Sunday, May 30, 2010

A List of Three

1. I am so out of shape. Oh my Lawd. Man this sucks. I put in an aerobics DVD today and something in my knee had a full blown charley horse.

This after exercising every day last week, so I'm not at zero, you know? Blech. I had to stop and massage it out before I could continue.

It's going to take a lot to get out of this hole.

Also, I really really really want a bike. But probably won't get one since the computer is dying and will need to be replaced.

I've been looking at Zumba too because I love to dance and I'm looking for a fun workout that doesn't take itself to seriously. Only, I watched some Youtube videos and ummm, I'm not in good enough shape yet for that. However, I think I can cobble together a Youtube Zumba workout to work on at home. Maybe I can go to an actual class someday from there.

2.Why isn't the toddler napping? Anyone?

3.I did spend 1 1/2 hours deep cleaning the kitchen. And it's still not done. The dirt level is not just from me being sick, it's from the dust created while refinishing wood floors. Lots of work, much of it mildly aerobic so a bonus for me.

Friday, May 28, 2010

A Note for Megan Carter's Doctor

Megan Carter was one of the dancers auditioning last night for this season's So You Think You Can Dance and she was fat.

Quite overweight.

Yet an exquisite dancer. Clearly the mistress of her body.

Beautiful too.

But fat.

And she was cut from the auditions, partly because she was fat.

Here's the thing that upset me. It's probably not her fault. It's very likely her doctors have missed PCOS or don't understand how to properly counsel someone with insulin resistance.

Sure, she may eat crap, but so do many of her dancing peers who are thin. The problem isn't what she eats, it's that she has incredible strength and physicality, something that takes years of training hours to develop and yet her body retains its fat. That is not normal.

I have been a dancer. Nowhere near as talented as Megan, but I performed in an actual troupe at one point. You can't dance and not be fit. The strength required is immense. The calorie expenditure is insane. I remember 3 hour rehearsal sessions that were the physical equivalent of doing the polka full bore and non-stop. I loved it. Too bad prednisone and subsequent adrenal suppression made it impossible for me to continue.

Anyway, the point is, the strength and endurance required to do what Megan Carter does is akin to that of a professional athlete. There is no way she's that active and overeating any more than her thinner peers. There is something going on physiologically, something her doctors probably don't have the education to address.

A few weeks ago I 'spoke' with a woman on a message board about how to eat for PCOS. Her doctor had snidely told her it didn't matter what she ate, as long as she didn't overeat. They even suggested she could eat Snickers bars all day so long as she stayed below a certain total calorie threshold.

Utter bullshit. Of the worst kind. This kind of 'medical care' kills people. Sugar makes PCOS lethal. Restricted calories comprised of pure sugar won't produce weight loss. This is the kind of crap obese people run into repeatedly when they turn to medicine for help and I have no doubt that Megan Carter has experienced the same kind of 'care.'

So if you are Megan Carter's doctor, please check this lovely young lady for PCOS and figure out how to explain a low carb diet or find a nutritionist who can.

If you are Megan Carter googling yourself, you are a beautiful dancer as you are, however, should you ever want to lose weight, check out insulin resistance, PCOS and low carb eating.

Wednesday, May 26, 2010

Mundane Muck

Nothing much new to report here. Things are fairly calm on the health front.

Mostly I am cleaning.

Yes, I finally feel better and what do I do? Go dancing? Go to the movies? Retail therapy? Visit Disney World? Indulge my bibliophilia?

Nope, none of those (well, except for a little bit of retail therapy).

No, what I do when I'm healthy is mop the family room floor at 11pm and then do the dishes at 11:30.

No one has ever accused me of being a neat freak so all this cleaning is a little unusual. Perhaps this is an unreported side effect of Prednisone use? Hmmmm.

I haven't quite found my balance yet. I'm still doing tons of housework and not very much work work, so I need to work on that. (I did ask for and receive some deadline extensions by the way.) The way I try to look at it is the backlog is immense on all fronts so it's going to take a while to even out.

I'm also more tender than veal, sooooo out of shape. It's frustrating and I am working on it one knee lift at a time. I hate starting over.

