JINX!!!!

Shhhhh.

Be vewy vewy quiet.

I think I turned the corner.

I only had to use the inhaler once last night instead of the 3-4 times it's been used the last several nights.

Only once.

That is GOOD.

I have less gunk.

That is really GOOD.

That'll teach me to whine dire health predicitons on the internet.

But shhhhhh. Don't tell the universe. That bitch hates me.

Also, it's not like the toddler slept.

The truth about parenting?

For realz?

Kids only sleep when you don't want them to. They never sleep when you need them to. Never.

You've been warned.

So the lack of sleep on top of the lack of sleep sucked zombie azz.

Two days of bday parties (hers and the neighbor boy) with no nap and copious amounts of cake turns out to negatively impact sleep in the under 5 set.

Who knew?

You know what I want to do now that I feel so much better? I want to have a mummy musical parade for the neighborhood kids. I have a not scary mummy story I can read for the littles who don't quite know what a mummy is yet. Excess toilet paper to make mummy wrappings. Everyone would bring their own musical instrument and we would make a racket. I think it would be fun. The toddler would love it.

But I need to taper down to 4mg on Thursday. Which means I have to sit on my hands because I will (most likely) have the energy of a comatose sloth.

I am grateful for prednisone, but I also hate it.

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.

Proof of Intelligence = Public Couch Molestation

Note: This first part has nothing to do with my health, although I do think it relates to high blood pressure prevention.

I wasn't really sold on the black leather couch we bought a few months ago. Black furniture is not my thing. But it was on sale and so so so soft. We literally sat on the showroom model and just ran our hands over it for like, a half hour as our eyes rolled back in our heads from tactile ecstasy.

Yes. My husband and I publicly molested a couch.

Awww. Our first threesome.

So we bought it. It's working out okay, but I feel much better about our choice today after visiting Sh*t My Kids Ruined. If you have kids, that site will quite possibly make you feel better about your furniture too.

Maybe.

Depends on how destructive your kids are. Mine isn't particularly wild and it doesn't matter because Sharpie markers don't come in white.

On the medical front, eh. Just tired out. Although, between naps*, I'm still able to be pretty active--lots of heavy duty cleaning as we have a long term house guest (and relative) coming in this weekend. They have a swanky rocket scientist internship at that agency that sends things into space. *proud*

I'm glad I made the executive decision to go to 2 mg. Tomorrow I'm going to skip the dose and start alternating for a few days. After that I think I'm done.

I would like to start walking the dogs soon, but I'm single parenting this week which is work out enough.


*Thank the Gods the toddler still naps otherwise this whole adrenal kamikaze mission would have really sucked ass.

Steroid Update

So I think I'm ready for the specialist for the toddler tomorrow. The milestones are written up. I have three questions with a few more to follow depending on the tests ordered--this is probably the shortest list of questions I've had. Ever.

I've got things all tightly compartmentalized. I don't know how I did it. I spent the weekend imagining some pretty awful worst case scenarios and crying, then, all of a sudden, it was over and I was calm.

Although my neck and spine are now screaming in agony. Gee, I wonder why?

Anyway, tomorrow is also supposed to be my first prednisone free day, which, ummm no. Not gonna happen. I'm striking out on my own a bit and going to taper down one more step to 2mg for a few days because I just cannot face dealing with zero energy and the toddler's medical issues at the same time.

I feel like I'm being a pretty bad patient. Making up my own prednisone taper and all. However, it's no different than me tapering down on the inhaled steroids. I know the inhaled meds aren't supposed to cause withdrawal symptoms or suppression as a general rule, but hello, here I am, the 1% outlier. Have we met?

So I do have some experience with this. I just never really realized I was doing my own tapers before and not killing myself.

That epiphany dawned this week. After years of ramping up the inhaled steroids during asthma flares, then down, and then back up again when my energy tanked--I finally connected the dots. Look everyone, I have a clue! Ooooo shiny!

Sometimes I am slow on the uptake.

I guess I should probably mention this to the endo at some point. Do you think the pulmo wants to know? I am confused about who cares about this.

I do think the adrenals are working again. The step down to 3 mg from 4mg was not quite the nightmare I anticipated. I had some days where I felt pretty good. I've been able to do pretty much everything I want. Yesterday I was doing pirouettes in our soon-to-be dining room.

