Boy was I mistaken. I am three years out, four months post-op from my second pituitary surgery and I’m the fattest I’ve ever been and so miserable and frustrated. I am down to 20mg of steroid but apparently it’s still too much because I am continuing to gain more and more weight. But it’s not enough because I still have minor symptoms of adrenal insufficiency and no appetite. My doctor in Seattle is apparently leaving and no one at his office has bothered to tell me. Hell, no one at his office bothers to follow up with me. My care has taken a nose dive since I was randomly reassigned to another nurse practitioner instead of the one I really love. This one just doesn’t care; I’m convinced. If she does, she has a terrible way of showing it.

My doctor at Vanderbilt acts like he’s not a doctor and defers to Seattle all if the time. Are you not an endocrinologist? Fix me, damn it! The only doctor that gives a damn and understands how miserable I am is my ENT. I’m lucky to have him in my corner but he’s not an endo so he can’t help me with the rest of my issues. I may be a beached whale by the time this is over but at least I’ll have a working nose.

I can’t fit into any of my clothes. I am spending so much money on prescriptions and doctor appointments that even if I wanted to shop at the fat girl store, I can’t. My entire wardrobe consists of leggings and tunics because I can’t fit into anything else. I had to ask for a seatbelt extender on one of my recent flights for the first time ever and cried until I landed. The looks I got shattered me. I know I shouldn’t care what others think, but I do.

I’m finally going to start growth hormone replacement next week but I’ve had mixed reviews from fellow Cushies and doctors. So I don’t want to get my hopes up that this will be the final puzzle piece that will click into place and help me regain control of my body.

I’m just not okay with this at all. I truly believe at this point that I shouldn’t have had the second surgery. I foolishly thought this would be it. I’d be fixed. But that’s not the case. I’m not sure I ever will be and I’m really tired if fighting this fight.

Yep, I had one again.  I had one shortly after I returned to work after my first surgery, too.  I have to relearn my body and my symptoms all over again.   I had always thought vomiting was the main indicator that you were in adrenal crisis,  but Cushies be warned – vomiting isn’t your only clue.   Vomiting is a major, glaring symptom,  yes, and usually the last one to show up.  But you can catch the crisis before it happens by paying attention to other symptoms.

For me, it was an upset stomach, which I did have the first time I tapered off with my first pituitary surgery.  For a few weeks before the crisis happened, my stomach was super upset no matter what I did, and I lost 20 pounds rapidly.  Plus, I was really tired and fatigued.  So when I started vomiting incessantly after a night out with my then-roommate, I knew what it was immediately.

But this time, with the upset stomach, I blamed it on all of the medications I’m taking.  When you put so much stuff into your body, you can’t really blame it for being in a tizzy.  I was tired, yes, but not so tired that I couldn’t get up to go to work.  I had the shakes, where my hands shook like leaves, but I thought maybe it was just me jonesing for a little bit more steroid, or maybe the thyroid medication I’ve been taking.  I’ve lowered my dose because my TSH levels were too high.

But on Friday at work, I was feeling REALLY crappy.  I’ve been sick with a nasty sinus infection, and a bacterial infection to boot.  I added another antibiotic to my already overloaded pill schedule, and thought maybe the upset stomach was due to that, too.   On Friday, though, it seemed to get worse.  I started sweating profusely, and I’d been doing that, but Friday it was unbearable.  And then I started shaking so bad that I couldn’t hold my pen in my hand.  My stomach started cramping, but it was around lunchtime, so I figured I was hungry.  I had just sat down at the table in the break room when the first wave of nausea hit.  I went running to the bathroom and I barely made it.  Luckily I had grabbed my cell phone, so I was able to text my co-worker and ask her to run to get my steroid.  I took a 40mg “stress dose” and kept it down,  but the shaking never ceased and I had shortness of breath.  Although I wasn’t vomiting anymore, I still didn’t feel “right” so I called Dr. L.’s office.

He got a little perturbed with me, in that “I told you so” kind of way, because he’d warned me about returning to work too early.  But honestly, I DID feel well enough to go to work.   I went to Seattle and back on 20mg of steroid just fine – well, except for the upset stomach.  I went back to work the day after I got home from Seattle, and everything was still fine.  I was a little tired, after being off for nine weeks, but other than that, I really had no warnings that I was in crisis.

Luckily this time a doctor in the Vandy ER saw my chart after I was triaged, and knew that I was in serious need of medical attention.  I didn’t have to wait very long at all to be seen by a doctor, but they were ridiculously crowded, and I still ended up on a gurney in the hallway, just like last time.  The on-call endo came to see me, and the ER doctors followed the instructions Dr. L. gave me to a “T.”    They admitted me for observation because after the first 100mg of steroid, I was still shaky and having flank pain.  They did an ultrasound and checked my urine, but there were no kidney stones to be found this time.  I was really scared I was going to go through kidney stone drama again, but thankfully this time I avoided that.  They gave me the good stuff in the hospital for the pain — Dilaudid.  It made me itch to death, but it’s totally worth it for the chance to just sleep with no interruptions.

So now I’m back home, and tapering down again.  Today I take 70mg of steroid, and then tomorrow I take 40 mg – 20mg in the morning and 20mg at night.   I’ll stay on 40mg until my Vandy at endo thinks it’s safe to go down, and then I’ll probably go down 5mg at a time so as not to shock my body.   The theory right now is that I had an excess of steroid after I was on the 90mg of steroid post-surgery, and that I tapered down easily from 90mg to 20mg because my body didn’t realize it wasn’t getting as much.  But when I got to 20mg (and when my problems started) my body finally caught up and was literally  like “What the hell?”   Hence the adrenal crisis.

The scariest part is that I didn’t feel stressed AT ALL.  Work was going fine.  So it’s a little scary to me that me feeling not too stressed can still be my body stressing out.  I just have to REALLY learn my body.  I thought I knew it well – and I do for the most part – but this just threw me another curveball in this crazy recovery.