I am tired, but it feels like regular ol' tired. The kind of tired people probably feel after a long illness. So I nap sometimes. Other times, I just suck it up. The fact I can even suck it up is amazing. There's nothing I love more than powering through!

Don't worry about things getting dull over here. There are tests and more tests coming up. The nodules, the thyroid, the adrenals are all very much front and center. This is just the lull before the medical mayhem, the eye of the storm so to speak.

I did want to tell the world that, the pill turns me into an absolute bitch. Gah. Look, I didn't have cycles for several years unless I was on fertility drugs. I am not used to being hormonal anymore. Neither is my husband who bears the brunt of my bitchery.

It just sucks. I am used to having just one personality--can't really say even tempered per se since I'm not really a calm zen-y person, but I was always the same level of Def Con 5 prior to the pill. Now, with the pill, the Def Con level goes nuclear with a side of sonic boom and electric cattle prod. I don't like it. The hubby doesn't like it. On top of that, I'm still bleeding so why am I doing this again?????????

At least the pill I'm on now is better than Yaz. That sh*t made me think ripping people's heads off was an excellent idea. I'm not alone in that experience either, but, for some strange reason, homicidal rage is not listed as one of Yaz's side effects. Huh.

Monday, May 24, 2010

Oh Happy Day

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

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

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

And it didn't ruin today for me.

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

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

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

Saturday, May 22, 2010

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.

Thursday, May 20, 2010

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.

Wednesday, May 19, 2010

Wait and See

The toddler was an angel with the specialist. All the things she did to alarm the pediatrician, did not make an appearance for the specialist.

Unfortunately, today was a command performance and the toddler did not play her part.

Not surprisingly, they did not see anything that alarmed them. Blood work was ordered and we go back for some follow-up in a few months.

There is some thinking this is all due to the toddler being a giantess in training. Seriously. How many 2 year olds do you know who are 40" tall already? Not many I would wager. And I remember how bad growing pains can be, so if that's her issue, it would offer a good explanation of what we've observed.

On one hand, I am relieved. These people see seriously sick every day and the toddler doesn't look sick to them. That is good.

On the other, talking with been-there-done-there parents, the toddler's symptoms fit a condition where all testing looks normal except for the problem. It will be interesting to see what they make of today's doctor's visit.

So we'll see. Time will tell. For the time being, I'm just not going to worry about it. All the experts say she is fine, so she must be fine. I'll keep an eye on her, but beyond that there's nothing I can do that I haven't already done, right?

I guess if things continue and the specialist doesn't see it, I'll look for a doc specializing in that one condition just to rule it out. After which point, we'll just officially label the toddler her mother's daughter, which is diagnosis enough for a lifetime.

Tuesday, May 18, 2010

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.

Monday, May 17, 2010

Illness Protocol

I have been wrestling with how much to say to anyone about the toddler. Obviously, here I've been pretty tight-lipped about things other than to say there is a problem.

But I can't do that indefinitely with family as much as I might like to.

Why am I keeping secrets?

First, I think the reluctance to say anything is a form of denial. As in, if I don't talk about it, it doesn't exist and if no one else knows, then I can pretend everything is okay. It makes it easier for me to compartmentalize in a way. If I spilled the beans, my worries would dominate the conversation which would be a real killjoy.

Second, some of my family members have not been so well behaved when dealing with my recent illness.

I spent some time this past weekend responding to questions like "What do you think I did to make you sick?"

To which I responded, "You've got nothing on prednisone."

Early on in my medical mess, people were calling me screaming "You're going to diiiiiiie and I'm going to kill your doctors if they let you." Invariably these loudmouth phone calls came in the middle of the toddler's nap time, which is just not a good time for screaming. I stopped answering calls from certain numbers for a while.

I shudder to think about the phone calls the toddler would elicit. I may have to change my number.

There's this whole emotional management facet to my family dynamics that I just don't want to deal with. I can't be everyone's babysitter, you know? It's hard enough navigating things myself let alone to take anyone else by the hand.

Given how some people have been behaving with me, I think it's understandable that I may not be rushing to say anything to anyone about the toddler.

I don't know what the protocol is here though. Am I doing my family a wrong by not saying anything now? Or is it better to wait until there's a diagnosis or a scary important test involving sedation*? (*Which parents who've gone before have told me the toddler is likely to have.)

