashed in a seriously bad way.

"Exhaustion and ‘hitting the wall’ Addisonians tend to rely on stored adrenaline to get them through events which are more stressful or physically demanding than usual, to compensate for the fact that our bodies do not produce the boost in cortisol levels that a healthy person could draw on. Then, when the adrenaline rush finishes, we ‘hit the wall’." (Source)

And there's this that speaks to the lack of hypotension...

"In contrast, patients previously maintained on chronic glucocorticoid therapy may not exhibit dehydration or hypotension until they are in a preterminal state, since mineralcorticoid secretion is usually preserved." Page 125 Harrison's Endocrinology

How an adrenal crisis might be different in Secondary Adrenal Insufficiency/HPA Axis Suppression.

“The hyperpigmentation of skin and mucosas that is typical of Addison's disease is not present [in Secondary Adrenal Insufficiency, suppresion of the HPA axis], since pituitary secretion of ACTH is inhibited.1,14,28 Some patients may exhibit hypoglycemia. Hyponatremia and hyperkalemia are uncommon because ACTH suppression has a minimal effect on aldosterone secretion.11,29 In severe cases, an acute adrenal crisis may occur (vomiting, diarrhea, fever or hypothermia, acute dehydration, hypotension, hypoglycemia, shock and coma), which is a life-threatening situation.”(Excerpt of Withdrawal from glucocorticosteroid therapy: Clinical practice recommendations from Jornal de Pediatria.)

This makes me wonder what meds were used during anesthesia...

"Impairment of the HPA axis — There are circumstances in which cortisol availability can not be increased sufficiently to meet demand. As an example, drugs like ketoconazole, phenytoin, and etomidate may impair cortisol synthesis [11,19,20]. An observational study of 62 patients found that the use of etomidate for intubation was associated with increased likelihood of having a poor response (≤9 mcg/dL) to ACTH stimulation 24 hours later (odds ratio 12, 95% CI 3-50) [21]." (Source: Up-to-Date.)

Is this what I'm dealing with? Functional Adrenal Insufficiency? Relative Adrenal Insufficiency? Isn't that like adrenal fatigue, which no doctor believes in?

"Subnormal corticosteroid production during critical illness in the absence of structural defects in the hypothalamic-pituitary-adrenal axis has been termed "functional adrenal insufficiency" or "relative adrenal insufficiency." There is currently no consensus on the diagnostic criteria for this entity" (Source: Up-to-Date.)

WTF is Partial Secondary Adrenal Insufficiency? Sounds like an apt description.

"However, occasional patients with partial secondary adrenal insufficiency, based on metyrapone or insulin tests, but with normal basal cortisol values, have had an inadequate clinical response to the stress of surgery or sepsis [20]. The overall clinical importance of these observations is not clear, because the prevalence of the scenario is not known." (Source: Up-to-Date.)

This one is a good tidbit on how there is no way to predict HPA suppression. Everyone thinks there is, but it's not so cut and dry.

Iatrogenic AI is caused by suppression of the HPA axis due to glucocorticoid therapy in pharmacological doses.22 Traditionally, it was believed that the degree of HPA suppression and adrenal atrophy in patients receiving exogenous glucocorticoids was related to the duration and dose of therapy.22,23 In patients taking any steroid dose for less than 3 weeks, suppression of the HPA axis is rarely clinically significant.23 Conversely, any patient who has received the equivalent of 15 mg/day of prednisolone for more than 3 weeks should be suspected of having HPA suppression.23 However, recent studies have found poor correlation between HPA axis function and the cumulative dose, the highest dose or the duration of therapy.24,25 Because of the considerable inter-individual variability in the degree and duration of adrenal suppression, it is difficult to accurately predict which patients will develop AI when glucocorticoid treatment is discontinued. (Source)

Some info that reiterates it’s hard to predict when suppression will occur and a yes on stress dosing for surgery. (Am I the only who laughed out loud at the sentence in italics? I think it should read understated. I'll believe it's overstated when physicians are anxiously lining up to check my cortisol levels as opposed to telling me no.)

“Some authors feel that glucocorticoid courses of less than 3 weeks
duration will not lead to HPA axis suppression, no matter what the steroid
dose, and therefore patients can be discontinued from steroid therapy
immediately and safely up to that point [18]. Others believe that at relatively
high doses, significant HPA suppression can occur after as little as 5 days,
but that at physiologic doses, suppression is unlikely to occur in less than
1 month [48].

Despite efforts to understand the effects of long-term and high-dose
steroid treatment on the HPA axis, clinicians remain unable to predict
exactly which patients will have HPA suppression [49]. The actual risk of
clinically significant adrenal insufficiency in patients who have been on long term
glucocorticoid therapy, however, may be somewhat overstated.