Adrenal crisis is not fun.   I am definitely getting a medic alert bracelet now, and my mom is  making some cards to keep in my wallet and car, and to handout to a few co-workers so they know exactly what to do if it happens again.  I really hope it doesn’t, because feeling your body shut down on you system by system is scary as hell.

I hope this gets in control soon.

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.

*breathe*

See?  Honest.

This is going to be a ranty, ragey, throw my middle fingers up in the air kind of post.   I am not happy right now.  But you’ve all been warned time and time again, so if you’re still reading, you asked for it.  Actually, on second thought, I’m turning this into a “Things They Don’t Tell You on Google about Cushing’s” blog post.  I’ve learned a lot about my body and how it works the past few weeks, believe you me.   Disgusting horrible things that I thought I’d never learn until I was 80.

But when you’re 30 going on 80, shit happens.  Literally.

When you’re in your pre-surgery meeting, these are some of the things they don’t tell you will happen.  Thank you to my Cushie buddy Maya for helping me list these out and making me laugh when all I really want to do is break down and cry. We’ve determined they should do a Cushing’s reality show on TV since reality shows are all the rage.  They should pay us to go through this.  The things we’ve witnessed and experienced would gross out any participant on Fear Factor.  We’d be millionaires, and then we wouldn’t have to worry about crap like FMLA, and oh, I don’t know, health insurance. You know, things you shouldn’t have to worry about but have to because you’re Amurican.  That’s a whole ‘nother blog.  UGH.

Anyway.   On with the things Google/WebMD/Wikipedia/MayoClinic/WhateverSiteYouGoogle does not tell you about recovery from Cushing’s.

1.  Your options for Halloween costumes will be limited to the following:  Oompa Loompa, Marshmellow Man, a Twinkie, a whale, an M&M, Humpty Dumpty, the Hanes Apple from the underwear commercials, or something very round, like the Earth.  Because you are as big as it.

2.  You will take bathroom acrobatics to a whole new level since your body expands and you can no longer perform functions you once did as a normal-sized person.  You will amaze yourself – and yoga instructors – with the amount of flexibility you can somehow conjure up.  Have you ever tried to use the bathroom while holding yourself up with one arm while reaching around the whole universe (read: your very wide ass) just so a tiny corner of toilet paper can reach the target?  No?  It’s fun. You should try it sometime.  *rolls eyes*

3.  You have to behave in the drug store and not rip open the sitz bath that you desperately want to purchase and sit in in the middle of aisle three.  Plus, you leave one hell of a wake.   *tap tap into microphone* Clean up on aisle three, clean up on aisle three . . .

4.  You cannot take your clothes off in the grocery frozen food section when you have a menopausal hot flash.  It’s frowned upon in the U.S. and it is a misdemeanor.  Sorry.

5.  If you’re lucky enough to get a CSF leak post-surgery, you get the luxury of swallowing fluid down your throat – or shooting it out of your nose 24/7.  I won’t describe what it tastes like.   Let your mind wander.

6.  You will be hairy and hungry on steroids, but not horny.  Need a pituitary gland for that.  But in the meantime, enjoy tweezing and plucking and waxing and shaving while eating a hot dog.  Multi-tasking is key.

7.  Cushing’s will open you up to an entirely new level of bodily humiliation.  You know that dream where you are standing in front of a crowd naked?  Yeah, we live it.

8.  Yes, I’m fat.   No, I did not eat the entire McDonald’s last night for dinner, you asshole.

9.  When you see a skinny girl eating a cheeseburger, you will want to punch her in the face.  At least you can blame the steroids.

10.  You will drink protein shakes formulated for 80 year olds and pop more pills than a geriatric patient.  In other words, you’re starring in The Curious Case of Benjamin Button except you’re nowhere as rich or as good-looking as Brad Pitt.  You’re not even 40, and you’re a geriatric patient. Grunting, groaning, popping pills, and downing Ensure like it’s a jager bomb.  Thumbs up!   At least we don’t have dementia?  (Yet.)

11.  I HATE THE PEEING.  It’s like “Wtf, girl parts?”  You know when dogs fart and look at their butts like “What was that?”  That’s kind of me.  I can’t stop peeing.  I see the little caricature of the stick figure with a skirt on and my bladder is like “WHEEEE!!!! Can we? Can we? Can we?  Can we pplllleeeaaaassseee go pee?”   It’s not like I have a choice. If I don’t go running right then, we’re going to have another cleanup on aisle three.   And then, you think you’re done, and you go to clean up (because that’s one body part you may be lucky enough to actually reach) and you pee on your hand because apparently your bladder and kidneys have found more liquid they think you should pee out.   It’s a never ending fount.  How rude.   At least you get different variations of the pee pee dance when you’re standing over the toilet and trying to drop your pants in time.  I’ve found that my favorite variation is a combination between the Macarena and the Twist.  It depends on which pants I’m wearing at the time.

12.  Your only attire options are leggings and men’s sweatpants.  Don’t even try jeans, unless you have a gun and/or a tub of Ben and Jerry’s around for therapy afterward.  I’ll take some Phish Food, please.

13.  You’re so big and fluffy that you probably float like a bar of Ivory soap.  Maybe I can get a part-time job as a flotation device on an airplane.  ”Here, cling to me, passenger!  I swear I float!”   There’s always a silver lining.

14.  You grow boobs.  I won’t complain about that one.

15.  You will cry over things like warm Dr. Peppers, and the most glorious day of your life will be when a bloody booger the size of Texas comes flying out of your nose.  I’m still waiting for that day, but I’m sure you’ll get a blog about it or at least a Tweet or Facebook post.  I’ll keep the TMI coming.