Just dancing in an empty room, dredging up ballet lessons from the primordial soup of my college days. I can't remember the last time I spontaneously did anything physical. Just let my body go and do what it wanted to do. It was nice.

So this is a good sign yes?

Never mind my pirouettes suck. I am a fat middle aged woman with facial features courtesy of Cushing's, right? Not exactly So You Think You Can Dance material, you know?

But the toddler and I had fun.

I am cautiously optimistic that I will be able to get back to exercising next week. The dogs are going to be thrilled to be walking again and I can't wait either even though I know they are going to poop on every corner.

Maybe the worst is over, at least when it comes to prednisone.

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.

Fighting About the Other Woman

So I think we all hit our breaking point yesterday.

The hubby feels under-appreciated and overworked.

I feel under-appreciated and overworked.

There were tit-for-tat exchanges to establish who did more, as if that was relevant. Well I did this and you did nothing... But I did this and you did nothing...

Illness is not a good mistress.

The main thing is, I've asked the hubby to be home right now. To not go off gallivanting as is his wont because he's actually going to be out-of-town for a week soon--for business and pleasure. This leaves me at home as a single parent just when I'm due to stop prednisone for a second time. So I want him home to lean on so I can store up reserves for that week.

The hubby has lots of active hobbies that take him all over the place after work. I am a homebody who works at home, which results in an inequitable distribution of who does the most recalcitrant toddler wrangling (me).

Truthfully, I need to do a better job at getting out of the house and develop some external hobbies of my own, but I literally can't hack anything more than I'm doing right now. (But when I feel better? I'm totally going to check into a hotel for a weekend. By myself. So nyah-nyah.)

Anyway, it was ugly last night, but we are repairing the damage today. My frustration is, it is so damn difficult to explain how pervasive chronic illness is to someone who is never sick.

Just because I'm functioning doesn't mean I feel well and it doesn't mean I don't need help. What it means is that I'm simply used to a baseline of feeling like shit and pushing through--I've learned to function in spite of illness. Hubby hasn't built up a tolerance to illness, which is why he was pretty much babied through the stomach flu while I puked and toddler wrangled at the same time--all with malfunctioning adrenal glands.

Just because I did that, doesn't mean I good to go. I'm not. I need rest. I need to recoup. In fact, I probably need someone to tell me to go take a nap because I am much more likely to push and push and push against my limits.

Right now, the hubby just can't go off and have a good time and leave it all on my shoulders. When I'm better, fine, yes, he can go and play hockey until he loses all his teeth, I don't care, but until then, come home and help out.



Disclaimer: Hubby is NOT a slacker. No, no, no. He helps...when he's home. It's just that he's a social butterfly and doesn't stop to think before he says yes to five different things. I end up being the (unintentional) meanie who points out all the double booking and scheduling conflicts created by his acceptance of various invitations and saying 'hey, dude, what about your family?'

Time management and organization are just not his strengths and he would be the first to (grudgingly) admit that. It's an ongoing dynamic that extends back to when we started dating. Sometimes we're better about dealing with it than others. Last night was not one of the better moments.

Steroid Update

Went down to 4 mg of prednisone over the weekend.

Eh.

I dunno.

I really don't even want to blog about it because that involves admitting, I'm not feeling so hot.

I'm tired. Too tired to enjoy Mother's Day, which was nice and all, but I really just wanted a nap.

I don't want to be tired. I don't want to blog about being tired, but here I am.

It can be rough to transition to a lower dose of prednisone, I know. Plus, I've physically been through a lot the last few weeks--almost half of the 8lb weight loss was from bleeding alone and from there I went straight into stomach flu. I can see how my body might need some extra down time.

I think I'm going to whitewash everything as best I can and ignore the rest.

It's not as bad as it was, nowhere near.

But I wish it was better.

Before all this started I had a fitness goal; to get into good enough shape to climb sand dunes in the Upper Peninsula of Michigan this coming August. I was on track to do it, but now I don't think I'll make it. There's not enough time to both recover and go into hardcore training--not for my body, I'm sure there are people who could do it, but it's asking a bit much for me.

Today, I was out of breath teaching the toddler the Hokey Pokey. So I have a long, long, long way to go from here.

