Feeling Fine

Saturday I sent the following text to my hubby:

"Asthma is not controlled, peak flow dropped, lots of congestion and I stopped steroids this morning. Otherwise, everything is fine."

Oh hey, that's the solution to all my troubles! I just need a new definition of fine!

And then I asked him to bring home a Coke Zero from the gas station.

Because when you're feeling so damn fine, you need to drink something bad for you. Just in case it can make you feel 'finer'.

I've had a social conundrum come up. Smoking is the theme.

First there was the neighbor's birthday party where the entire family smoked like chimneys. I was probably the only non-smoker and asthmatic. I quickly bowed out of that one with an awkward 'oh hey, I have asthma and I can't breathe this air unless I want an ER visit' explanation to the rather shocked hostess. I spent the next 4-5 hours fighting an acute asthma attack from just passing exposure. My lungs were pretty sensitive that time as I was sick with the bug o' doom.

Then there was another birthday party, the magician one. Well, there were a few guests who felt that since, we were outside and on a patio, they could light up. I left before I killed them with my death glare. Thankfully, that party was more open air and the exposure didn't cause any problems for me.

Now I have an invitation to a 'Mom's night out' party and it's got a fun theme. I want to go, but I'm afraid of the smoking. Which means I have to call the hostess and either:

A) Lie about why I can't go and not go. At least I'll have my dignity with this one. But it doesn't really make me friends because I never go to anything!

B) Explain how I'm this hypochondriac nut job (as I think they see me) and they need to worry about my health and possibly confront some guests about not smoking, which policing party guests is the reason everyone opens their homes, right?

C) Say nothing, go to the party and leave abruptly when the smoking starts which makes me look like I'm socially maladjusted. "She seemed nice, but then she ran out of here like something was on fire. I don't know what happened? Do we smell or something?"

D) The party is on my actual birthday and I probably can't/shouldn't go anyway (see option A). Because, you know, birthday cake obligations. Isn't it a misdemeanor to mess with the birthday cake schedule?

So what option would you go with?

Read More

Getting There

I'm down to 2.5 mg. It just seemed like I needed to taper a bit faster. My body shifted gears to feeling like I had too much steroid rather quickly.

I never know if I'm right until it's done, but I'm about 95% accurate when I change the dose.

Of course, tapering makes me tired, but not tapering was not working either.

I've been sleeping a lot.

Dreaming of exercise.

Sometimes I try to work. I have several stories I'd like to finish, but my brain is still not quite synapsing normally due to the fatigue. It takes a super human effort for me to write even 500 words that are worthy of publication.

I think this time next week, I should feel like I'm past the worst of it. But I could be wrong.

Meanwhile, I'm sucking down my first Coke Zero in a month to see if it'll help crank me up. So far, it's not working.

The toddler had a lovely play date with a bunch of other kids. Perfect behavior. It was nice to see because I think every parent worries that one bad interaction means big problems. I know she's a good kid. I know we get a lot of the big things right as parents, but there has been such conflict with the neighborhood kids. But I don't think their parents are as attentive as they could be to their kids' social skills.

I don't like our neighborhood anymore. The housing market crash has changed the demographics quite a bit. Ideally we would move to another school district. One where parents pay more attention to their kids than their cigarettes. But I'm not sure that will happen.

You know, smoking has been such an issue--I think we're the only non-smoking parents on our street--that I want to find an asthma commune. I'm tired of having to awkwardly bow out of social gatherings because I can't handle the smoke.

Also, I am starting to think there really is a correlation between smoking and parenting. I have not found it to be a positive one.

I'm sure there are great parents out there who smoke, but I'm not living next to any of them.

Read More

Tapering and More Food

I tapered yesterday because today is going to be a bit busy and I wanted to be through the worst of it. Went down to 7.5mg of hydrocortisone. It was okay. I had some issued with weakness and fatigue and lack of appetite, but it passed. I was able to go for a walk and did a slooooow elliptical workout for about 20 agonizing minutes.

In my new office.

Yes. New. Office. Mine.

See, house guest 2 left and, since I do produce income with writing, I feel justified taking a room over for myself. And I put our ancient elliptical in here with me so I can combine writing and exercise (assuming I have the energy for it) because sitting is so damn bad for you.