16.  Things like drainage will excite you, fascinate you,  and disgust you.

17.  You’ll get scar tissue in strange places, and you’ll have to see weird doctors you never knew existed.   You’ll have to have weird subsequent surgeries to fix weird subsequent problems  you never realized were possible, like surgery to fix your sense of taste and smell because scar tissue is going to take them away from you.   I will only agree to this surgery after I’ve lost that 100 pounds I packed on.   I mean, you won’t want to eat the Krispy Kreme donut if you can’t smell or taste it, right?  #logic

18.  Two words: baby wipes.  Oh, and never leave home without Kleenex, hand sanitizer, and twenty bottles of pills.

19.  Your muscles waste away no matter what you do.  It’s not enough that you’re fat.  Let’s take your muscles away, too.  So when you sit down on the sofa, you have to get this little swinging, rolling, running start to heft yourself off of the couch.  Oh, and that’s when you groan like an 80-year old.  It’s awesome.  It really is.

20.  If you have issues with having a big vat of biscuit dough for a stomach, get a cat.  They love the extra cushion. At least mine does.  You should see his eyes cross when he gets to make biscuits on my gut.

In all seriousness, and as Maya said, if we can’t laugh at ourselves we’ll go insane.  We are all we have.  So this is mainly what this is.  I’ve had a very bad, emotional day and I am pissed off as all hell at each and every one of my doctors, and I have to laugh in order to not cry my way straight into an adrenal crisis.  I’m trying to remember they mean well, but I’m also trying not to strangle them, too.

I know as a taper off the steroids, and live my life right, as I’ve always tried to do, that the weight will come off.  And that things will correct. But it’s so hard to see the forest for the trees.  I just see this big triple number staring me in the face, and it’s a hell of a lot of weight to lose, but I know I can do it.  I’m going to do it.

Thanks to Maya for the Facebook chat and for making me laugh my butt off.  I really needed it.   She helped me come up with this TMI list, so blame her.   In a year, I’ll be heading to Colorado to hike up a mountain and scream “#$(#)$* all” at the top of my lungs, perhaps even naked if I’m 100 pounds lighter.   She’s looking forward to it.

Thanks also to Cherish for talking me out of the coconut tree again, meeting me for coffee, and reminding me that life is good, despite all of the crap that it seems to throw our away.   Trinity, too.  BBM was a bad invention and she’s cursing its existence at this point.  

Brutal.   This is all I can come up with to describe this recovery process.   People keep commending me on my mental fortitude, but as I sit here sobbing and trying to type through tears, I’m kind of confused as to what mental fortitude they’re seeing.  I’m scared to get too upset, so it’s muted crying at best.  I let out a little sob, my cat looks at me like I’m a few cards short of a full deck, and then my nose drips a little bit, and I taste the crap in my head, and I get disgusted all over again.   I can’t quite have the complete and total meltdown of which I regularly fantasize.  It’s probably best, seeing as the last thing I need is to get so upset that I overstress my body and have an adrenal crisis.  I was borderline last night.   So nauseous that I couldn’t sleep.  I can’t take anti-nausea meds anymore, and I’m still dealing with this #$()#*$#)*$#)*( CSF leak/rotting fat graft issue, so I’m nauseous 24/7.  Homeopathic remedies do help, but seeing as I can’t take them 24/7, the nausea just comes right back.

The newest little development in my post-Earl life is menopause.  High five!   I’m thirty and going through menopause. It’s awwwweeessssooommmeee.  I totally feel for my mother now.  She tried to describe what it was like and now I know.  For starters, there are lots of cute boys in this world, many of which I am not usually prone to ignore.  I like boys, especially cute boys.  If they have guitars or harmonicas, even better.  But when I don’t even notice them around me?  That’s a problem.  But considering I’m not even four weeks post-having-crap-plucked-out-of-my-brain, that’s not a big issue.  That will come back.  Again, there are too many cute boys in this world to ignore.

However, the hot flashes can go to hell.  Oh my God.  It’s September, and I should be living with my windows up, and fresh air circulating, enjoying the two days of autumn that Tennessee gets each year.  But no.  I’m sweating profusely, running the air conditioning 24/7, and trying not to strip naked and sit in a tub full of ice cubes.  Especially in the middle of the night.  It’s all I can do to try and keep some clothes on.   My dad is my roommate right now, so I’m sure the last thing he needs to see is his 30-year old daughter in all of her glory sweating profusely while going through menopause 20 years too soon.

Whatever hormone is needed to curb hot flashes, I need it immediately.  My mom said something about an herbal remedy. Black cohash or something.  I need an injection.   I am so sorry to all women out there who have already had to deal with menopause.  I officially feel for you. Menopause can go to hell.

The diabetes insipidus hasn’t corrected, either.  I still drink my way through loads and loads of cold, wet things, and I still pee it out all of the time.   I am constantly slugging on something – usually ginger ale since it kind of rights my tummy.  I am a huge fan of Route 44 drinks from Sonic, too, but considering I suck them down in .2 seconds, I feel cheated.  I am really ready for this to correct itself.  Last night I went to Kroger and spent almost $50 on DRINKS.  I bought some yogurt, some egg beaters and a red bell pepper, and the rest was all liquid to curb my insatiable thirst.  It’s insanity.  I have a drinking problem.   Someone please write me a country song about this.   I know there are lots of country songs about drinking problems, but not this kind.

I’ve had some good moments, don’t get me wrong.  I’m still amazed at the support that I have and the friends that I have.  I honestly have no idea what I did to deserve any of you, but I’m glad that I have you.   I feel so close to mentally snapping, and I think the only thing keeping me from going over the deep end are my incredible friends and family.  On the flip side, though, I’m finding out who’s really there and who’s not once again.   The ones that have always been there are still there – amazingly – and I am quite thankful.  But other relationships are being tested, and people I thought wouldn’t break my heart have.  But hey, at least I’m finding out now.   Right?  Again, the tried and true ones are still around, and that’s really all I need to worry about anyway.