I will just be happy if all this is behind me for good by August.

Confessions of a Former Zombie

1. I have cold sores. I imagine this is a sign of how mal-adaptive my stress response has been. I've been taking Lysine which is a great nutritional therapy for cold sores. It gets rid of them pretty fast, at least in my experience. The only down side, the pills are huge.

2.I've lost 8 lbs in the last 2 weeks eating the following; pizza, Chipotle, chicken parmesan take out,bread, Sprite, Panera, Saltines by the dozen with butter etc....

What's my secret? Hell if I know. I was pretty shocked at the doctor's office when I saw the number on their scale.

I should've had some cheesecake. And ice cream. Maybe then I would've lost 15 lbs!

While my appetite has been reduced and I doubt I was over consuming even while eating junk food, it is usually physiologically impossible for me to eat that many carbs and lose weight. So I guess we can add surprise weight loss to the list of adrenal suppression symptoms.

I actually try not to lose weight when sick. It is not a healthy way to lose weight and my body eventually hits me with a huge appetite to compensate. So I was really trying to keep things even keel.

I am now back on the low carb wagon. There were just a few days there after the stomach flu where nothing appealed to me and I felt I needed to carb up to help my body recover and refuel from the flu.

3. I feel much better with the 5mg of prednisone. Really amazing. I was just dead before, a shuffling zombie. Now I have energy to feel human. The hubby was shocked at how peppy I was today. Neither of us had really dialed into how low functioning I'd been of late.

Today I did all of the following and did not take a nap!

-Mopped the kitchen and family room floors.

-Made banana flax muffins for and with the toddler.

-Made sugar free 'chocolate cake' muffins for myself.

-Put away the clean dishes, loaded the dirty ones. And will probably do it one more time before bed.

-Cooked dinner.

-Played with the toddler, including some vigorous dancing.

-Did two crafts with the toddler.

-Did the bills.

-Ironed the curtains for the family room.

-Worked.

-Helped the hubby with a presentation for his work.

-Threw out more food--unfortunately, the 5mg came a little late for some of the produce rotting away in the fridge.

This is all the stuff that was not happening before. Or rather, these would all be done on their own day, not sequentially and they would be followed by a nap. Today, the heavy lethargic feeling did not thread through my limbs like a psychic vampire. It didn't become too much work to lift an arm. I didn't have to stop and rest either.

So huge ginormous improvement. I hope this is the beginning of a long sustained upswing that lasts for a super long time. Forever would be good.

Member of the 1% Club Several Times Over --Where's My Prize?

Saw the primary doc. They are listening. I can see the wheels turning and I think I'm being taken seriously.

They asked if I'm exercising. Everyone asks this. Somehow my description of the fatigue tends not to compute the first time around.

I snorted at the question. "This is it. This appointment is ALL I will do today. From here it's all nap and resting. I haven't exercised in 2+ weeks."

Although I did end up taking the toddler out for a burger and to the playground. It about killed me, but I am committed to not sucking the life out of my daughter's childhood. Then I came home and threw out more food I am too tired to cook and the hubby brought home take out. Again. After which, I took a loooooong nap.

The other exchange, has me kind of kicking myself. Look, I have read and read and read EVERYTHING I can find on adrenal crap. Studies.Textbooks. Patient experiences.

EVERYTHING. I am the Queen of Adrenal Factoids at this point. Where do I audition for Jeopardy: The Patient Edition?

When the primary doc was confuzzled on why I would be prescribed prednisone as it doesn't contain the mineralocorticoids (hope I spelled that right), without thinking, I blurted out 'This is probably secondary adrenal insufficiency.' *face palm*

See, you don't need the mineralocorticoids if it's secondary adrenal insufficiency because, supposedly that capability is still intact in the adrenal glands. (On a side note, I also read that because of this it would be very very rare to have an acute adrenal crisis, but I would like to see more than one source on that before I take it as gospel.)

(And of course being a lowly stoopid patient, I could have all this wrong.)

I liked that they questioned it. That they were thinking primary adrenal insufficiency, because I do think I need some testing--whether it's damage from sustained prednisone use from the ages of 15 through 30, or the fact that the first time my adernals tanked it went undiagnosed or other high medical weirdness, something certainly seems off. The endo is planning to do that testing as far as I understand.

