Cortisol, you bastard…

Alright.  So I’ve been toSeattle and back now for my post-surgery follow-up.  Took a whopping nine weeks to see them, so I was a little overdue, but I won’t go into that right now.  I met with the other nurse practitioner instead of my normal one, Kelley.  She’s nice, but I won’t lie.  I missed Kelley.  I grew close to her so not seeing her really bummed me out.  I also met with Dr.Mayberg and his nurse practitioner. 

The good news is that Dr.M. is pretty confident I won’t ever have Cushing’s again.  My pathology did come back positive for hyperplasia, which is what I had the first go around.  So not a solid tumor, but still cells behaving badly and making my pituitary gland misbehave.  My pathology also came back positive for the beginning stages of a prolactinoma, which is another type of pituitary tumor.  So if they hadn’t of taken it out, I would have eventually had the problems associated with that kind of tumor.  In other words, my pituitary gland was just one wonky gland.

He’s also pretty confident that I won’t have to stay on the DDAVP medicine (my “pee pill”) forever.  He thinks that hormone will start firing correctly on its own, and wants me to start playing around with my dose and seeing if it will correct itself.  I should be able to go longer and longer without peeing, and the thirst should start to abate.  I am going to play around with it this weekend when I can be close to the loo and see what happens. 

The bad news?  I’ve gained another 25 pounds since surgery.  I am so upset about it.  I have been crying nonstop.  As if I didn’t already have enough to lose.  Now I have to lose 115 pounds.  That’s like losing…a Kristen Stewart.  Bitch.  It was probably because of the high dose of steroids, but most people don’t gain THAT much.  Leave it to my stupid body to come up with any type of excuse to make me fatter and uglier than I already am.  I absolutely hate my body. I am so over this.  Once I get my hormones regulated, I *should* be able to lose weight, but I’m not going to hold my breath.  I’m afraid I’ll pass out and/or die waiting for this miraculous weight loss to happen.

Speaking of hormones, I’m deficient in nearly everything.  I got the results of my blood work today, and I am growth hormone deficient, estrogen deficient, progesterone deficient, and of course, adrenal insufficient.  I’ve had an upset stomach for a few weeks now, so I figured that was probably the case.  No weight loss, though.  The last time when I became adrenal insufficient I dropped 20 pounds lightning fast.  Not so much this time.  I keep hoping I’ll poop away the pounds, but my body hates me so that’s not happening.  On my adrenal test, it needed to be at 18, and it was at 1.8, so I have a long way to go.  I can’t go lower on steroids until my adrenal glands start working on their own – IF they ever do.  Right now I’m at 25 mg, trying to fight the upset stomach, but I won’t go lower than 20 mg for quite some time. My thyroid levels are too high so I get to come down on a lower dose of synthroid.  Hopefully I’ll be able to go off of that completely at some point in the future.  I’ll need to go to Vandy and work with a reproductive endocrinologist to get all of my female hormones in working order again, and I have to wait a month for my insurance to approve and pay for the growth hormone treatments.  And then – maybe then – I’ll be able to lose some weight.   I’m supposed to just “stay the course,” but I’m not sure how much more I can take. 

It’s so infuriating.  I do the right things, damn it.  I try to eat right, I try to exercise, and I fight like a dog for my health.  And what do I get for it?  Nothing.  Just a stupid, crippled body that won’t do what it should.  I’m currently waddling along and hurting so much.  Being overweight physically HURTS.  I’m not sure how heavier people do it.  My knees hurt, my feet hurt, my back hurts, my neck hurts.  It’s too much.  And I do what I’m supposed to do to no avail.  I hate this.  What’s next? Gastric bypass?  It’s so unfair.  I went to Target the other day and bought leggings and some maternity tops that were on clearance because I REFUSE to buy a bigger size.  I’m big enough already, thank you very much.   I had to even use a seat belt extender for the first time in my life on my flight to Seattle. I thought I was going to die of embarrassment.  Maybe I should tattoo “I HAVE CUSHING’S” on my forehead, just so people know it’s not because I eat two Big Macs at every meal.  Not that they’d know what Cushing’s was anyway, so it doesn’t even matter.

I feel like the Goodyear blimp.  Or an oompa loompa.

I’ve also developed a nasty cold that is now morphing into bronchitis.  And guess what?  Since I’m on steroids, it’s going to be hard to kick it.  So I have to go to the doctor tomorrow afternoon and see what I can do to kick this to the curb.  I can’t increase my steroids to fight the adrenal insufficiency, because then that will hinder my chances of getting rid of this infection. It’s a vicious, exhausting cycle. 

Finally, I’m afraid I may be developing another psedutumor.  The headaches disappeared for a while, but now they’re back with a vengeance, and I hear that “whoosh whoosh” sound in my left ear again.  I haven’t had vision problems yet, though, but I know they’re probably coming.  I go see my neuro-ophthalmologist November 30th to hopefully preemptively nip that in the bud before I have to undergo another nasty spinal tap. 

Maybe the light at the end of the tunnel will eventually be in sight.

Then again, maybe not. 

I don’t know what to believe anymore.

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