The toddler's new playroom is in the basement. Where I'll probably end up writing since it's cooler down there. I want to be cheap and not run the a/c during the day this summer. (We'll see how long I can suck the heat up.)

Here are some food pics. I'm going through a food phase. Are you shocked to hear that?

Dinner last night was a huge indulgence. One of my favorite meals. Steak. Salad. Broccoli and fresh berries.

The salad was an apple-pecan-bleu cheese medley with a homemade balsamic dressing.



A few days ago, the strawberries looked so luscious I decided to make love to them with chocolate.


And...here's a bit of a food flop. Gluten-free high protein gnocchi. They were yummy, but the first batch disintegrated in the water. I baked the rest and that was our lunch.


Now for those keeping track of my GERD (which I hope not because that's probably weird), tomatoes are a problem for me. I tried it without Nexium, but I got slammed with stomach acid and had to take some before acid started squirting out of my mouth every time I talked. Gah. What an awful feeling. Dislike!

Read More

Patient Friendly Steroid Tapering for HPA Axis Suppression (aka Secondary Adrenal Insuficiency Due to Steroid Use)

All too often the only tapering regimen offered to patients whose HPA axis has been suppressed is one single am morning dose.

For the majority of patients this is probably fine. Their HPA axis probably can't wait to wake up.

For me? This is a nightmare.

If you are suppressed and tapering is not going so well, here's my dream tapering regimen. One that should minimize pain and maximize energy.

Oh yes, standard disclaimer: Not a doctor and not pretending to be one either. Follow advice on this blog at your own risk.

1. Switch to hydrocortisone. The half life is shorter, which stimulates the HPA axis at night. This is key because recovery will be hindered if steroids are in your system 24/7. The brain needs to be steroid free at night in order for the HPA axis to begin to wake up.

2. Split dose. The bulk of the dose should be in the morning with a small boost around noon. Just to be clear, this is NOT what patients with permanent adrenal insufficiency do. This split dose is designed to keep patients upright during the day while also allowing the steroids to be out of the system at night per #1.

3.Over time, slowly take that noon dose earlier and earlier until it merges with the morning dose. Start with 11:30, then 11, 10:30 and so on to tolerance. Try changing the time every 2 to 3 days and see how it goes.

4.When you can get through a whole day with just an am dose, you can start to cut pills. Up until this point, just moving that noon dose has been your taper.

5.Slow and low is the name of the game. Taper by 1 to 2.5 mg, no more. When your HPA axis is up and running the tapers can be bigger and faster, but until then, the slower and lower, the better. The turtle wins this race, not the rabbit.

6.Whenever you feel good, that's a sign it's time to taper. Feeling good means your body is producing cortisol to fill the gap left by the previous taper and it is safe to taper further.

You don't want to taper before your body has adjusted, that's a brutal thing to do. Going too fast can also put you in the hole. Looking back, I realize I frequently flirted with an adrenal crisis by tapering too fast and underdosing when I had problems. Don't do that.

If you listen to your body, it will tell you what you need much better than any physician or blood test can.

7.Don't taper in the 10-12 days leading up to a menstrual cycle. The hormonal changes can be hard on you when you're suppressed. Now, if you go through a cycle and it's no big deal, then feel free to experiment, but watch yourself closely for signs of strain.

Also avoid tapering during especially busy or stressful days. The day you tell your spouse you want a divorce, for example, would not be a good time to taper.

8.Increase the dose when you are sick or if your parent dies or during any other stressful event. You can wait until your body tells you it needs the steroids, you don't have to make a preemptive strike. Your body will very painfully tell you when it's not making it.

Keep steroids handy so you can take them the second you hit the wall. Within an hour you should feel better. If not, you either need more steroid or the adrenals are not the problem and it's something else.

As for how much to take, well, there are no guideline for stress dosing in the midst of HPA axis suppression. Most docs will not give out any information under the belief that stress dosing is not necessary for suppression (it is) or will pull from the literature on patients with permanent adrenal insufficiency, which does not reflect the core goal of stimulating cortisol production. So you will have to experiment because, with suppression, the goal is always to take as little steroid as possible.