Anyway, I wanted to kick myself for saying anything at all. Fortunately, I don't think they took it the wrong way. They actually apologized for me having to go through all of this, which was a real kindness, I thought. I really appreciated it because my life has SUCKED lately--the bright spots have been hard to find. They also said I am that 1% who has issues with suppression.

As if I've never been an outlier before. Puhleeze. As far as outliers go, my health is a total 'slore'* I should get 1% tattooed somewhere. Maybe even trademark it as my brand. It seems to be my personal percentage.

The goal at this point is to get the primary doc all copies of all paperwork--past, present, future--related to the adrenal stuff. I am all for that. The more doctors who know this about me, the better. I am learning the painful lesson of having just ONE doctor know serious medical stuff about me. When they left town, I was left high and dry.

I won't make that mistake again.

*Slore = slut + whore. Courtesy of Olympic skater Johnny whatshisname who recently described Olympic gold medalist Evan whatshisname thusly. The word has since stuck in my brain.

There Is a God and Today I Am Not on Her Sh*t List

I heard back from the endocrinologist.

He got it.

He really got it.

My 10mg taper was too fast --which I had secretly worried about as well, but I trusted my pulmonologist. (Will have to re-evaluate that.)

Also, the self care I've been doing got his endorsement as being a Good Thing. So I will write up a post on that since there's not a ton of info out there for patients dealing with steroid withdrawal.

We are doing a 5mg x5 days, 4mg x5 days and 3mg x 5 days after which we'll stop and see how I feel.

I am being given prednisone and instructions to take it when I get sick to avoid 'crashing' in the future so I can stay out of ERs.

I need to get a medical ID tag (which I had one way back in 99 when this last happened, but I don't know where it went).

We'll do an adrenal challenge test (I think I have the terminology wrong on this so don't quote me) in 6 months.

I am also going to keep the appointment with the primary care doc today to be sure to document all this for the future. The more doctors who know this about my health, the better.

Too bad I went through 2 weeks of hell to get this far though.

Once again, as a patient, I pretty much did all the right things, but the doctors did not listen, did not act, did not Get It. How does that happen? Repeatedly?

Note to the ER docs of the world: This medical stupidity is precisely why I may not be willing to take steroids. Asthma is easier than this. Much easier because not only am I incapacitated physically, I am stuck on a merry-go-round, spinning in circles trying to find a competent doctor who knows how to deal with the side effects of prednisone.

It took 4 physicians to get proper care. I ASKED about steroid withdrawal in the ER and was ignored. I EXPLAINED my symptoms were similar to the last time I had adrenal suppression and was told they were in no way adrenal in origin. I ASKED for help and it was denied me time and again. EVERYONE had access to my previous history with adrenal suppression--the ER looked it up in front of me and it STILL did not compute. Frankly, I would rather not be able to breathe.

Hanging

First, here's a picture of the desk. Don't mind the window, the curtains haven't arrived yet and hubby taped up some white paper so the neighbors don't catch us in our 'undie-wear.' Also, I bought myself some flowers during a very ambitious trip to the grocery store. With the toddler even (which I only attempted because I knew I could strap her into the cart and wouldn't have to carry her).

I figured I had earned some floral therapy--although, as you can maybe tell, I know jack about actually arranging flowers.

But isn't the desk purty? I really love it and it is perfect for what I need; a place to work where I can still keep an eye on the toddler.

As for me and my stupid, moronic health. Things are in a holding pattern.

After not hearing back from the pulmonologist, I called one of the many endocrinologists I've seen of late to see if they could be motivated to do anything.

Turns out that was a good move on my part. Maybe.

Because when the pulmo finally did call me, I was told my symptoms could not possibly be adrenal in origin.

Through clenched teeth, I advised that this was exactly what I went through before when I had documented adrenal suppression. The data for which is readily available to the pulmo.

So they promptly handed me off to the primary care doc with the intent of getting endocrinology involved.

Which, big eye roll from me. Good thing I already called an endo and that I'm pretty sure I'm not dying. Although last night I was truly truly scared, being up most of the night with muscle cramps, back pain (my kidneys felt like they were on fire) and nausea that kept threatening to do something. I told the hubby if I actually threw up, I was going to the ER, but, thankfully, nothing happened.

