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!

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.

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.

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.

Oh Happy Day

I woke up this morning and, despite sleeping for crap, I felt fine. I didn't want to crawl into a hole and hibernate. I was excited to start the day and felt like there was energy in my body for once.

In fact, I got up, got the toddler, snuggled with her for a minute and then did an elliptical workout while she watched PBS for the first time in over a month. Then I took the toddler out for a ride on her tricycle, we played in the water and we planted some seeds. That's a lot of activity for me. Just last week the elliptical would've been IT.

Yesterday I walked a rough mile. Rough because I had some asthma issues; air wasn't coming back out and I had to resist the urge to punch myself in the gut to force it out. But I still did it.

And it didn't ruin today for me.

And I haven't had any prednisone in 48 hours.

So maybe this is behind me. I hope, I hope, I freaking HOPE.

Next up, weaning off the Pulmicort (assuming the asthma is stable) and figuring out what to do about my stupid uterus.

Kablooey

The uterus is exploding again. Which is kind of pathetic considering I'm on the freaking pill. The OB called me about something or other and when I mentioned the uterus' lack of cooperation, they cheerfully informed me this could take 3 months to fix.

But I think they think I'm just spotting, which, ummm no. Not spotting. PCOS never does things by halves. I'm either completely annovulatory or ...ummm not (to avoid graphic analogies that no one needs to have dancing in their brains, which, you're welcome).

I'm currently trying to ignore it and considering a sex change operation. Not only would my earning power increase thanks to a penis, I would no longer have a uterus to torture me.

Unfortunately, the hubby isn't on board with me getting my very own penis. Even though I told him he could become a woman. It's like Freaky Friday, but with adults who go to Thailand for a few weeks. What's not to like? Apparently, a lot I've been informed.

So anyway, as for the adrenal glands...

This prednisone taper is going much better. Yesterday was my first day with no prednisone whatsoever. I did hit the wall and experience a minor asthma flare. I thought that was kind of interesting.

Adrenal glands make something like 5mg a day, on average. I was down to 2mg and was fine meaning I was at least making 3mg, if not more, on my own. So, I don't know. It's just, if they are working, why aren't they working working? How long does it take to figure out 2 freaking mg?

I have the laziest adrenal glands on earth.

It is annoying.

So, being stupid, I went to the grocery store with a toddler who wanted to walk instead of ride in the cart. By the time I finished at the store, loaded the car, negotiated with my terrorist toddler (and lost, repeatedly), got home, set the toddler up with lunch, let the dogs out, unloaded the van, put the metric ton of groceries away, let the dogs back in, and put the toddler down for a nap, I was DONE. There was nothing left. Nothing.

Then that special road rash feeling hit my lungs.

But I didn't collapse and I didn't have to take a nap, which is progress. However, I did just sit on my ass the rest of the day.

And that's that.

5,4,3,0

Hello. I'm busy cleaning and playing catch-up in other areas of my life that don't involve blogging. I've finally adjusted to 4mg of prednisone and have been taking full advantage of that fact.

Just in time to step down to 3.

Blech.

Cheers. I'll be back ranting and raving once 3mg flattens me like a pancake.

Self Care for Steroid Withdrawal Symptoms or Adrenal Suppression

In trolling the internet for information, I haven't seen a lot of tips, tricks or techniques for coping with the aftermath of prednisone. So I thought I would share my steroid withdrawal regimen because I do think I would have ended up back in the ER without it. The endocrinologist I'm currently working with felt my self care was a Good Idea, so I hope that this info will offer some enduring value.

Of course, what works for me, may not for you. So use good judgment. Also, ideally, you aren't cowboying it like I am and actually have a physician taking good care of you.

It took me two weeks, 4 physicians, and an ER visit to get anywhere. So you may have to be kind of pushy if you think you have either steroid withdrawal or adrenal suppression.

1.Sugar, sugar everywhere. Corticosteroids can mess with blood sugar and cause it to crash. To compensate, I bought some Smarties candies and stashed them all over the place; my desk, my purse, at home, in the car etc... If I get hit with low blood sugar, I eat one roll and wait a few minutes, if I still feel bad, I eat another one and repeat as necessary.

Why Smarties? They are inexpensive, not too many calories, they store well and, because they are simple sugar, they are absorbed pretty quickly into the bloodstream.

If Smarties aren't handy, aim for junk food--stuff like full sugar soda, juice, candy bars etc...A healthier option that could be considered would be dried fruit or a trail mix of some kind. Just don't eat a lot. You don't need a ton of sugar, that will make things worse. Just a little bit.