A double-blind study of patients on long-term supraphysiologic glucocorticoid
therapy with secondary adrenal suppression who underwent moderate to
major surgical procedures found that those patients who underwent surgery
on their usual dose of corticosteroids had no more complications than those
given the traditional stress-dose steroids during the perioperative period
[50].

Conversely, there certainly have been patients whose inability to mount
an appropriate stress response after long-term glucocorticoid therapy had
tragic results. Therefore caution on the side of short-term stress-dose
therapy still seems prudent.” (Excerpted from: Endocrinol Metab Clin N Am 34 (2005) 371–384. Exogenous Cushing’s Syndrome and Glucocorticoid Withdrawal.)

Addendums

1.Got the ER records in case they showed anything useful. They don't. Not even a cortisol test (which I kind of applaud the ER doc on that one. Random middle-of-the-night cortisol levels don't mean much).

There were some things you would see with dehydration, but nothing indicative of anything. Nothing I can point to and go 'here is where I had an adrenal crisis.'

However, OMG, my blood pressure was higher than I've ever seen it. It didn't start going down to 'doctor office high' until after the steroids,which is when most of the burning in my back and stomach resolved.

I do check my blood pressure. Not as much as when it was flipping out like a ping-pong ball high on meth and a case of Red Bull, but every so often I verify that yup, still fine. And it has been fine ever since I've been off steroids.

So it was crazy to see such high numbers.

Now that I'm on steroids? It's ping-ponging again. Up up up up and down down down.

Whackadoo. Like a game of pass out chicken.

I have a hypothesis that is poorly researched and barely understood because I'm too effing tired to think, but I soldier on anyway. My theory is I get an adrenaline surge when my body needs cortisol and can't find it. This jacks up the blood pressure and then it tanks when I start to run low on adrenaline.

There is some talk of how adrenal patients run on adrenaline during stress, but there's no universal experience of high bp...so maybe a crap theory. Although I know some patients with documented Addison's who've had some bp weirdness due to other medical issues causing problems.

2.I felt such shame disclosing the struggles I'm having as a recovering PK because seriously, how wimpy is that? However, I am not alone. There are studies and papers and a 12 step program. Somewhere out there is a respite resort even.

And my feelings about it all are all part of the PK experience. Also, I possibly may be ramping up for a rip roaring mid life crisis. Which, I hope not, but there's clearly a deep emotional transition/transformation going on.

I just want to cram it all back into the box, but it keeps leaking out. Not the best timing over here. Kinda busy on the too much/too little can't-live-with-it-or-without-it steroid front.

3.Stomach polyps are rare. Another 1% (or 7% or 12%, medicine can't make up its mind) outlier occurrence to be added to the list. I think my body is going for the complete set.

4. No one else has started puking and we all ate from the same sandwich for dinner. So it's not looking like I had a bug of any kind.

5.Still woozy and weak. This is a bad place to be.

Status Check

Steroid withdrawal has diminished a bit. I could sleep last night and didn't have to fight spasms in my diaphragm to breathe.

The asthma is still pretty active. I still need the rescue inhaler at night and have been taking Pulmicort twice a day to try to beat it back into submission. Crossing fingers...I think I'm winning. (Update: Last night...first night without needing albuterol. Yes!)

I am eating! And yes! I'm excited about it! Not a lot, but at regular intervals. I have lost weight though and hit a number on the scale I haven't seen in a year (finally, a diet that works!).

My adrenal glands aren't burning anymore. So they've either given up and died or are feeling better.

Still weak. Weaker and fuzzier than I should be. I am trying to get by on the smallest possible dose, so perhaps am not taking enough.

Dosing is tough.

Endo told me to do 40mg and reduce by 5 every 2-3 days. They also told me I didn't need steroids and that this would not suppress the HPA axis (I am doubtful since my HPA axis is the gold medalist valedictorian champion etc... of suppression).

So the mixed messages from the endo and my fear of suppression mean I've been doing strange things with the dose. I feel guilty for taking them since I supposedly don't need them, so I try to minimize the dose.

Actually, I've been so loopy, I couldn't tell you how much I've taken at any one time other than to say, it was never 40mg and I only split dose a few times. Because splitting makes suppression easier.

Over the weekend I took 15mg of hydrocortisone, but I don't know where I came from. Maybe down from 30mg? Obviously, if I can't even keep track of my dose, I must be doing it wrong.

Today I will boost the dose back up to 30 and see what happens. If it helps, I am thinking of doing an alternate day high-low dose. Because I don't want to suppress.

Hedging my adrenal bets.