I need to call the primary doc now because I know better than to think the pulmo's promised message is going to get anything moving with any speed. (If you're wondering why I'm not waiting for the endo I called earlier today... Well, at this point, whoever gets to me first wins. I am not playing around over here. I want to be sure I'm okay and I'm going to call every Doctor Tom, Dick and Harry until someone listens. It is becoming clear, I can't count on anyone so I'll play phone-a-doctor until I find a winner.)

You know what the real problem is? The doctor who saw me through this before, who knew me, moved out of state. So even though there are lab reports and, I assume, doctor's notes in my file about the adrenal suppression, it's not Good Enough because the current batch of doctors haven't seen me sick like this before.

Nor am I considered, apparently, a reliable or credible source of information as to what I am feeling in my own f*cking body. This after working with the pulmo for almost 5 years now who considers me to be a compliant and "medically informed" patient (their words). Seriously what the f*ck does it take?

My physiology has to prove itself all over again. I'm starting from scratch which is beyond ridiculous.

Medicine makes no f*cking sense. None. If I didn't have the previous history or if they didn't have my records, I could understand the Chinese fire drill. However, I purposely stayed in the system where all this happened before precisely to avoid a situation like this ; me saying 'something's wrong' and everyone ignoring me. I have been nattering on about the prednisone for the last two weeks; to primary care, to the ER, to the pulmo and...nothing.

Like I mentioned in a previous post about me being okay despite not going to the ER not being reflective of a good choice on my part. The same logic applies here. Just because I've limped along this far does not mean I've received good medical care nor that the physicians I've encountered have done their jobs.

As for how I feel, my stomach and back still bother me, but it's not as pronounced. I was very slow moving and weak at the grocery store, but I sucked it up. I'm trying to push as much as I can because life goes on whether I'm capable of living it or not. I'm doing what I can.

It would be nice if the doctors in my life would do what they could too.

Before & After

Before the alternate day prednisone taper...

-I hit 800 on the peak flow meter for the first time and had started hitting 600-610 almost daily. (I had a super happy post written up about it too, which was preempted by the 'after' portion of this post.)

-I was up to exercising twice a day and was finally on the cusp of regaining lost ground. (30 min elliptical or aerobics, 1.5 mile walk with dog)

-I was pretty much back into my regular daily life groove.

After the alternate day taper started...

-I began to bleed to death.

-I lacked energy for exercise or simple daily chores.

-Had trouble staying awake--falling 'asleep' against my will. Did not feel safe to drive.

-Seem to have had some blood sugar issues.

-Weak and short of breath (not asthma)

-I felt so badly, I went to the ER.

-The asthma has mildly flared in the last 48 hours and I've lost ground on the peak flow meter. (My sincere hope is that this is just related to the general upheaval in my body and not any real asthma. As in, it will calm down when everything else does.)

I am still tired. The morning yesterday was okay, but then the rest of the day sucked lemons. I don't know what's happening. Hopefully the adrenals are slowly coming back but I am going to be pushy push pushing for some tests.

This Is Just Too Funny: Prednisone Puncline

From drugs.com, the following are side effects of prednisone that require immediate medical attention.

For some reason, this makes me laugh. Not in a good way though. I'll bold all the symptoms I have just for fun.

"Seek medical attention right away if any of these SEVERE side effects occur when using Prednisone:

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); appetite loss; black, tarry stools; changes in menstrual periods convulsions; depression; diarrhea; dizziness; exaggerated sense of well-being; fever; general body discomfort; headache; increased pressure in the eye; joint or muscle pain; mood swings; muscle weakness; personality changes; prolonged sore throat, cold, or fever; puffing of the face; severe nausea or vomiting; swelling of feet or legs; unusual weight gain; vomiting material that looks like coffee grounds; weakness; weight loss."

Source

Do you think ANY of the doctors who have SEEN me thus far have read this? I have brought it up, it's not like I've been sitting silently (although I didn't start googling until now). If I can breathe I speak up.

No one is listening. Again, this makes me laugh. Again, not in a good way. I just don't know what else to do. Cry? Nah.

And from medicine net we have...

(ignore the hyperlinks, they aren't mine)

What are steroid withdrawal symptoms?