Probably I should say something when the test is ordered. By the time a toddler needs anesthesia, it's probably best to let close relations know, yes?

However I am thinking I may try to control some of the extremism I've witnessed recently with some strong statements about what we need and don't need from everyone in terms of support.

Maybe that would work?

Sunday, May 16, 2010

Nothing Wrong Over Here, Just Ignore My Twitchy Google Finger

The hubby is one to suppress or deny attention to problems.

Everything is fine.

I'm the same way, but, unlike the hubby, reality eventually beats its way into my head to where I can't ignore it any longer.

Also, I am insatiably curious. You have no idea half the crap I research on a given day. I am full of questions and I love me some good answers.

I sat on my hands for a while with regards to the toddler and whatever is ailing her. That didn't last long. First, I needed to know what to expect from the specialist.

Second, the internet is like a Magic Eight Ball. When you're scared and worried and don't know what will happen next, Google is there always ready to take a stab at an answer.

For the first reason, I'm glad I started researching and talking to other special needs parents. Otherwise I would have been woefully unprepared for the specialist. I need the toddler's milestones which is not something I have memorized (thanks to sleep deprivation). Nor would it have occurred to me to bring that kind of info with us next week.

The second reason is bad news. We don't know what is wrong. It could absolutely be nothing. Or it could be terminal. The thing is, the internet search results in front of us are pretty awful. There's no gray area in terms of diagnosis. Nothing like asthma, where you take your meds and are fine. No. It's either she's fine or she could have a spectrum of horrible diseases known as 'every parent's nightmare.'

I just keep focusing on two things; Magic Eight Balls don't know shit and the toddler was early to advanced on all her milestones. Hell, she has even started recognizing words and understands the concepts of phonics. So how could anything at all be wrong?

It can't.

Saturday, May 15, 2010

A Convenient Distraction from More Serious Things

I think I broke a toe. Possibly two toes.

I dropped a game of Clue on my foot. One of those 'oh-thank-God-I'm-home-let-the-shopping-bags-sag-to-the-floor' moments.

Apparently, my 'moment' was conducted from the height of a skyscraper. Who knew board games were so heavy? Aren't they like, made out of paper and cardboard and shiz????

The thing hit my foot like an anvil and now I have two painfully swollen toes as a result.

For those playing along at home...for the win, it was Idiot Mom in the Kitchen with a Target bag full of overpriced Made-in-China crap.

And no, I'm not going to the doctor. So long as I can walk, it must not be that bad, right?

Update: The Clue game is a wooden box, not cardboard like I thought. Which kind of explains things.

Friday, May 14, 2010

Not What I Wanted to Hear

Today I dragged the toddler to the ped against my better judgment.

I didn't think anything was really wrong. It was probably something she would out grow, right? You know how kids are; funky and quirky and doing weird stuff all the time, just to keep us all on our toes, right?

I thought the ped would tell me as much and I would look like an over-functioning fruitcake mom.

This was my fondest, sincerest wish today; to be deemed a nutjob with a perfectly healthy baby whom everyone would pity and pray she found a good therapist someday.

My wish didn't come true.

Instead we got a referral to a specialist.

Who squeezed us into their schedule for early next week.

Which is good, since the ped said, if the appointment was months from now, to let them know so they could intervene and get us in sooner.

A despair of disbelief washed over me in the ped's office. "Are you sure?" I asked.

"Yes," they said. "This is not normal."

I am a scared momma today.

Hashimoto Hell

Here's the thing that bothers me about the whole thyroid deal-io.

When you are dealing with asthma, no one is complaining that their meds don't work or that the doctors don't listen (okay, there's me, but I am a very, very small minority and I have horrible karma. The vast majority of asthmatics are off living their lives not whining on the internet, agreed?) For such a common illness, there aren't that many patient bloggers with asthma from what I can find. No one is writing books entitled 'what your doctor won't tell you about asthma' advising things that run counter to current medical training.