Life Goes On

I was finally able to eat two meals in a row. Oh wow, food makes a difference. Wish my appetite would stop flaking.

I have steroid withdrawal symptoms except I'm taking steroids so what is that about? The solumedrol dose leaving my system? Was up most the night Friday with muscle cramps and asthma. And my neck is burning like a supernova right now, so I probably should stay off the 'puter until my muscles stop freaking out.

So while I've been falling apart, book related things set in motion weeks ago have been coming to fruition. It was such a bright spot, albeit kind of surreal, to find another 5 star reader review on my book, get notice of another positive review from a book blogger and see an interview I was inordinately excited about go live the day I got out of the ER.

Then...then I got a panel request form from a conference. This is small potatoes to the world at large, but huge on a personal level. I am really excited as this is something I have always wanted to do. I got to pitch panels and maybe I'll be on a few, telling people what I've learned.

No worries about me getting a big head. I had one reviewer email to tell me they hated my book--did I mention that? Thankfully, by then I'd already had multiple good reviews and some 5 star reader reviews. Not every book is for every person. I intensely disliked Breakfast with Buddha, for example, but a million other people made it a bestseller.

Plus I'm still not selling a ton of books, but it is selling. There are some doing worse and some doing better than me and my little novella, I'm kind of in the middle of the pack. Now I just need the energy to finish and publish the two projects I have pending.

Trying to Eat

Still limping along. Steroids are making all the difference, but my appetite is missing yet. Which means low blood sugar. Which just makes things worse. I need to eat.

So once I finally took enough steroids to function (I keep trying to get by with a small dose, it's so not flying), I took my wheezing toddler into the kitchen for some experimental blender food. Trying to make something I would be willing to eat.

We came up with pumpkin smoothies. Low carb, but with some carbs from yogurt to boost my blood sugar.

It was really good. Even the toddler liked it and she is impossible to please. The recipe is here and even though I'm low carb, the smoothie is very adaptable to whatever constitutes healthy food in your book.

Comedic Relief

1. The toddler snuck the scrub pants I wore home from the endoscopy into her bed. Ewwww! They are now in the garbage.

2. She appropriated the (unused) barf bag from the ER, filled it with water and ran around the house muttering about how it was perfect for her 'museum collection'.

3.We all wanted to go to bed, but couldn't because the toddler was still up. Instead of staying in bed, she sat in a laundry basket giggling maniacally. She's been sick too and needed the albuterol which always winds her up.

4.I am pretty sure, with all the broken capillaries and bruising, that I am the poster girl for what zombies consider ugly. Just in time for our 16th wedding anniversary.

I took more steroids and feel much better. Well enough to eat. You would think 125 mg of solumedrol would last longer, but no, not so much. I thought I would be peppier than this, instead I drifted through life like Lurch until I got a clue and took some 'roids. Up until that point? I wasn't sure I would make it.

Also? The asthma laughs and spits in the face of solumedrol. It's getting lost in the adrenal drama, but the asthma is mad as hell. This seems to be a reaction to anesthesia. I wheezed enough to get a chest x-ray at the ER, but no neb treatments. I almost asked, but figured I was breathing pretty well and pulse ox was good, even if the lungs sounded like fizzy pop. Besides, I have a neb at home. No need to pay a grand for what I can do for myself.

The endo thinks I'm nuts, but also atypical yet denies everything while also giving me steroids. (I think the technical term for that is mind f*ck.) I think I'm pretty typical especially when I talk to other patients. Know what is really typical? The gap between endos' care and their patient's experiences.

The high bp continues to be a confounding factor. My perception, as the hostage of this body, is the bp spikes trying to cope with the stress. My body is fighting. If it hadn't fought that night or had lost, I would've passed out. Alone.

Next time I'll bring the bp unit so they can see the lows. I've decided this adrenal shiznit is much more nuanced than anyone realizes.

Maybe an Adrenal Crisis

I'm tired and I have a headache with the shakes so this may not be the most coherent post ever written.

I went to the ER. Primarily because the vomiting precluded oral steroids and I needed help working around that. And there was the possibility of an endoscopy complication. Also, I was shaking until my teeth chattered, short of breath and my stomach was burning hot.

The doctor was great, really great. I would have liked to have had the IV steroids a little faster as studies show delaying the dose is what leads to death in an acute adrenal crisis. But the ER was, overall, great.

It helped that I looked like sh*t. The endoscopy anesthesia had beaten me up pretty good to begin with so I had the fat lip and some broken capillaries already. The vomiting then made my face bleed under the skin on a large scale. Natural zombie make-up. Today I have black eyes.

I went from Triage, barely able to keep my eyes open to winking at the triage nurse on my way out saying "Steroids" in response to her "You look so much better."