Will an extra 5mg do it or do you need to double or triple the dose? Early on, this will be very hard to decide, but your body will teach you the rules it's going to live by and you'll eventually know exactly what dose you need in various scenarios.

The nice thing about suppression is, if the dose isn't right, your body will cease to function until you take more steroids. There's little room for misinterpretation. Can't get out of bed? Take 5 more mg!

Read More

Just Doing It

I made 'paleo' cut out cookies for the toddler. Not my best experiment, but she was happy. The true test will be if she eats them tomorrow or not. I'm thinking not. Too much honey, which I had already reduced from the original recipe.



Those are supposed to be Rudolph and some trees. It was harder than I thought it would be to assemble the reindeer. That's what I get for thinking I was so clever to use cranberries, pecans and dark chocolate for decorating. The chemical laden version of this cookie uses M&Ms and chocolate covered pretzels. And looks perfectly lovely.

Is there a metaphor in there about beautiful poison?

Anyway...

We've also been working on a button ornament. Dual purpose holiday craft and fine motor OT. It's turning out rather cute in a 'only a mother could love it' way. Good thing I'm the mother.


I always try to have some kind of craft/activity going on around the holidays. The button ornament was our Thanksgiving project. Christmas Day we'll have a pop-up cardboard castle that will need to be painted and decorated. That will keep us busy.

Felt pretty rotten most of the day, Thursday. I ate, but got super loopy anyways. So I ate some more. And then more. Finally, the food cooked in and I could get up off the couch. Four hours later than when I'd planned on baking those cookies, but it was the best I could do.

Read More

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.

Read More

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.

Read More

Make Up Your Own Title As I'm Stumped Pickle Time

Edited at the bottom of post.

Okay, this is just wrong. My body keeps trying to fall asleep on me. I don't feel particularly bad or anything, but my body wants to make like Rip Van Winkle.

I skipped one day of exercise. Probably will miss today too as the house needs to be cleaned and I will be too tired after that to do much.

There is the occasional flank pain/twinge, which let's hope it's just that those nerves have learned to fire that pattern and are doing it just for fun.

Maybe I should eat? I'm not hungry right now though BUT sometimes those sugar lows kill my appetite. Although I just had breakfast an hour ago.

I don't know. Feeling not too bad but not too good.

There was finally some weight loss after 6+ months of nothing. Just in time for me to eat birthday cake and mess it all up. Sigh.

The HIDA scan is tomorrow. I am crossing everything it helps find a solution. A few days ago, the gut kept me up and googling, until 2 am, trying to discern whether I needed immediate medical care or not. I voted for not and the gut calmed down eventually, but it's still there, ready to pounce at the slightest provocation.

Edited: I ate, it didn't help. My BP is low, not completely tanking but 100/60 ish which is low for me. I am also symptomatic of low BP and feel like I'm being sucker punched (aka adrenals are pissed). So drank 3/4 cup pickle juice followed by a square of toffee (12g carb). Let's hope that turns it around because I need to clean the house.

Just to make it more fun, the toddler is bleeding to death. She fell. (Of course!) She's phobic about band-aids. I finally got one on her after an hour of trying to soothe the hysterics (unsuccessful). She has now bled through the band-aid. (Of course!) Up next is the big sterile gauze pad which I'm pretty sure will cause her to hyperventilate and scar her for life.

Wish me luck.

Read More

Latest Am Cortisol Results & Other Things

Am cortisol drawn earlier this week was 11. I was told anything over 10 is considered normal. However, there are, as usual, 50 different ways to interpret the results.

Here.

Here.

Here.

Just to name a few. There are many, many more. Both for and against.

My take? Remains the same. I am okay to be off steroids, but not quite up to full production capacity and the HPA axis is still somewhat unresponsive to demand. The endo obliquely alluded to that in our short phone conversation.

I am realizing though, if my take is accurate, this may be SAI or a recovery. It could go either way. I hadn't thought of it that way before. I just assumed the HPAA would ramp up, but I guess it may not.

I am also underwhelmed that the am cortisol level isn't higher than it was in December when we did the first ACTH test. It's actually a bit lower, although probably still within the realm of normal fluctuation. I was hoping for a 15 (I've heard of endos that say you'll feel like crap at anything below 15 and I believe it!).