Even alternative treatments aren't really big with asthma, mostly because allopathic treatment is so effective compared to herbs. For example, mullein, an herb traditionally used to treat asthma, has never been clinically studied (to my knowledge) so if you are looking for natural treatments for asthma, guess what? You're a guinea pig using an herb based on the cumulative lore of some witch coven from the 1300s. Have fun! Let me know how it works out for you!

The thing is, Advair and Symbicort etc... work. They work well.

Asthma is a disease that does well with mass produced solutions. Just take your inhaler and you're pretty much set. It's very one-size-fits-all.

Thyroid problems are not.

On the one side you have the endos, on the other a lot of really unhappy patients--all of whom seem to have taken to the internet to complain.

"Take iodine," say the informed patients.

"Don't take iodine," say the doctors.

"Take selenium," say the informed patients.

"Selenium what?" say the doctors. "Why?"

This is just the tip of the iceberg. There is not one single thing about treating thyroid problems that patients haven't found a bone (or three dozen) to pick. And then there are the patients that disagree with the rest of the patients, which is really confusing for newly diagnosed patients like myself.

So the big question is, who to believe? Who is right?

The patients just aren't happy. This is a huge red flag for me.

When I emailed my relative with Hashimoto's to inform her I had 'joined the club' she responded with a sardonic 'Good luck.'

Do you know what this all says to me? Treatment sucks and doctors don't want to talk about it. The medical paradigm is out-of-step with the patients. Enough so that patients are taking things into their own hands. Always a bad sign.

Happy patients don't spend hours on the internet grousing. They don't write books to save others the hell they went through. They don't blog. Or start message boards or sign up on Facebook. They just go live their lives.

So it seems we have a significant demographic that is under served and medicine doesn't care.

Yay. Just what I always wanted. More weird medical crap to slog through. How do I get so unlucky?

Thursday, May 13, 2010

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.

Wednesday, May 12, 2010

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.

Tuesday, May 11, 2010

Medical Things I Don't Have Time For

I go to the doctor all the time. All. the. time. So you would think there would be no organ left unturned.

Well, you would be wrong. In reality, chronic illness leads to chronic neglect of things that are important but not pressing. Here, I made a list to prove the point.

1. The dentist. Partly because I don't like my dentist because they keep pressuring me to have my wisdom teeth out. They probably do need to come out, but anesthesia is kind of not something I want to deal with right now. Hold the lectures please and just clean my teeth. If you can't hack it, then I'm not coming in. Sorry.

I should really find a new dentist.

2.Pap smear--although the breast lump meant I got one, otherwise I would've skipped it.

3. GERD. Every three months, my father goes for an endoscopy to be sure he doesn't have esophageal cancer yet. You would think I would make more of an effort, but you know what? I can only go to the doctor so much, both mentally and physically. Between infertility, pregnancy and the current health hell hole, I haven't had an endoscopy in over 6 to 8 years. Which is probably not good.

The one follow-up appointment I had after having a baby, the doctor didn't show--they were out of town and due to some admin snafu, I was never informed about the need to reschedule.

I do take my GERD meds though and low carbing helps the heart burn.

4.Asthma education --I've rescheduled once and am about to push it out further. I don't have the physical stamina for it right now. Driving there, toddler wrangling etc.. is just too much right now. Thankfully, it's not urgent.

5.Weight loss clinic--I've given up on it for now. No time to dither with even more doctors. Especially one who already thinks I'm nuts. Can you imagine what s/he would think of me showing up and saying 'hey, I have adrenal suppression?' I don't have the emotional energy to deal with someone who thinks I need therapy instead of asthma medications.

Also, they weren't helping me very much (not their fault, just the limitations of science when it comes to weight loss). We also had some significant philosophical differences. They believed in calories in = calories out, but I know from experience that it ain't that simple. Further there is some decent science (in my humble opinion) debunking calories in= calories out.

More importantly, they weren't running the lab work to check potassium and magnesium levels which is what I really needed. So, like whatever, dude.

Besides, I can't even follow a 'diet' right now. I'm either not eating because I'm not hungry, or eating sugar because my blood sugar is dropping like a stone. There's no room for strict adherence to anything food-wise right now. Maybe when things stabilize, I'll try again.

Monday, May 10, 2010

The Accidental Anorexic

So I'm crashing today. With a major headache. Feel like absolute crap.