I finally got to see Heather.  She came back from Africa and I got to see her and her mom yesterday.  I kind of wanted to cry seeing her (crying now thinking about it) but I kept my emotions in check somehow.  She was my rock the first time around, and not having her attached to my hip this time around has been difficult.  So Heather, since you are reading this, realize I am completely co-dependent upon you and so are my parents.  They are glad to have you back on this side of the world so you can deal with me.  I think I’m going to take a ride in her passenger seat in October and go live on her sofa for a week.   I’m really homesick for her now.   We had a good lunch, though, and even saw some celebrities.  Neither of us are really impressed by celebs, but it was her mom’s first time in Nashville, and she got to see two of them in the same restaurant.  Nashville was pulling out all of the stops.

Anyway, thanks for the phone calls, and emails and texts and tweets and visits.   You really have no idea how much it helps keep me from going insane.  I really hope something changes and changes soon.  I still feel like I’m slipping through the healthcare cracks a little bit, and I fully intend to give my providers a piece of my steroid-enraged mind when I go back for a follow-up visit.  Screw sweet little southern girl . . . I’m pulling out all of the punches and blaming the steroids, since I can’t seem to get off of them anyway.   I am pretty much disgusted at post-surgery follow-up at this point.  It really shouldn’t be so hard.

Thanks, too, for putting up with all of my rants.   As long as I’m ranting, I guess it means I haven’t lost all of my spirit.  So maybe it’s a good thing when I get all bitchy and crazy and ranty.  Rachel is still in there somewhere – under all of this steroid fluff and crazy.   To use one of my favorite British phrases, I feel like I’ve lost my scotch.  Maybe I have, who knows.  If I have, they’ll just give me a pill for it.  I’m getting quite used to fixing things with pills these days.

Thursday was my first non-completely horrible day.  The nausea subsided almost completely, my stomach felt up to accepting food (my dad made me chicken and dumplings – yes and please!) and the CSF leak mysteriously disappeared. I didn’t taste it at all.  Needless to say I was quite happy about that development.

But Friday it was back, and it blew to be honest.   I did have some fabulous visits from friends and got to catch up with old faces.  I even had a nice shower and shaved my legs.   There is something to be said for shaving one’s legs and the mental pick-me-up it provides.

I’m not sure why the CSF leak came back with such a vengeance.  I really didn’t do that much at all.  I’ve been trying to lay low and chill, and while that is a hard task for me,  I am really putting effort into swallowing my pride and depending on people.  It’s hard, and I’m not a big fan, but it’s a must right now.  So believe me, I really am trying to chill out as much as possible.   The steroid tapering is for the dogs.  I mean that.  I am terribly nauseous, and I’ve only been able to taper down to 80mg.   The nausea is bad enough with the CSF leak but the steroids are just complicating matters.  I am not having fun with this process at all and I still have to get down to 20mg.  These next few weeks are going to be brutal.  I’ve got quite a battle ahead of me.  Both Dr. Lakhani and Dr. Ludlam warned me that it wouldn’t be fun and that my body would stage a protest.  To quote Dr. Lakhani: “You will feel like you’re dying, but you’re not.”   It feels terrible, that’s for sure.  My body deserves a Razzie for worst dramatic performance in a drama.  I am terrified of having an adrenal crisis.  I experienced one after my first surgery, so the first little symptom I get that even hints of adrenal insufficiency makes me panic.  I have to force myself to stay completely still, close my eyes and try like hell not to panic.

I won’t be able to go lower on the steroids until these complications pass. Normal people have bodies that adjust to stressful situations and so their steroid levels ebb and flow along with whatever is happening in their life at the time.  I no longer have that luxury.  Now, when I’m sick, or stressed, or fighting an infection, I have to overcompensate and help my body out by giving it extra steroid.  Hell, even traveling to London will require extra steroid just because traveling in general is stressful.   At least when I get off the plane at Heathrow I know exactly where to find a greasy spoon to satisfy Seymour.   It’s a fine tightrope to walk, and I’m scared to push my body too far.

The great, fantastic, wonderful, awesome and amazing news is that I FINALLY have home health.  It has been one helluva fight with insurance to get this approved.  Cherish started the process and worked like a dog to make it happen, and the staff at Maxim has been wonderful and worked tirelessly to get this to happen.  My mom had to get involved, too, and basically threaten the insurance company with a lawsuit if they don’t get their crap together.  I finally got approved for 14 home visits much to my delight and my doctor’s delight.  The home health nurses are wonderful people and just knowing they will be here to monitor this infection and any other complications that may arise really alleviates a lot of stress that was probably keeping me from healing.

Since I am a Cushing’s patient, I am slow to heal anyway, so I actually have to be treated like a diabetic patient.  I took my last dose of antibiotics and now we just have to keep it very clean and the outside dressing dry and cross our fingers.  I’m also trying to drink two protein shakes a day since the protein will help my body heal faster.

So many people have come by and visited and it’s really helping pull me through this.  To everyone that has taken the time to come spend time with me, thank you.   I’m a little disappointed in a few people, but have been blown away by others and their concern and kindness.   Toby and Elizabeth came by on Thursday and brought pumpkin spice lattes.  Cherish spoiled me with a chocolate milkshake for breakfast on Friday and Natasha came by with a smoothie for lunch – and lots of ideas for helping this stir-crazy chica organize and decorate her apartment in her downtime.  ;)   Liquids are about all I can handle with this nausea, but yesterday with the help of some homeopathic remedies, I was able to keep down mashed potatoes, crackers (LOTS of goldfish crackers) and a grilled cheese.   I’m still ceaselessly thirsty, so the mostly liquid diet is actually quite refreshing.

