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

I heard back from the endocrinologist.

He got it.

He really got it.

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

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

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

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

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

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

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

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

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

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

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

Hanging

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Bad
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.

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?

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.