Then I eat and WOW, amazeballs, I feel soooo much better.

The wheels start turning. Hmmm. What have I eaten today?

1.Sugar free chocolate muffin for breakfast--200 calories if I'm lucky.

2.Another muffin for lunch with a 1/2 cup serving of cottage cheese (which I could not finish)--350 calories if I'm lucky.

3.Snack: Some Smarties since I'm feeling so crappy, chased down with Advil for the throbbing sinus headache.

4.Dinner is a bust--can't work up the appetite to eat the low carb taco salad I've made. So I have the only things that sound good to me; string cheese and 4 strawberries with 1/2 cup dark chocolate mousse (naturally low carb). Somewhere between 350 and 400 calories.

Suddenly I feel better. Imagine that, you gotta eat if you want to feel good. Who knew?

What is going on?

Ketosis can kill appetite pretty well, but there's no way I'm in ketosis--haven't been strict low carbing due to the blood sugar although I probably do come in below 100g of carb a day. Maybe I should check the ketostix just to be sure? Eh, screw that, they're expired.

I don't know what the deal is, but I think I need to pay more attention to what I'm eating and get above 1000 calories a day, whether I'm hungry or not. For some reason, I'm back to where nothing sounds good, which mucks up meal planning as I can't decide what to make because, in reality, I would rather not touch food ever again. It all sounds like vomitus to my stomach.

Worse, I'm oblivious to all of this. I'm not hungry. I just feel like crap, my body isn't even telling me to feed myself.

Why does every itty bitty little thing have to be such drama? For the millionth time, I just want my life back. Is that too much to ask?

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.

Saturday, May 8, 2010

Doctors Blame Fat People

I had a recent run-in with a doctor who was desperate to find something wrong with the way I ate.

So they launched into an attack on the ground turkey that is a mainstay of my low carb diet. Okay. Fine. Well, what am I supposed to eat exactly? I try to avoid a lot of red meat. Chicken is dry and gets boring, but ground turkey is cheap and versatile. I use it a lot.

Let's get this straight.

The doc was a specialist.

Who agreed with low carb eating for my situation.

But was seriously admonishing me for eating ground turkey.

Why?

Because it had too much fat. Ergo I was fat because I ate ground turkey. I sh*t you not, this was the logic.

The medical student cowering in the corner, bravely cleared their throat and said, "Actually, no. It's 97% lean."

"It is?" said the doc, taken aback. I'm sure the med student had been marked down -500 points at this point. Poor student. I hope they didn't beat him.

"Yeah," the medical student and I both chimed in together.

"Well," the doc shook his shoulders, irritated, "You don't know what is in it so you shouldn't eat it."

And that was that. Patient schooled...or was I? Either way, I'm still eating ground turkey. The specialist can Suck. It. I mean, seriously, you're going to criticize me for that?

It amazes me how often my food choices are attacked or questioned in a medical setting. Doctors like to make weight solely a personal responsibility issue and negative fat bias is pervasive. I'm fat therefore it must be my fault, end of discussion.

It never has anything to do with all the prednisone or the PCOS and that medicine doesn't know how to deal with either those issues really well in my case.

No, it can't be the science that is flawed. It has to be the fatty's fault.

I've been told I ate too much.

That I don't know how to count calories (ah, yes, the 'you're too dumb to lose weight' argument) and that food labels are wrong so even if I could count, I'm still wrong. Man, us fat people just can't do anything right, can we?

I've been asked if I drink juice after sharing I follow a low carb diet.

I've been told to join TOPs and Overeater's Anonymous.

I even had a doctor who related obesity back to a history of abuse which led to emotional eating. This theory was applied broadly to every patient according to the clinic (so why a diet and not therapy????).

Rarely have I experienced relevant, quality health care when it comes to my weight. I can count those doctors on less than one hand. Which is saying something considering how often I see doctors.

It also reminds me of this post over on Dr. Grumpy's blog where a doctor, flummoxed by a patient who isn't losing weight, demands they write down everything that goes in their mouth. Because they must be doing something wrong.