My friend Jess also came in from Atlanta for the weekend to hang with me and that upped my spirits immensely.  It was a sit-in-pajamas-and-do-nothing weekend.  We watched naughty British television (which makes the weekend immediately a win in my book) and sang along to songs from The Little Mermaid.   Anyone who knows me knows that this plan is perfection in my book.  Nothing can make Rachel smile like comfy pajamas and a cheeky, smart-assed Brit.   We also nommed on said grilled cheese from the Grilled Cheeserie, my favorite food truck in Nashville.  I had the “Frenchie,” which was french toast bread pudding and brie topped with fresh berries and maple syrup.  Seymour was in heaven.

Tomorrow will be a big day with Dr. Russell.  I wasn’t able to collect any fluid for him – it still only goes down my throat and not out of my nose.  Quite frankly, I’m glad about this, because if fluid starts coming out of my nose, I’ll have cardiac arrest and then we’re all shit out of luck.  I really hope my suffering from this CSF leak/rotting fat graft is almost over.  I feel like I can’t take much more in that department, but hopefully I can make it just one more day. Well, two if he goes ahead and schedules surgery to fix it.  I know it delays my healing and restarts the clock all over again, but at this point I don’t care.  It has made me so miserable.  My threat to YouTube how to patch a CSF leak with tweezers still stands.  I’ll keep you posted.

Yesterday was still horrible and emotionally fraught, but I really think we made some progress with this whole healthcare thing.  I finally got to see Dr. Lakhani, and he finally got to see what the hell even happened to me.  He knew I was having a second pituitary surgery, but that was it.  He had no idea what had been done, how much of my pituitary gland had been taken out, what medications I was on . . .he was completely in the dark.  That had been part of the problem.   It was hard for him to treat me if he had no idea what he was supposed to be treating me for.

He spent a good half hour with me going over the records from Seattle, and figuring out my medications and where I’m at right now.  So now I have Dr. Russell on board and I have Dr. Lakhani on board, and I’m starting to feel a little bit more centered. Like, if something happened, there would be two really good doctors at Vanderbilt that know what to do for me.

The infection thing is still a very sensitive subject.  I’m still getting a lot of pushback on that, but what it boils down to is that no one at Vanderbilt wants the liability of dealing with someone else’s wound.  If they start playing around it, and I get sicker, it’s on them. But then again, if they don’t start doing something soon and I get sicker, they’re going to have a bigger problem, too.

My mother got in touch with Dr. L. yesterday and much to my surprise, Dr. L. had NO IDEA I had an infection.  Lots of people in his office know about the infection, but no one bothered to tell him.  Needless to say, he was fit to be tied.  We are now under strict instructions to ONLY talk to him and no one else.  He is going to try to get home health ordered for me, even if my insurance company tries to raise a stink about him being a doctor in Washington and not in Tennessee.  If, for whatever reason, he can’t get home health, then I’m on a flight back to Seattle, and I’m being readmitted to the hospital until I am healthy again.  He’ll combine that trip with what would have been my 6-week followup so I don’t have to come back out again.  It gets pretty expensive flying to Seattle every two weeks, and he understands that.

So, hopefully today I get home health with skilled nursing so I can get rid of this dead blasted infection.  My stepsister changed the dressing again for me last night.  It’s still oozing, and it’s light pink.  It’s not a vibrant, healthy pink so it’s not completely on the mend, but at least it is pink.  And while I’m waiting on this home health stuff, I’m going to just pay $30 co-pays at urgent care facilities so a doctor is looking at it, cleaning it, and making sure I’m on the mend.  This infection cannot get worse.  I can’t afford an infection – not two weeks post brain surgery and on all of these steroids.  I can’t let this slip through the cracks, and it’s still infuriating to me that I even have to worry about it at all.

Speaking of steroids, I am trying to taper down and it’s brutal.  I am soooooo nauseous, but both Dr. Lakhani and Dr. Ludlam have told me that I have no choice now.  I have to taper down.  My body is going to be a melodramatic drama queen and make me feel like I’m dying, but as long as I’m not throwing up, I’m fine.   I feel like I want to throw up, but I’ve just got to sit tight and let my body adjust.   So the plan for today is to lie in bed all day, take my anti-nausea stuff and try to sleep my way through the taper.  It’s mind over matter now.

The CSF leak/rotting fat graft still makes me sick, too, so I have a double whammy, but I hope, hope, hope that tapering off the steroids will make it heal for good.   Even if it doesn’t, at least I know I do have a surgical option to go in and repair it next week.  These setbacks have really depressed me and I’m pretty down and out, but I just have to buckle down and get through it.

In the meantime, if anyone wants to bring me a milkshake, protein shake or smoothie I will gladly accept.   I’m discovering that solid foods are not an option right now with all of this nausea.   I’m going to be on a liquid diet/soft food diet for the next few days while my body adjusts.  I’m not looking forward to laying in bed with nausea for the next couple of weeks, but it is what it is.

And hopefully I will turn that corner and heal and get on with my life.   I have a lot to deal with, but I have to take it one day at a time.  I can’t concentrate on pituitary function right now, or having to lose 100 pounds, or the long-term consequences of this surgery. I just have to focus on the here and now.

Easier said than done.  :(

I impatiently waited for this day to come – Monday, my day of relief.   If you recall, my mom rattled Vanderbilt’s cages and got me an appointment with my old ENT from my first surgery for today.  The CSF leak issue is really draining me and making me void of any hope of recovering from this surgery.

It was horrible all weekend, but I tried to really buckle down and deal with it, telling myself that Monday all would be better. I’d see a doctor, and then I’d be on the road to a fix, and I’d feel better.

Well, that kind of happened.

The day started off really busy.  A week before my surgery, my parked car got run over by a Tahoe, so I had to deal with that finally.   Had to take it to a body shop, get a rental car, and deal with all of the crap that comes with that, so my day started off with a bang.  I do get to ride around town in a brand new Dodge Charger for a few days.  My stepdad is seething with jealousy.

