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Tuesday, November 9, 2010

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.

Monday, November 8, 2010

Still

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

I really want to work out.

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

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

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

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

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

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




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



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

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



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

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


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



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

Saturday, November 6, 2010

Gurgle from the Sea Bed

Woke up to the adrenals aching.

Hubby abdicated the day due to illness.

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

3 is the new 13.

With a side of whoop ass.

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

3 makes me think I should start drinking.

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

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

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

Friday, November 5, 2010

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.

Thursday, November 4, 2010

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

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

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

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

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

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

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

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

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

In 17 days.

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

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

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

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

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

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

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

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

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

Are you not reading Vogue? Yeah, me either.

Tuesday, November 2, 2010

Pay, Pay, and Pay Some More

That is the motto of our new health insurance.

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

Oh. My. Goodness.

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

Or is it just us?

My head hurts.

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

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

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

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

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

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

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

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

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

Anyone here think I am a healthy person?

More like health impaired if you ask me.

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

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

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

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

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

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

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

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

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

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

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

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




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

Monday, November 1, 2010

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.