Nothing changes. I push myself to live as fully as I can so that, if I tank, it will show up on the ACTH test. The endo says from here it depends on how I feel. I didn't pursue that statement, but I infer that it means I could take steroids if I needed them? Or maybe if I still feel slow and sluggish they would do more testing? Wish I had thought to ask for an elaboration.

As for the gut, it has finally calmed down. My gallbladder ( I assume) is still bouncing around in there, causing a lot of sensation on the right upper and lower quadrants of my abdomen (it often mimics appendicitis and/or being skewered for shish kabob for some reason) but the heartburn seems to be under control. 40mg of Nexium seemed to do the trick. There's a lot less bloating and inflammation in the GI system than there was...so progress.

With regards to the writing, for those of you who asked to read...ummm. That's a hard one. It's kind of like asking to see me naked. Also it is very cheesy smut because that's what sells. Plus, it was what I had in my backlist to develop.

I am working on a project that will probably intersect with anything of mine that is published, so if you follow that when it's up, you'll likely encounter any books I have out.

Read More

Endo Appt Minutes

I should be cleaning the house, which got pretty trashed during the two day edit-a-thon, but cleaning is no fun and blogging is a good way to procrastinate. The only complication, the toddler is having one of those 'mommy, hold me' days so we'll see how long I get to type.

1. I went in early and did the am cortisol draw. Although I think the standing order the endo put in was something more elaborate because I had the fancy test tube on ice blood draw for ACTH.

I will be shocked if it comes back low as I felt pretty awake compared to the previous two days though, I was comatose (just could not wake up and spent most of my time trying to finagle a way to lay down).

2. I was offered the option to go back on steroids after reporting that I exercised for two days in a row and then was laid low for two days as a result. (It's not just fatigue, it's heaviness in my limbs, like they are physically heavier than usual and I just don't have the muscle strength to move them.)

I said HELL NO. I did appreciate the offer and was really surprised at the idea that anyone gave two shakes about how I felt. But good Lord, to go backwards? No no no no no no nooooooooooo.

My take is that I must have some HPA axis functionality to even stop the steroids and it's do or die time. Either it works and I recover, or it tanks and the conversation changes, focusing on the lack of recovery. However, two days where just getting out of bed was an achievement is not tanking. It's not bad enough for me to go back on steroids.

(Okay, it may be that my sense of normal is messed up at this point, but I'm just not going to updose every time I feel tired.)

For all I know this is just part of the adjustment to the change in dose. It may pass, right?

3.We talked a bit about preventing suppression. A note was sent to pulmonology but I have no idea what it said. Probably something like 'this patient would not shut up until I sent a note, so act like I wrote something important when you see her.'

I told the endo my big fear is that I'm eventually going to end up intubated or in another situation where I can't speak for myself, it's just a matter of time. I don't want people thinking they can do whatever with steroids. They told me not to worry, I would be on steroids as long as I was intubated.

To which I replied, "Never underestimate the ability of someone to cut off steroids cold turkey."

One pulmo wanted to cut me off at 20mg last year. When I challenged that, I got 10mg, which was still too high. I have yet to meet a pulmo who seems to be cognizant of what a proper steroid taper should be. I have further refined my knowledge over the last year and now I know, but I am not always in a position to properly advocate for myself.

There needs to be a neon flashing sign in my electronic chart. "Patient has HPA axis of a gnat."

4. Another ACTH challenge is scheduled for July. Another shocker. I expected to be dismissed into the sunset, but instead I received thoughtful and conscientious medical care. I don't know what changed. Maybe I've proven I'm not a jerk or they've found this blog (in which case Hi!).

Between now and the test, my goal is to start exercising and pushing myself toward a normal schedule so that if I can't hack it, it will show up on the test. The only thing is, I'm still dragging a bit and would really rather sleep. Squats just don't hold any appeal right now for some reason.

One issue with the ACTH challenge, it is not diagnostic of Secondary Adrenal Insufficiency (SAI) from what I know. SAI can yield a normal ACTH challenge, yet the patient can still be insufficient. The ITT (Insulin Tolerance Test) is what diagnoses SAI so the testing may be of limited utility.