Steroid withdrawal symptoms can mimic many other medical problems. Weakness, fatigue, decreased appetite, weight loss, nausea, vomiting, diarrhea (which can lead to fluid and electrolyte abnormalities), and abdominal pain are common. Blood pressure can become too low, leading to dizziness or fainting. Blood sugar levels may drop. Women also may note menstrual changes. Less often, joint pain, muscle aches, fever, mental changes, or elevations of calcium may be noted. Decrease in gastrointestinal contractions can occur, leading to dilation of the intestine (ileus).

Source

The University of Cincinnati shares...

"Common signs and symptoms of too rapid tapering of prednisone and other glucocorticoids include:

• headache
• dizziness
• fainting
• fatigue
• lethargy
• muscle pain
• joint pain
• shortness of breath
• low blood pressure
• nausea
• vomiting
• anorexia
• weight loss
• fever
• and low blood sugar."

Source

I have no idea what the hell is wrong with me, but my spidey sense says prednisone + PCOS = Not Good.

It's a good thing I finally put 2 and 2 together in the ER. NOW the question is WHAT to do about it over the weekend? Continue the taper and hope this is just a rough spot? Take some every day until I can talk to the pulmonologist (who I called today and left a message for)?

I am leaning toward going back to daily use for the weekend because I have to drive tomorrow. I don't want to kill myself or anyone else.

At least I know why the ER missed it--they use 5 day bursts almost exclusively. I don't think they see people like me who use it longer and are sensitive to it. They checked my cortisol at like 2pm on a day when I've taken prednisone which is pretty useless. They were trying, but what I really needed was someone to figure out a new taper.

Lacking the pulmonologist's expertise, my vote would be to go to 5mg for a week and then try to alternate days. Or even go to 2.5mg to be really gentle. Maybe that would do the trick.

I really really really DO NOT WANT CUSHINGS EVER AGAIN. Thank You.

Prednisone Pain

I had a minor slip up last night with my efforts to combat the insatiable appetite prednisone sparks. Prednisone munchies hit me hard just when hubby walked in the door with tortilla chips and salsa. I ended up having 8 chips with salsa before displacing the urge to eat into celery with 2 tbsp. bleu cheese dressing spiked with hot sauce.

I literally could not stop myself. It took an enormous amount of will to NOT gorge.

8 chips doesn't sound like a lot (especially considering hubby ate 1/2 the bag in one sitting) but if you look at the label, the chips are pretty high carb even in small amounts. It's enough to derail my low carb efforts and I do feel bloated today.

I told hubby the bag of chips better be out of the house when I woke up this morning. He took them to work. Thank goodness!

I am on day 2 of no rescue inhaler and I'm feeling really strong today. Except super sore in my ribs and legs. The rib pain is all asthma. As for the legs...well,the other day it seemed like a good idea to do 15 minutes of lower than low impact aerobics. I improvised a cardio kickbox routine and did 20 squats. Piddly little workout. There are 100 year old women who workout harder, I'm sure. So nothing major, but here I am in a lot of pain.

I think the prednisone might have something to do with that--it can interfere with the ability of muscle cells to use calcium which impacts contraction. I've had charley horses in the past with prednisone and remember having to be really careful about how I exercised. Strength training was out and I didn't dare make any sudden moves or else things would spasm. This made the elliptical the ideal workout for me--same motion over and over.

In my opinion, I am way too sore for what I did the other day. I actually shrieked when the toddler went to sit on me today. Very painful. I took Tylenol Pm before bed and was up last night at 3am taking regular Tylenol too. I am about to start alternating doses of Tylenol and Advil (aside from the joy of bringing the toddler home from the hospital, this little pain relief trick was a highlight of giving birth).

So today I'll dial it back a notch and maybe take the dog for a walk. Something gentle. And if I can work up the courage, I'll try to massage the worst of it out of my muscles. It works but it hurts. Similar to the choice between ripping the band aid off fast or slow. Pick your poison.

Cushings Round Two: Saved by the Krebs Cycle

Note 1:You can read about the first time I had Cushing's here.

Note 2: Today is the day I see a new endocrinologist. I am terrified that I will find no help. That no one will listen to me, again. My husband is coming with, to help keep everyone on track and so I don't just give up and walk away, again. Good thoughts would be appreciated.