After that, I came home for a quick nap with my cat.  I’m house sitting for my boss right now, so poor Finn is getting the short end of the stick as far as attention goes.   He’s been such a good kitty, though.   He knows I’m super sick, so everywhere I am, he’s right there, too.  If I go to the bathroom, he insists on coming in to make sure I’m okay, and if I walk to the kitchen to make some tea, he’s under foot.   If I’m in bed, he morphs his furry little body into mine and doesn’t move until I move.  Everyone that knows him knows that he’s kind of insane, but I’m thoroughly enjoying this version of him.  He’s definitely racking up brownie points right now.

I’m wearing my father out.   I’m trying to be a good patient, and in my mind I think that I am being okay for what all I’m going through, but I’d be lying if I said that the last few days haven’t been hard on both of us.   I love my dad more than he will ever know or realize, and I know he adores me, but this has been trying our relationship.   I’m on an extremely high dose of steroids, and I cry at the drop of a hat.  He doesn’t know quite how to deal with it.  I don’t think I’m biting his head off at every opportunity, but unfortunately perception is reality.   Today was one of those days – where no matter what either of us say, it’s always the wrong thing.

After my short little nap, we drove over to Vanderbilt for my appointment with my ENT.   At first it was super stressful, because Vanderbilt didn’t do this second surgery, so once again they’re flying blind.  I’m wanting them to fix something and they didn’t do it, so it’s just kind of . . . lost in translation, so to speak.   The only thing I can concentrate on is that I am absolutely freaking miserable, and I know without a doubt it’s impeding my progress.   I have to wake up three or four times in the middle of the night to brush my teeth and gargle with mouthwash because the leak is causing halitosis to a degree I cannot even describe.  Like I’m eating rotting possums for dinner or something.  It’s the most foul thing I’ve ever experienced and it’s driving me batshit.   I hate bad breath/stinky things in general, so when the stinky thing is me?  I am none too happy about it.

Dr. Russell was the ENT that did the approach to my pituitary gland on my first go around.  He’s very experienced with pituitary surgeries, and does over 100 each year, so he’s definitely the guy to see at Vanderbilt.  I remember liking him in 2008, and I was reminded today why I like him so much.  He’s very easygoing, and he’s not one of those doctors that forces you to see his way.   He numbed my nose and used a scope and looked at what’s going on, and he’s not completely convinced it’s a CSF leak, but he’s not denying it, either.  From what he could tell, it is very wet, so there’s either a CSF leak that isn’t quite presenting itself to his camera, or it’s just A LOT of snot.  Either way, he understands it’s making me absolutely miserable.

He gave me two options.  He said he could go ahead and go in and redo the patch his way.  He prefers to do bone grafts over fat grafts because for whatever reason, bone grafts tend to scar over better, giving a tighter graft.  He looked at the fat graft, and it’s still in place, and it’s pulsing when I apply pressure (read: grunt), all of which he said is normal for two weeks post brain surgery.   The nasty taste in my mouth could be the fat graft rotting.  Isn’t that lovely?  Fat rotting in my mouth.  I am sooooooo excited about that.  I’ve always wanted to know what that tasted like. *rolls eyes*

The problem with doing that and doing it so blindly, is he could give me a CSF leak in the process.  He didn’t do this second surgery, so who knows what he’s going to find if he goes up there.  Plus, there’s lots of scar tissue.  So in trying to heal me, he may give me a bigger problem.   That being said, he gave me option number two.  He really wants me to collect some of the drainage in a tube and bring it back to him so he can test it for CSF fluid.  He said even if it comes back negative, it doesn’t rule it out.  One day I could produce CSF fluid, the next day I may just be producing snot.  There’s really no rhyme or reason for this thing, and he said crazy things happen all of the time.  But he’d be more comfortable testing the leakage first just to see what he’s dealing with.

So . . . for the next five days, I am going to try to make my nose leak.   It’s worse during the night, when I’m laying flat.  It kind of “pools” at the back of my nose while I sleep.  So every morning, I’m going to try to get up and make it empty into a tube.  I bet all of you are super jealous you don’t get to do this, too.   If I can collect 1/2 a teaspoon of fluid and bring it back to him, he’ll test it.   By next Monday he should know what we’re dealing with.   He gently reminded me that I’m two weeks post brain surgery.   I had major, major, major surgery and complications are part of the package.   He thinks I’m where I need to be at this point in my recovery and that each week I will notice major improvements.   If, by next Monday, I’m still leaking, and I’m still miserable, he will be agreeable to going back in and fixing the leak or whatever this is with a bone graft.

So I have to hang on just a little longer.   Dr. Russell is a very nice, patient man.  He knows what he’s doing, and he empathized with me.  He knows I’m not having fun at all.  The headaches are brutal, and that’s to be expected to, considering I just had something pulled off of the base of my brain.  My head isn’t supposed to feel happy right now.  I have to remind myself of that.

I am still frustrated with the home health thing.  I have a lot of doctors right now – both in Seattle and Nashville – and so far it hasn’t really been a concerted effort to help get me better.  It feels like no one wants to get their hands dirty, and I’m getting lost in the fold.  Seattle isn’t communicating with Vanderbilt, and Vanderbilt just kind of feels like they’re out in left field with this one.   I went to Dr. Lakhani’s office after my appointment with Dr. Russell and quite literally had a meltdown.  I was sobbing uncontrollably in the lobby.   I just feel like I’m at my wit’s end with this.  Granted, the extremely high doses of steroid are not helping me remain rational and calm, but I digress.  Dr. Lakhani’s administrative assistant was a wonderful resource, though.  He felt really bad for me, and knows it would make me feel better if my doctors in Nashville were all on board so everyone can treat me and know what’s going on.  He managed to get me an appointment tomorrow morning with Dr. Lakhani so I can fill him in on EVERYTHING and not feel so lost.   Maybe once Dr. Lakhani is on the same page as everyone else, then he can kind of take the reigns and guide me through this post-op minefield.