It's hard to say what happened. The thinking is it was an adrenal crisis or an almost crisis, but I was not text book. For one, my bp shot up way high. It had been too low all day and I drank pickle juice as I wasn't feeling great (but not so bad I thought I would end up in the ER! In fact, I felt optimistic about the next day being even better.).

I had no idea I was going to throw up. Did not feel sick at all. There was no warning. I went from 'tomorrow is going to be great, I'm on the road to recovery' to puking in the tub from my position on the toilet. It was very fast. Very sudden.

I was terrified I would pass out and was desperate to reach the hubby. He didn't check his phone, the stinker. Neither did his friends or the skating rink he was at. My neighbors were all asleep already. So I packed a bag and tried to wait for the hubby figuring 911 was always an option.

They started me with fluids, which helped give me control over whether my eyes stayed open or not, but didn't touch the abdominal pain and then I started wilting again. The steroids are what finally eliminated the pain and 'woke' me up--that is, I think, probably the most credible evidence that it was adrenal.

My lab work was also normal, but I gather this is not unheard of from other adrenal patients.

And that's it. I'm going back to bed. I probably forgot to include something important.

Complications

Umm...so I started puking???? In the tub because I needed to be on the toilet.

And I can't get a hold of my husband.

So I'm home alone with a toddler who I think is sleeping.

I have no idea what is going on but I'm in trouble and I don't know what to do.

They Know Jack About Adrenals

Sometimes people contact me looking for adrenal advice and I'm happy to share what little I know. One nugget I find myself passing on rather regularly is that your number one job is to stay out of the ER and away from doctors. It is not getting off the steroids. No, day-to-day the most important thing is to never need emergency care because you can not count on getting knowledgeable care.

So no tapering during high risk events like traveling or going to a party or right before your period. You taper when it is safe to taper, i.e. when you can stay home and do nothing. And you always carry steroids with you and don't hesitate to take them. Better to have too much for a day then be at the mercy of a hospital that may or may not know what to do with you.

They don't know jack about adrenals. The ignorance is pervasive.

Case in point, whenever the risk of stomach/bowel/esophageal puncture was brought up during endoscopy prep, I told them, "Make sure you give me steroids at that point."

To which the response has been confuzzled silence.

Yesterday, one doctor clearly had never heard the phrase HPA axis before. Didn't know, didn't care. In fact, they were kind of irritated because I was ruining their carefully prepared spiel on the risks of the procedure. Frankly, I wanted to smack them. It's fine not to know, but to not care that you don't know? Inexcusable.

Thank goodness for the very thorough anesthesiologist who printed out my history and read it. I'm not sure they knew what HPA axis meant, but the phrase 'adrenal insufficiency' in my diagnosis list made a huge difference.

Score for getting an endo on board in the same medical system where I seek most of my care.

Just like in real estate, location matters in medicine.

So that bought me an offer of steroids right there, right then. Which I refused. I had steroids at home. I wasn't in fear of an adrenal crisis (except for if they punctured my bowels in which case all bets would be off and gimme steroids stat) it's just that my system performance is not yet optimal. It was immensely reassuring though, to work with a physician who had some inkling of what this adrenal crapola was and how serious it could be.

I'm still shocked by how little doctors know about adrenals.

Today I took steroids in the hopes of minimizing the effects of yesterday. I don't want to take steroids at all, but I remember how long the recovery took after the last endoscopy. Besides the asthma has been at Defcon 5 since yesterday. I guess my lungs didn't like the anesthesia.

My Very Own Scrubs

Round two of endoscopy vs. PoP was today. Recovery from the drugs seems easier, maybe because I didn't get a bunch of extra doses?

However, I have a fat lip leading the hubby to call me Angelina Jolie and I peed my pants because they let me wear them. So I had to go commando in ill-fitting scrubs to get home. Hubby wants to know what kind of doctor I'm seeing that sends me home without underwear.

The pain from the air that was pumped was beyond excruciating for some reason. It hurt so bad I couldn't take deep breaths and was crying on the way home. Thankfully, the air is dissipating.

There is nothing in the ducts and the pancreas looks good. So scope is negative, OB has been checked on the off chance it's an ovary gone bad, and there's really nothing else to check. My body just hurts for no good reason. At least now when it feels like a rupturing appendix, I know there's no pathology and I can safely watch 2am infomercials until it subsides.

I did have a polyp which as been removed. My body grows things like a frustrated gardener; skin tags, moles, cafe au lait marks, small tumors in each lung, thyroid nodules and now polyps.

They said I may need a lower GI scope and more scopes in general, which is horrifying to consider. I plan to avoid them as much as possible.