I commented on that post that I believed, a 100 years from now, future scientists will not look back kindly on the so-called 'science' of weight loss and obesity doctors espouse today. I'm willing to bet the only ones who will stand the test of time are those who are low carb literate.

Fortunately, I'm pretty sure it won't take 100 years to debunk the idea that ground turkey causes obesity. If it does, there's really no hope for any of us.

Friday, May 7, 2010

Self Care for Steroid Withdrawal Symptoms or Adrenal Suppression

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

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

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

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

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

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

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

I am never without sugar and a protein based snack.

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

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

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

3.I napped. A lot.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thursday, May 6, 2010

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.

Gassing the Anesthesiologist: A Story fromt the Wayback Machine

I went into labor on a Friday morning. Rolled over in bed and 'pop' went my water.

It was a slow labor. Nothing much happened after that. Not even Pitocin could make the baby get a move on, although I did manage a vaginal birth. By the skin of my teeth--they actually prepped me for an emergency C section but backed off when the baby's heart rate recovered.

So upon being admitted to L&D, they like to start an IV and make sure I haven't been hooking with the wrong guys. (It seems in our society pregnant = hooker with the way they test and test for every STD on the planet.)

An anesthesiologist strutted into our room, proud as a peacock at the Playboy mansion.

He couldn't find a vein.

Now, I can be a hard stick. Sometimes. And when it goes badly, it really goes badly (the same can be said of the asthma too). Usually I like to lean with my arm hanging down for a good 10-15 minutes before a stick. This often does the trick, but there was no time. The anesthesiologist was ready now and it was all about him.

I am pretty good about multiple sticks. Heck, I did IVF, I gave myself shots. I'm no delicate flower. So I'm not squeamish, but I don't like to look and I like a break after 10 tries or so to just kind of breathe for a second. I told him to do what he needed to do and he rooted and rooted and rooted.

I bit my lip and refrained from sharing that the lab at the OB's office got me on the first try every time for the entire 41 weeks of my pregnancy. Didn't want to give him any performance anxiety.

The anesthesiologist finally got a vein, which promptly collapsed and just a mere trickle of blood hit the test tube. "I'm not sure it's enough for the lab, but I'm done," he said with a sigh of aggravation. I saw the tube, it wasn't even 1/5th full.

This has happened before. I've gone through battalions of nurses, had doctors try only to give up, had to drive to second locations to give other staff a stab at me. Time record is an hour and a half. Stick record: 17. Like I said, when I'm a bad stick, I'm the stuff of nightmares.

From there the anesthesiologist turned to inserting the IV, which he got in, but in a very bad spot. The IV was painful, unusually so, and I could tell I was going to have problems with it.

I asked for it to be moved and was told "No, you're too hard a stick. By the way, you need to get your moles checked."

Kind of an ass the anesthesiologist.

I labored for the first day, keeping my arm ramrod straight. The needle was in a spot where I couldn't flex my arm without compromising the IV. This made labor fun! Not.

Eventually,it became apparent that I had made no progress despite 8 hours of Pitocin. It was time to figure out how to manage the rest of what was clearly going to be a long slow labor. I hadn't had any pain meds at this point, but I needed rest so we asked for an epidural.

Whaddaya know, but the same anesthesiologist comes through the door, all full of himself. The usual epidural prep ensued and, as I leaned over, waiting for the needle to slide between my vertebrae, I farted.

In the anesthesiologist's unmasked face.

Total accident. I was mortified.

But there was an undeniable comedic justice in the moment.

Unfortunately, it didn't smell nearly as bad as his ego deserved.

As it turned out, I was right to be concerned about the IV. It 'burst' and filled my arm with fluid after the birth. I was so tired and preoccupied with the baby being in the NICU, I didn't notice my arm swelling up like I'd been bitten by a rattlesnake. By the time the pain made me pay attention, my arm had doubled in size. When they removed the IV, there was so much pressure, fluid shot out like I had a water gun implanted in there.

The arm hurt for the next 9 months and was weak with limited functionality. Add in my other bum wrist, and breastfeeding was a challenge. I count on my left to be the strong arm, but there were many many times I was worried about it collapsing as I lifted the baby. It did heal, but left a pronounced lump in my arm which I was told is a scar.