I am still very worried about this infection in my abdomen.  I really need home health care, but without a doctor’s order it’s impossible to receive it.   My PCP hasn’t been involved with this Cushing’s crap at all, so it’s difficult to get him to order home health.   The ER doctors can’t order home health – they can only ask me to follow-up with my normal doctors.  The ENTs don’t really deal with home health, either.  My normal doctor is my endocrinologist since almost all of my health issues are related to Cushing’s.  So now I am pretty much going to beg Dr. Lakhani to help me out with that tomorrow.  I cannot see to clean my wound, and it has to be cleaned every day.   I am freaking out about it, and that doesn’t help me heal, either.

Dr. Russell assured me that I’m either going to get meningitis or I’m not.  While I do need antibiotics to clear up this wound infection, it’s not going to have any bearing or whether or not I contract meningitis.  If it’s going to happen, it’s going to happen, and there’s not a damn thing I can do or he can do to stop it.   We’ll cross that bridge if we have to.  But he did say that after three weeks of a leak, my chances for contracting meningitis do increase. So it’s something to keep an eye on and be proactive about.

I am so emotionally raw right now.  I just feel like throwing in the towel.  I had prepared myself for lethargy, and weakness and soreness and a little bit of depression.  But I had not banked on infections that won’t heal, and nasty drainage from my brain making me sick to my stomach and wretchedly miserable.  Those weren’t supposed to happen, and now that they have, they have completely overwhelmed me.

The steroids are the devil.   I feel so fat and fluffy and disgusting.  I cry over warm Dr. Peppers, and if someone so much as even looks at me in the wrong tone of voice, I erupt into sobs.   I already had enough weight issues to deal with because of Earl, and now I will have an even harder road because of those dead blasted things.  I hate them with a passion.  Tapering off of them has not been successful, but tonight I am forcing myself to go down to 80mg, nausea be damned.  I HAVE to get off of them, and I’m going to have to show my body a little bit of tough love in order to make that happen.   And by Friday, I have to get down to 70mg.   Slowly but surely I will make my way toward my 20mg maintenance dose and hopefully I will no longer be a crazy, steroidal, evil bitch.

I really hope after tomorrow’s meeting with Dr. Lakhani there will be a turning point.  Everyone in Seattle will be on board with everyone in Nashville, and it will become a collective, concentrated effort to heal me.   It will also be comforting to know that if something goes wrong, there’s a doctor on this side of the Mississippi that knows what to do to help me.   So fingers crossed for a good appointment at Vanderbilt tomorrow.  I really love Dr. Lakhani, and I do feel like I’ve cheated on my boyfriend a little bit in seeing another doctor.  But it is what it is, and I had to get healthy.  I hope he understands.

And finally, just so we are clear.  I *am* going to Louisville to see my boy Sam.  I know it seems pretty impossible at this point with everything going on, but I’ve already sworn to be there in a body bag if I have to be.   I need some mental positives, and seeing him do his thing makes me happy, so damn it, I’m going.   Yes, it’s going to wear me out, but that’s what naps are for.   My mom doesn’t quite agree with this decision, but oh well.  I will be even more despondent and ridiculous if I don’t go, so . . .

Thanks for listening to my rant.  I promise I’ll be better eventually.   But in the meantime, I’ll take a Valium if any of you have any extras.  Just add it to my already impressive bag o’pills.   I feel like a one-man drug store.   And no, you can’t have any.  :P

I’m not even gonna lie – this week has been rife with serious bullcrap.  I’d tried to mentally prepare myself for a very hard recovery, but so far I have found myself very ill-equipped to deal with the things that I’ve had to handle.  I’m usually a very rational, logical, and sometimes even kind of cold and standoffish person, but the steroids are morphing me into this walking, talking cyclone of hormonal fluctuation.  It’s making my head spin, so I have no idea how the people around me are handling it.

As planned, I lounged around all day last Sunday so I could make it to my aunt’s annual Labor Day cookout and see my family.  It was very nice seeing everyone, but it did exactly what I thought it would do – it tuckered me out.   Aunt Edna made me my favorite strawberry cake, which was nice.  I scored a chocolate pie from my aunt Pat.   I received lots of hugs and kisses and pats on my back, which makes you feel nice knowing that people care.   I am truly a blessed person, and I’m surrounded by a family that loves me fiercely.  The same goes for my friends.  Not sure how I acquired so many people that love me, but I’m in no place to question it.  I’m just glad that I have an amazing support system.

My energy levels have yet to return.  The mornings are usually okay, seeing as I’ve slept through the night and stockpiled my energy.  The afternoons are the hardest.   My legs ache constantly, so walking from my bedroom to the living room can sometimes be a challenge.  I’ve tried to stay active, because lying around in bed all day long is not going to help me mentally.  I’ve a very active person, and if I give in to the doom and gloom that seems to be surrounding me right now, it’s going to significantly delay my healing.  So I’m trying to do little things to keep me thinking positive.  I read funny blogs, watch funny YouTube videos, have hilarious conversations with my friends.  Sometimes it’s hard to do, but I know I have to do it.  Attitude is everything.

But then a complication happens, and I find that I just don’t have the mental or physical fortitude to deal with any of it.  It’s been nothing but complication after complication since I returned home.  When I left Seattle, I had a small CSF leak, but it wasn’t flowing like a faucet out of my nose, so no one was concerned.  They said it’d heal on its own in a few days.  Well, guess what hasn’t happened?   I am constantly swallowing CSF fluid.  Sometimes it drips out of my nose, but it’s never the “faucet” the doctors want it to be.   But it never ceases flowing down my throat.  It’s not like you have any doubt, but CSF fluid?  It’s not very appetizing.  In fact, it’s quite nasty.  It keeps me nauseous, and I hate nausea, so it keeps me feeling pretty miserable.   Plus, I have nonstop headaches because of the CSF leak.   I am not happy about this at all.