I always follow the sugar with some protein to help prevent another sugar crash. There are usually almonds, peanuts or string cheese in my purse.

I am never without sugar and a protein based snack.

2.I ate on a regular basis whether I wanted to or not. Food helps stabilize blood sugar. Between the stomach flu and the steroid withdrawal, I had very little appetite, but I still ate. At least three meals a day (well except for when the flu was at its peak). Sometimes I even worked up enough interest to snack.

No special suggestions on what to eat. Experts say to aim for low glycemic meals/low carb, but I have not had good luck with that. I found I needed a lot more carbs than usual to prevent low blood sugar, but this probably varies from person to person. Do what works for you.

However, I would suggest to always be sure to include protein in every meal because it helps keep blood sugar from going nutso. Carbs get blood sugar up when its low, while protein helps keep blood sugar stable. You need both.

3.I napped. A lot.

4.I rested even though I didn't want to and didn't do much. I had no choice--the fatigue was overwhelming. So I guess my advice is don't plan on doing anything but sitting on your butt alternated with some heavy napping.

5.Salted my food especially if I was dizzy or light headed. I took this to mean that my blood pressure was low (I did have some 90/60 and 90/50 readings) and salt will help raise blood pressure. In between meals, good sources of salt are olives and pickles. Hot dogs are pretty high sodium as well and contain as much as 35-45% of the RDA for salt.

6.Took potassium, magnesium, calcium and B-complex vitamins twice a day. Potassium, magnesium and calcium helped with the muscle cramps. The B-complex was supposed to help with the energy, but I'm not sure it did. Still, B vitamins are good for the adrenal glands and neon pee is always fun. Make sure it has a good amount of Pantothenic Acid in it.

Note: This cocktail works well for me BUT coming off steroids can actually cause problems with electrolyte levels from what I understand as a humble patient. So if you take any of these supplements and feel worse, stop taking them.

Again, ideally, you have a doctor who is providing care and you don't need the internet's advice.

7.For pain, I took 800mg Advil, waited an hour or so and took 2 Tylenol. At night I used Tylenol PM. There were times when this was not enough to relieve the pain, but I just waited it out and the worst of it passed. Eventually. The stomach flu made everything worse and really aggravated the muscle pain for me, so your mileage may vary.

Also, it would probably be a good idea to run this past a doctor before trying it. It is safe for me, but it might not be safe for you.

8. I also used Benadryl to combat the inflammation. This actually was pretty helpful. I would not combine this with Tylenol PM at night as my understanding is Tylenol PM uses the same ingredient as Benadryl?

Might be good to check with a doctor or pharmacist on this as well. What I did was, on the nights that I wanted to take Benadryl, I used plain old regular Tylenol for pain relief. Or Advil.

9. I increased asthma meds to deal with the asthma flare induced by the steroid withdrawal. Mainly the Pulmicort (or Flovent if that's what you have), but the rescue inhaler saw some heavy use too. And the nebulizer was on the table at one point as an option.

In reality though, the Benadryl was the most helpful thing I did to combat the asthma. The inflammation was fairly significant in my case.

10. I did not exercise. I couldn't. I don't know how anyone would have energy to, but here's why I don't recommend it: The muscles are too prone to spasm (assuming you have spasms with your version of steroid withdrawal/adrenal suppression) which makes me believe an injury would be really easy. I know that I was inordinately sore after trying to work out even while still on prednisone, which was deterrent enough for me.

So I would not worry about getting physical while in the throes of steroid withdrawal. If you must, keep it really simple, low impact and don't go so far from home that, if you crash, you can't find your way back.

11. Keep looking for a doctor who will take your symptoms seriously. Once you do find that doctor, obtain ALL copies of any test results related to your condition and keep them for future reference.

In my case, the last time I had adrenal suppression was over 10 years ago and, while some doctors could find the test results in the computer, others said they weren't available due to age. So keep your records--you're going to need to present proof if this comes up again in the future.

12. Insist on an consult with endocrinology if you go to the ER. Or have your family do it on your behalf if you're incapacitated. Alert the ER that you think you're going through steroid withdrawal or perhaps have suppressed adrenal glands. Be sure you know your prednisone dose and its history, they'll need that.

If you are sick enough to go to the ER, don't leave until an endocrinologist has been consulted about your case--that should be the one specialty that will know what to do (and even then it can be a crapshoot). This is especially important if the ER is showing no signs of sending you home with low dose steroids to support your struggling adrenal glands.