I never complained and I regret it. He was so arrogant and so uninterested in my comfort, he really needed to be taken down a peg. Also, he was still in training (resident) so I would have been doing a kindness to every other woman he touched after me.

Oh and the RN who inserted the new IV? Got me in one stick, in a good place that didn't bother me at all.

Wednesday, May 5, 2010

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.

Tuesday, May 4, 2010

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.

Monday, May 3, 2010

The Good, The Bad, The Ugly

Good

Hubby brought home my little desk for the family room--it has been in storage pending completion of this phase of our home reorg. So I now have a place to put my printer and laptop as well as drawers to store office-y type stuff. Finally.

I should take a picture. The desk is darling. It's petite, perfect for my tiny house and an antique-- my stepmom gave it to me as a gift. A real bright spot.

BadBold
I haven't heard back from my doctor. I'm disappointed and not happy to be on my own. She may still call, it has happened before.

If not, I will try to call one more time tomorrow and perhaps make a concurrent urgent appointment with the Primary Doc who probably wants nothing to do with me, but there is increasing discomfort in my stomach and back, which is scaring me.

After that, what do I do? Where do I go? I have some prednisone left over. I guess I could try a few days at 5mg and then go to alternate day until it runs out. I hate to do that though, but I'm beginning to feel desperate.

Ugly

My father called and shared he hopes my health problems aren't going to shorten my life.

Not real smooth. Nor positive. Or accurate as I don't think I'm that kind of sick. Also, the phone call woke me up from a much needed nap.

Well, Crap, I Am So Lame

I called the doctor today about the steroid withdrawal not going well. Of course I did it after I hit the wall--we are in the midst of a total home reorg and remodel. We just moved into our new family room yesterday and this morning I was cleaning up toys. Nothing heavy duty, but too much for me.

So I'm shaky, nauseated, short of breath and am fantasizing about pulling a Rip Van Winkle. Up until this point, I was thinking, 'I'm good. I'm going to be fine. I feel good.' You know, the usual pep talk bullshit that has very little to do with reality.

Although I actually do feel pretty good...right up until I hit the wall. Up to that point, I'd been dithering. Should I call? Should I wait? How did I feel? I couldn't decide until the shaking started.

On the phone with the doc's secretary, tears started to come from out of nowhere, I had no idea they were there. Ugh. I hate crying in front of other people. I avoid sad movies as well as sad books precisely because I'm a sap and I don't want to cry like a big fat baby.

I managed to get out the basics.

I don't feel well. I had the stomach flu last week which made things worse. I'm below baseline in what I can do. If we're going to do any testing, can we please do it on Thursday so I don't have to go through another weekend like this? Please, I need to be able to function.

I need to cook the food in my fridge before it all ends up in the garbage.

But for now, I have no choice but to rest.

Grudge of the Stomach

Am I alone in being unable to eat certain foods after having the stomach flu? As in I haven't had a Little Debbie cupcake since sometime in the mid 80s (and am all the healthier for it). Chicken wings are now gone, never to return.

This latest bout wiped out my entire palate and food repertoire. Nothing sounds good. Everything makes my gut clench. I'm going to have to come up with a whole new recipe rotation--which is a Herculean task given that it took me about 2 years to develop the current repertoire.

As a result, we've been living on take out for the last week because it's either that or we don't eat. Plus, energy for cooking has been low.

Except all the take out places manage to screw up something on the order. Every. Single. Damn. Time. Does that happen to you? There's always something wrong, major or minor, and I'm about to Lose It and spray spittle at some poor underpaid restaurant manager.

Only not really, because I'm never the one picking up the food, the hubby is. Which means I end up leaving nasty reviews on various review sites around the web instead. I'm currently considering some letters full of choice words to franchise headquarters, because I really want those Asiago croutons on my tomato soup from Panera's, damn it.

How is it when I dine in, my order is fine, but take out is always a hawt mess? Crappy quality control anyone? Gaps in the operation procedures? It's not rocket science or, you know, anything close to High School Algebra, which most restaurant employees are probably trying to muddle through--food orders have to be easier than that x y shit.

The hubby will check the order...if I remind him. If I don't, he won't. And yes, he hears about it, but the hubby thinks I'm cute when I'm ranting so he never takes me seriously.