I highly doubt I'm dealing with Primary Adrenal Insufficiency. It would have to be SAI because I do have some functionality, just, possibly, not enough to allow me to do much.

My sincere hope is that I've achieved a baseline functionality that allows me to be off steroids, but that there's just a gap still between day-to-day production and ramping up to accommodate normal activities.

I don't think the endo sees it that way, which is fine, but I had hoped they would say 'Yes, that could be it exactly.' That didn't happen, but I'd like to hold on to my fantasy, okay? It has a happy ending and everything.

Read More

Phases of Cortisol Production

Once the HPA axis seemed to 'turn on' each taper has followed the same rough trajectory:

First there's the 'Oh wow! I feel GREAT! Tapering is going so well!' phase.

This is followed by my body screeching 'WHAT? You didn't tell me I was going to have to work every day. Bitch, I'm union. Suck this low blood sugar.' phase.

Then, eventually my body feels bad enough that it seems to grudgingly start doing what it's supposed to, the 'Okay FINE, I'll do it, but you're paying me triple time. Also, I'm doing this for ME, not YOU' phase.

I seem to be in phase two. I don't know why that is, but I'm tired of it. Suck it up, get it together let's go. There is no reason for me to feel like crap. None.

Although, I wonder how much of a drag the gut thing is on the system. This thing is marching toward an unpleasant endgame and I wonder if I will be able to hold out until the forthcoming appointment dates.

Read More

The Latest

I am tired today. Had a nice weekend. Worked out twice. Once on the elliptical, then went for a lovely walk. Saw lots of deer and deer babies up close and personal. Then my blood sugar crashed and I dragged myself around the rest of the weekend managing to get the groceries bought and keep the toddler entertained.

A hard core X-rated makeout session with some butter toffee helped. (Turns out grocery shopping + low blood sugar = toffee in the grocery cart.)

Today it was hard to get out of bed and get up. I'm still not feeling awake and it's almost 1pm. It could just be a toffee hangover.

I will go early to the endo appt later this week and get an am cortisol draw just to be safe ( I think I mentioned this, no?). Hopefully this is just a natural adjustment period after having been on steroids for so long.

I do recall that ending the steroids during past HPA axis suppressions did not necessarily correlate with feeling 100%. It took about a year the last time for me to feel human again.

Saw the PCP today and had some blood work (testing liver and ruling out h.pylori). We are scheduling a HIDA scan and I will be seeing a GI doc. Which I should have done much sooner, but it is very difficult to properly care for such a malfunctioning body. I feel like I'm trying to plug holes in the dam wall and I've run out of fingers.

You can only go to the doctor so much, you know? I can't keep up with all that needs to be done. I think if I did everything I was supposed to, I could probably see doctors continuously which...ugh not the lifestyle I'm going for.

My sincere hope is to be free of all but the most basic medical maintenance, but I fear I will never know what it is to live without some kind of medical constraint again.

Read More

Three Quick Hits

1. The toddler fell down the stairs and had a leg collapse while standing after the EI assessment. I should have known it was coming as muscle fatigue is a trigger, however, I flaked and forgot to watch her on the steps. Thankfully it was not a serious fall. I am annoyed that this 360 view is absent from the EI assessment.

(Also, I'm laughing remembering how they said any OT would be 'short term' which I don't think they realize it took a year to see some progress in PT--some as in we have more work to do because there are still deficits. I have the feeling they think if they just let her run with scissors she'll be fine, their naivete makes me giggle.)

She also had a big tantrum at her PT session and ended up throwing her shoes at the PT (who is the sweetest most lovely person). She was hot. She was tired. Her feet hurt from all the PT and she couldn't articulate it.

She felt terrible about it and sobbed all the way home. We are working on a way to make amends with the PT (who completely understands, but I don't want the lesson to pass the toddler by, you fix what you break).

2. I have stopped taking steroids. It could've gone either way and, in fact, when I listed the pros and cons, the up dose column kind of won. However, updosing wasn't much help last week so I stopped taking steroids instead.

While it's too early to claim victory, I think it's going to be okay. (Don't worry, I will still whine for weeks about withdrawal/insufficiency symptoms.)

I have an endo appt coming up and plan to do an am cortisol draw the same day just to be safe. I think we now begin to move into the next phase of this mess...