Note 3: The picture above is from my actual lab result. I am not super tech savvy so that's why it's so funky looking. (Also I wanted to crop out my name.)




The second time I had Cushings was slightly better than the first in that it was diagnosed. I must add, that the diagnosis came after much pushing on my part. I had finally done some reading and knew that something bad had happened to me as a result of the prednisone in the past. I had no desire to repeat history and was emphatic about being tested.

The blood work came back at 1. Normal cortisol levels start at something like 8.

For a year, we tapered prednisone and did 2 hour challenge tests (have no idea what the official medical term was for the test).

I felt like shit, but having gone through it before, I marshaled my resources. I watched what I ate. I exercised despite some pretty significant muscle pain. I didn't lose weight, but I didn't gain either. I might have lost if I'd known about low carb eating (which is actually recommended for Cushings FYI).

And when they gave me the thumbs up to stop the prednisone, everything went to hell.

I had less energy than a corpse. Actually had issues staying conscious at times. Slept 15 hours a day. Went to work, fought to stay awake (passed out once at work), came home and went to bed. If I laid down, I would essentially pass out. So I had to keep moving as much as possible in an effort to keep myself from falling asleep against my will.

This may seem like exaggeration or hyperbole, it is not. This was literally my life.

God, it was awful. Thankfully, at least I wasn't driving--the hubby took me to work as our jobs were in the same area for the same company.

Dutifully, I presented myself to the doctor and they could find nothing wrong.

By this time, I had also enrolled in some basic anatomy and physiology classes. Doctors practice defensive medicine,right? Well I needed to put together my own special brand of defense. I couldn't count on doctors anymore.

While studying the Krebs Cycle in my A&P textbook, I stumbled upon a chart that listed important vitamins/nutrients related to the Krebs Cycle and ATP production.

A light bulb went off in my head.

If prednisone interfered with nutrient absorption?

And I had been on it for a year?

And on it intermittently for years before that?

And I had no energy, ergo maybe there was something going on with ATP production?

And I wasn't a big vitamin taker?

Given all that, what could pantothenic acid do for me? (Link goes to an article on the Krebs Cycle.)

I bought some that night. Took five pills, beyond caring about an overdose and figuring more was better.

80% improvement overnight. No lie. It was more than a miracle.

It took another two years to recover the remaining 20%--something I attribute to still not fully understanding how nutritionally deficient the prednisone had left me. (And also the incredible lack of awareness within the medical community about how prednisone and Exogenous Cushings could affect someone even after the adrenal glands started working again.) So between the first episode of Cushings and the second, Cushings consumed my life from the age of 22 through 30.

What were you doing in your 20s? Probably off having a lot of fun that was not even an option for me. I hate that about my 20s. Then in my 30s, I got hit with PCOS and infertility. I feel gypped.

Anyway, not once had a doctor thought to check my B levels or assess me for any other nutritional deficiencies. Oh, they checked me for diabetes. They checked my adrenals again, but they missed the obvious. Again.

(Doctors don't seem to know much about nutrition and it is hurting patients like me. A book I highly recommend, that I've even seen in some physician offices is Prescription for Nutritional Healing.)

This was also the turning point that marked my enduring interest in nutritional/alternative therapies. I have had really good experiences with vitamins. Now, I don't know if that's because I was chronically deficient from the prednisone or what, but they work for me. I am more likely to try a vitamin, natural remedy or supplement than a prescription drug, often with great results.

In fact, right now, I'm eating celery every day for my blood pressure (which remains low with the occasional higher reading, but I'm still on prednisone too). I read about its impact on blood pressure and, since I currently eat a lot of celery due to prednisone munchies anyway, I thought, why not see what happens?

What the hell? It can't hurt me any more than a doctor would.

Note: I've recently learned about steroid withdrawal which sheds new light on this story.

What I Wish Doctors Had Told Me About Living with Prednisone Side Effects

First, I want to say that, this time around, the prednisone is kind of amping up my 'ranty pants' qualities. So if I've been sounding really over-the-top in my previous posts, that's why. It should abate soon.

I hope. Or maybe I am a lunatic. Time will tell.