The thing is, think about why people rely on take out. Because they are busy or sick or hate people or are Sandra Bullock. So chop chop restaurants of America and get your shiz together because right now your food is all I can stomach and I have a family to feed.

Gimme my croutons or else your online rating is going down big time. For realz.

Sunday, May 2, 2010

Doctor, Heal My Big Breasts Please

That title got your attention, didn't it?

We are talking about breastfeeding today.

There is a great post on Breastfeeding Medicine about how most doctors don't know jack about boobies and why they are such jerks when patients challenge their authority. Really insightful post, on multiple levels.

Note to medical professionals: Learn to say "Let me think about that and get back to you" vs. the passive-aggressive destruction of the patient's credibility which does no one any good.

Also, please learn something about boobies. Please stop failing new mommas.

Breastfeeding is another medical orphan. Lactation Consultants can't prescribe. OBs and other physicians don't know a boobie from a hole in the ground and why would they listen to the Lactation Consultant? They aren't even doctors. So, duh! Clearly subhuman and not worthy of attention. Off with their heads!

When all you want to do is nurse your baby, butting up against a complete lack of knowledge compounded by asinine medical hierarchy is incredibly frustrating. Especially when you can't even find time to take a shower or sleep--anything more complex than that is confounding.

How do I know?

The toddler was in the NICU for a few days after she was born. The antibiotics we both received meant we contracted thrush.

I was hardcore about breastfeeding. Anything I could do to improve her health, I would do it. I know all too well how precious health is. So I breastfed with bloody nipples and pain unlike anything I have ever known.

I thought this was just what breastfeeding was like in the beginning. I didn't really know anything was wrong so I sucked it up, bit my lip and kicked the coffee table every time the baby latched on as a way to distract myself from the pain.

We were eventually diagnosed with thrush by a lactation consultant. I needed medicine.

So I called the OB who, by virtue of feeling up my ta-tas on an annual basis, must know something about how they work, right? Wrong!

The OB gave me a prescription for vaginal yeast cream.

Uh, no. Doctor FAIL.

There are no nipples on my vagina and I distinctly recall talking about my nipples. Nip-ple. N, I, P, P oh, forget it, here, let me just take off my shirt. See? These things. Yes, those. No, not down there. Up here. Good boy!

By some miracle, I finally got the OB to actually listen to me and prescribe the Nystatin cream I needed along with some Diflucan pills.

But this was not enough. You have to treat both parties when it comes to thrush.

So not only did I go around in circles with the OB, I had to dance with the pediatrician too.

Again, I thought, these guys are baby experts, right? Surely they know something about breastfeeding.

No, not really. But they did do as I asked and gave me a prescription for liquid Nystatin for the baby.

It took two rounds of medication to kick the thrush. Very aggravating and I had almost no medical support because none of the doctors knew a damn thing about boobies.

So please, doctors of the world, get some continuing education in boobies. The nursing videos from the 1980s are a hoot--kind of like seeing Michelle Duggar naked. Plus, there will be big boobs. What's not to likey?

My fondest wish would be that pediatricians expand their practices to encompass breastfeeding. Meaning only ONE doctor visit to deal with thrush. Why shouldn't peds be in charge of an infant's food supply?

Saturday, May 1, 2010

Where's My Cheerful Pessimist Shirt?

I used to have this t-shirt with a picture of Eeyore and the phrase 'cheerful pessimist.'

Cheerful pessimist. That's me. More often than not. Except, lately, not at all.

This continual optimism where I keep thinking I'll be fiiiine is driving me nuts. I don't know where it's coming from. It's so...not me. I'm more Eeyore than Piglet. More Rabbit than Pooh.

So I go tutor today. I rock the tutoring session. The family loves me. The kid is blossoming. It's pretty much tutoring nirvana all around.

Happy, happy, joy, joy, right?

Right. Awesomeness.

On the drive home, I think, "I feel pretty good. Maybe this is going to go well after all."

I get home, walk in the door and suddenly my grip on the kitchen counter is the only thing keeping me upright and I'm panting like I've just run a marathon.

Total bummer.

If you need me, I'll be in bed.