-Re-enter standing orders for more cortisol tests on the off chance I tank again. The fact continues to be, I had weaned and exercise brought me low. It's not enough to be off steroids, I need to be off them and exercising and working and parenting with impunity. The goal is a life, anything less is a failure.

-Writing a note to the pulmonologist who believes none of this is adrenal with an 'is to' message and instructions on how to taper steroids in the future.

-What other protections can be invoked? If I can't put some protections in place, there is nothing to stop this from happening again. It needs to not happen again. Really there's no excuse. If it's not a known, documented problem by now, there's no hope for medicine and only despair for patients.

3.My PCP still has not called me back re: the gut. Bwahahahaha. Isn't it amazing how this stuff happens and happens and happens? I'll give it another day before I bug them.

Read More

The Normal of Tired

To wrap up loose ends from the last post... I have a meter but no strips. I once had a forward thinking PCP who wanted me to check my blood sugar just because of the insulin resistance, but they don't take my insurance and they missed a few diagnoses/didn't listen to me that it's not worth it to me to bankrupt myself to continue with them. So the strips ran out a long time ago. (Do strips require a prescription? I can't remember.)

So maybe I was low. It's just weird. Because I purposely eat when I'm tapering to avoid lows. I know I'm at risk and my efforts to avoid the problem have been pretty successful in the past so the whole thing was just odd.

The taper has been generally fine. I am mucking things up a bit by doing too much. I've started lightly exercising, trying to get back into a routine. Yesterday I spent 3 hours in 95 degree heat. We were at a splash pad, so I was able to stay relatively cool and we drank like fish, but it was too much for me. I just never came back from that.

Today I'm updosing a bit and then will go back to 2.5mg tomorrow. Just in time for a hot day at the pool, preceded by a toddler ice cream party which is similar enough to a birthday party to make me cringe. Let's hope my wishy-washy body is up for it.

At the moment, I'm waiting for the steroids to kick in and get my motor going. Once I finally feel awake/alive, the toddler and I will be running a marathon of errands and then I will probably take a nap.

Read More

Pleased

It's down to the wire now and it's trickier than ever, but I tapered. Again.

I don't know, it just didn't feel right to updose and it's not like I can't updose if I need it, I can. So why not shoot for the stars?

On 2.5mg of Hydrocortisone today, I...

-stopped at the dry cleaners to pick up our ozoned drapes
-returned a too small sand box at Toys R Us and bought some other stuff for the toddler to help with hand-eye coordination OT goals
-went to Target and spent $20 (which is a miracle, Target is a money suck) to update the toddler's dance wardrobe as her class starts tomorrow
-picked up a lunch
-went to park and dealt with toddler tantrums over the swing. It wasn't swing-y enough???
-went to the grocery store with an whiny toddler

Felt pretty good until the grocery store, at which point I wanted to keel over and spoon the cold freezer doors in the ice cream aisle.

I've felt worse and clawed my way through, but it was weird. I started shaking and sweating and my mind wobbled like jello. If you'd asked me what 2 + 2 was, I would've said Pluto.

Thankfully the shopping was pretty much done, but not before I dropped a bunch of yogurt all over the floor. The shaking made me clumsy. (Of course the yogurt broke open and made a huge mess while everyone watched.)

It was not low blood sugar, I had just eaten and made sure to include some carbs in the form of cherries. Or maybe it was low blood sugar and I should've eaten more cherries? Either way it was somehow taper related.

I would like to take a nap, but the toddler has informed me it's sand box time. Hopefully the hubby will be home from work sooner as opposed to later today.

Read More

Bump in the Road

The asthma is riding me hard. I actually slept okay, rescue inhaler clutched tightly in my hand, but this morning has been a battle. If only my legs were this taut...

My body seems to have finally realized the steroid level has dropped and ZOMG! gone into Defcon 5 mode as a result. This physiological panic attack mainly involves lots of painful charley horses.

So I updosed from 5mg to 7.5mg and hopefully that's enough to cushion the blow.

Read More

And Then...

It just never stops over here. When last we met, I had tanked but, instead of updosing, I tapered. That went better than I think anyone expected.

Of course, I had some adrenal weirdness, which I ignored. Because, dammit, my HPA axis is either working or not, anything above not is to be ignored at this point.