I did want to spend some time talking about prednisone and weight gain. I spent most of my teen years through my late twenties more on prednisone than off. This eventually led to Cushings twice.

Just getting the Cushings diagnosed was a huge challenge, forget about help with the side effects of prednisone. The first time I had Cushings, it went undiagnosed and I gained a lot of weight. The second time, I had a pulmonologist and it was diagnosed but I didn't get much help beyond that. I eventually concocted my own brand of coping skills to avoid weight gain. In the year it took for my adrenals to wake back up, I managed to avoid weight gain, control my eating and consistently exercise (despite lots of muscle cramps).

Now that I'm on prednisone again for a decent length of time (as opposed to a 5 day burst which is nothing), I'm back to trying to figure out how to avoid weight gain, stay active, and properly feed my body. Here's what I wish my doctors had told me about living with the side effects of prednisone.

1. You're going to be hungry. The kind of hunger that makes cannibalism attractive. Do NOT eat a bunch of junk or you will gain a ton of weight. Prednisone hunger is insatiable, you can't satisfy it so don't try. Skip the pizza and ice cream, go for low calorie options like veggies. If you must binge, displace your appetite to the lowest calorie food you can. I once ate a box of Cheerios, which I felt was better than inhaling a large pizza. Last week, I ate an entire bunch of celery in one sitting.

2.Invest in hard candy and flavored waters. Use them to distract yourself and avoid eating.

3.Don't skip meals. Eat protein and fat at every meal to balance blood sugar and slow down the appetite. Avoid simple carbs to prevent blood sugar spikes which can drive prednisone hunger.

4.Don't snack. Just make a commitment that you're not going to eat unless it is meal time. Once the prednisone is done with you, snack away. However, since it can be so difficult to moderate food intake under the influence of prednisone, it makes sense to avoid snacks.

5.Watch your portions. A 'little bit' more at every meal adds up to 'a lot.' The problem with prednisone is the appetite doesn't stop, it just expands to demand even more. You can't eat yourself out of the hunger. I can not emphasize this enough. There is NO satiation with prednisone so you must to learn to cope with the hunger.

I have literally sat on my hands in the past to keep myself from eating while under the influence.

6.Exercise if you can. Even a little bit will help.

7.Take a good vitamin B supplement as well as calcium and magnesium, but NEVER take them at the same time as the prednisone. Prednisone interferes with your body's ability to absorb/use nutrients including vitamin pills. This can result in muscle cramps and lack of energy. Good supplements are a must for your own comfort.

8.Find something else to do. Get absorbed in a new project or go do something fun that doesn't involve food. Keeping busy is a great way to avoid overeating while on prednisone. I started this blog, for instance (now you know why it's just long post after long post, I'm trying to stay away from the kitchen!). Do you have something you've always wanted to do, but have put off and put off? Well now would be a great time to finally go out and do it. Go! Have fun!

9.Don't weigh yourself. No matter how well you eat, you're going to gain some weight. If you're careful, it will just be a fluid fluctuation that will resolve on its own. So don't panic. Don't fixate on weight. Focus instead on eating right and exercising. If you do that, everything else will fall into place.

10.Be vigilant. Prednisone can still affect you long after the last dose. You may not have any appetite issues while taking it only to find yourself being banned from an all-you-can-eat buffet a week after your last dose. Water weight can show up later too. I once gained 20 pounds of water after I stopped prednisone. It was very uncomfortable and it took several days for me to get it out of my system.

11. Don't beat yourself up if you slip or gain weight. Prednisone is a bitch. Do your best because even if you aren't perfect, you still will gain less weight than if you had given up.

12. Remember this is temporary. This too shall pass. Just breathe.

And if, like me, you are on prednisone too, here's a virtual {{{{{{{hug}}}}}}}. You can do this, but you have to fight for it. It won't come easy. It's not fair, but that's the reality.

For me, currently...I am doing okay with the eating. Eating a bit too much here and there but keeping it low carb. I actually lost a pound at yesterday's weigh in. However, I know that I really need to exercise to stave off weight gain and I'm not quite there yet. I've been nebulizer free for 2 days now, but the peak flow is still not back to normal (actually I wonder if the lower number is my new 'normal' which is not a pleasant thought). I've also got a couple more weeks of prednisone side effects to battle through.