No, I don't understand how there can be quite so much flank pain with a taper of an already sub-physiologic dose in a body that has demonstrated some portion of HPA axis recovery. Really I don't, but, so long as the HPA axis is showing signs of life, it's going to have to sink or swim without an updose.

My teeth are finally starting to feel better. Which is good as I had given serious consideration to yanking them all out and just gumming my food for the rest of my life. The pain went down by increments of 10 to 20% at a time. Right now I'm teetering between an 80 to 90% improvement.

It would help if the cold we've all caught didn't require quite so many popsicles (sugar free) to calm the raging sore throat.

The cold irritates the epicenter of the infection in my mouth. Brain freeze is nothing. Try a pissed off tooth sometime.

So we are all sick here. Primary symptoms are sore throats and being crankier than the Hulk. Basically, everyone's being a jerk and arguing over popsicle flavors. The hubby has also been dogging on the low carb ice cream I've been kind enough to share with everyone even though they could get their own, much cheaper, full sugar ice cream.

Oh, hey. Listen to that. I know that horking sound. The yellow lab is puking up his dinner in the bathroom. Awesome. Plus, super extra special bonus...another tornado watch/warning tonight! (We had five touch down last week within 10 miles of us, did I mention that?)

We are like the Cedar Point of bad-things-that-aren't-horrible-yet-I-don't-see-any-of-you-jumping-for-joy-when-they-happen-to you over here. I should sell tickets.

Read More

Unexpected

I thought for sure I was going to updose after last night's post.

Instead, I got stubborn and tapered.

I felt that was probably a stupid move, but I was not happy and taking a stand.

Amazingly it has been fine.

I feel good.

So...the moral? Stupidity can be good????

In other news, the professional ebook I did broke the top 10 list in several categories on Amazon. Which is amazing cool.

However, FYI, you don't have to sell so many books to get there depending on the book topic. I published in a niche topic and am still not breaking even financially even as the book rises in the Amazon ranking system. Odd, no?

Still, I can now put on my resume 'top 10 author on Amazon' which is cool. How many people can say that?

Read More

Tired Redux

I'm tired. Finally hitting the wall BUT I refuse to admit it could be adrenal. Seems to me I've been pretty farking busy and normal healthy people would probably take a nap.

I took two.

In the same day.

But still not calling it adrenal.

Crossing fingers I can taper later this week to 5mg.

Yes, I'm serious.

The teeth are slowly killing me. Think sinus pain combined with toothache, the kind of toothache that requires a root canal. The dentist called in antibiotics for me, which has helped with the gum sensitivity and decreased pain in the teeth that weren't touched by a drill. The five that had fillings? Still hurt. A lot.

I'm told this pain can last for months.

So basically I got rid of the cavities and, in the process, gave myself a long term toothache.

I have all the luck. Try to contain your jealousy.

This is making it really difficult to find the motivation to follow through on the wisdom tooth surgery I need to have as soon as the HPA axis is up and running at full capacity.

So my question for the universe at this point is, when does my turn as target of medical f*ckuppery end? Any possibility I am over my quota? Can we audit my account? I'm awfully tired of getting jacked up every time I let a medical professional touch me.

I swear, by the time I get the normal old age stuff, I'll go in for a heart bypass and come out with a penis.

Which will be put on backwards.

Of course! Duh!

The toddler's last day of school is tomorrow. Hallelujah. She's been saying more positive things about school so I think the teachers finally got their sh*t together and started actually managing the classroom properly. Her Early Intervention assessment won't be until late late August. Hopefully something positive pans out from that.

My mom friends and I are forming a daughter study group as we are all feeling the stress of trying to raise strong, emotionally whole girls. I'm not the only one struggling with how to handle the preteen preview that occurs at the ages of 3 and 4. I'm excited about the group, I think it's going to be good. At least we can cry on each other's shoulders.

Ebook-wise, a review finally came out from a top tier blog which has generated some sales. Still not enough to convince me that non-fiction is much of a money maker. I'm furiously working on other projects, but it is very slow going.

Read More

For Brittany

Brittany left the following comment on a previous post:

Hi, I just found your blog. I've been trying to taper off hydrocortisone, and I'm afraid I'm not going to be able to get off. It's been over three years. I started at 30 mg and I'm finally at 2.5 mg after being on 5 mg for several months, but this decrease is not going well. I'm so extremely tired - it's so hard to stay awake. (My recent challenge/acth stimulation test showed an a.m. cortisol level of 6.)

I really don't know what to do. I have so many things I want to do, and feel like my life is on hold for this - I'm going to Europe this summer and my husband and I would like to have kids. This decrease went okay at first, but I just keep feeling more and more tired. I'm wondering if my adrenals have just recovered as much as they are going to, and this level isn't going to be enough.

My endo isn't sure I'm going to be able to get off, and said maybe it's autoimmune, even though a test for that came back negative. I have hashimoto's though, so I know that can be related.

I read through some of your posts - I'm now considering taking some B5...Any other advice you might have for me? (I had been on a bunch of supplements before, but a natural doc was the one who prescribed hydrocortisone for my fatigue in the first place, which led to a ton of horrible side effects that he insisted initially weren't from the steriods...so I got out of the natural things and stopped googling as much...but I'm getting desperate.)

I'm sorry you've had to deal with so much.
- Brittany

Here are my thoughts on your situation...

1.Do you have a diagnosis? It sounds like maybe you've been limbo-ing it for three years. So if there's no diagnosis after all that time, now is the time to try and get that squared away. After three years, your endo either needs to step up his/her game or be fired.

2.Has the endo done an ITT test? This will show Secondary Adrenal Insufficiency (which it sounds to me like what you have, but FYI I'm no expert).

I have a document that does a great job explaining the diagnostic testing for adrenal insufficiency. It's online somewhere but I can't locate the link, so email me if you want me to forward a copy (pissedoffpatient AT gmail DOT com).

Otherwise, this is a good link on diagnosis.

3.Is your endo someone who actually has dealt with adrenal issues? Or does their practice primarily focus on diabetes and thyroid? If they don't handle a lot of adrenal patients, you really want to see someone who does, especially since you want to have kids--I think you're going to need a higher level of care than a run-of-the-mill endo, especially with the Hashi's in the mix too.

Most adrenal patients I have corresponded with go to Mayo Clinic. You can email me and I can share some other names with you, maybe they are closer to you than Mayo. Also there are a few clinics you should avoid but I don't want to name them publicly.

(Note, if you think you'll need a reproductive endocrinologist to get pregnant, this would be a good time to visit a few and see what they say. REs tend to be more creative thinkers and they might have some ideas for you both in terms of treatment and in terms of maybe recommending other endos.)

4.Have you connected with other adrenal patients online? There are patients that know more than me (and the doctors).

Two forums I can recommend are:

MdJunction Adrenal Insufficiency Forums

Dusty's Site

5. For vitamins, steroids inhibit absorption of nutrients and I definitely have had issues with that, which is why I think I find vitamins so helpful. I would start with a good B vitamin, not just B5, but all the Bs and I would take it twice a day (you'll pee out any excess).

As for other vitamins, you always have to weigh the benefit against the risk, interactions with other medications and know what levels are toxic so you don't poison yourself. Plus take vitamins a couple hours after the steroids, don't take everything together or else the steroids will inhibit absorption.

I have found magnesium and potassium to be helpful with the muscle cramping associated with steroid withdrawal/adrenal insufficiency, but your experience may vary.

I highly recommend the Consumer Labs website. The membership is about $20 and worth every penny. They provide a survey of clinical research, test vitamins for quality and just make it easier to figure out if you should take something or not.

6. Eat a low carb whole food diet to avoid steroid related weight gain and prevent diabetes. Just FYI steroids mess with insulin which is why they can cause type 2 diabetes.

I have found some vitamins help keep insulin in check, but that may or may not carry over for you. I use Alpha Lipoic Acid and Chromium GTF.

7.When you go to Europe, carry hand sanitizer with you and use it frequently. The germs are different in Europe and the last thing you need is to add a bug your immune system has never seen before to the mix.

Paris 2006 almost put me in the hospital and that was before my current adrenal situation.

Also, tweak your dose before you go so feel human and are up for long days of sight seeing.

I hope that helps and that you find some answers!

Read More