I called Seattle on Monday evening about it, and was ordered on strict bed rest for my birthday.  So I did what I could. Lounged around at a 30-degree angle, watched movies, napped with my cat on the sofa.   Even though I was very limited with things I could do, my birthday was great.  I have received such an outpouring of love and support, so even if I didn’t go out and party it up for my introduction to my 30s, it was still a great birthday.  I totally plan on making up for it, though, when I’m feeling better.

Anyway, the doctor in Seattle discussed the pathology of my tumor with me, and once again it was positive for hyperplasia.  I wasn’t surprised there.   But it’s still very interesting that it once again was hyperplasia, and once again I’m having CSF issues.   There’s some kind of weird connection there.  I’m not a doctor, so I have no idea what it is, but it sucks.  If I wasn’t feeling better by Wednesday, I decided I’d go to Vanderbilt just to ease my mind.

Meanwhile, I also have this gash in my stomach from where they did a fat graft to repair the small CSF leak.  It’s bandaged up, and I’m being careful with it, so I’m thinking this entire time that everything is fine with it.  But then it started oozing – and stinking.  It was disgusting.  My stepsister is a nurse, so she came over to Mom’s and looked at it, and changed the dressing for me.  She could tell it was infected, but she bought me some time until I could make it to Vanderbilt the following day.

My dad drove me over to Vanderbilt around 11 on Wednesday.   I didn’t have to wait very long to get to a room, but Vanderbilt is Nashville’s trauma center, so they’re very busy, and sometimes it’s easy to kind of get forgotten.  I was fine – I lounged around  on the bed, waited for doctors to come see me, etc., but it didn’t sit well with my parents. I understand where they’re coming from.  I may be 30, but I’m still their baby, and they know I’m feeling horrible, and they’re feeling pretty powerless.  After I was there for a few hours, my mom called and rattled the cages.  It was a little embarrassing, but I also didn’t almost watch myself die three years ago when Vanderbilt let me slip through the cracks during an adrenal crisis.  It’s a very sensitive subject for my mother, so I understand why the Mama Tiger came out and roared reeeeaalllyyy loud.

Shortly after, I was seen by a team of ENT doctors.  I also had to wait on general surgery to look at my incision site, and sure enough it was infected really bad.  In fact, it hadn’t healed AT ALL since surgery.  I’d basically been walking around with a gap in my abdomen covered by a Band-Aid.   They cultured it and they cleaned it out, and gave me instructions to pack it myself at home until it healed.  Um…no thanks.  I don’t deal well with gross things, especially gross things coming out of my body.  Plus, the incision is right on my pubic bone, so I can’t see to pack it and clean it.  And I’m terrified I’m going to do something wrong and make matters even worse.  Needless to say, I wasn’t thrilled at all with this development.

The ENT docs actually ended up changing my dressing and cleaning my wound.  They have to get this infection cleared up first, because right now with the CSF leak, my brain is vulnerable to infection.  The last thing I need is for infection to spread and turn in to meningitis.   But here’s the catch – I’m on a very high dose of steroids.  Steroids make it damn near impossible to heal.   Plus, they make me insatiably hungry.  Um, hello, Earl did enough damage to my scale on his own. The last thing I need is steroid weight.   I’m super terrified I’m going to be 300 pounds by the time I get to taper off of steroids, but oh well.  It is what it is.   In the meantime, the monster in my stomach has been named Seymour (“Feed me, Seymour, feed me!”) and hopefully soon he will be satisfied with carrots and lettuce and let me get my body back.

I am so incredibly frustrated.  I am taking a very strong antibiotic, but it will take several days for it to really take effect, and until it does and the infection is gone, I have to continue to battle this CSF leak.  It’s like I’m stuck on this hampster wheel with no hope of ever getting off of it.

I’m not big on taking pain pills for several reasons.  I’m not a big pill popper in general.  But right now I’m toting around 12 prescription bottles and having to take pain pills just because everything hurts so bad.  Plus, narcotics have a tendency to stop you up, and I’m terrified to even try doing that, simply because that requires some effort, and I don’t want to blow the already precarious patch over my CSF leak.   I can’t win for losing.  I’m scared to shit and I’m scared to sneeze. How awesome  is that?

Some progress is being made, although it’s slow.   My wound is still infected, and I did hear from Vandy yesterday that the initial culture came back positive for a pretty wicked bacteria.   I am taking a very strong antibiotic, but it’s not going to be strong enough to officially kick it to the curb.  It’s helping it not get any worse, but it’s not going to cure it.

My mom also had to rattle Vanderbilt’s cages again yesterday.   I was told in the ER to come in next Tuesday to reassess the CSF leak and the infection.   So I called yesterday, and got the most helpful person ever at the doctor’s office (that was dripping with sarcasm, by the way).   She was very condescending and rude, and informed me that ALL of the doctors in her office would be gone next week at a conference.  Um, excuse me?  That just sounds stupid on it’s face.  They’re DOCTORS for crying out loud.  What happens if some kind of, I don’t  know, emergency CSF leak happens?   Patients just don’t get treated because the doctors are on a retreat?  I don’t think  so.   I told the lady that HER BOSS told me to come in on Tuesday and she said “Well I don’t know what you expect me to do about it.”  Really, lady?

My mom put her in her place, though.  She suggested to Miss Moody that she actually look at my records before trying to run the show.  Once Miss Moody read through the records, she realized that yes, her boss, even though he’s an ENT doctor had been the one to treat my infection (initially she told my mother that her boss doesn’t deal with infection, so he’s not going to be able to look at it anyway).    She also realized upon reading up a little bit, that I do in fact have a CSF leak that is going to require treatment from her boss.  It’s amazing what happens when you actually read.

Needless to say, I now have an appointment with the doctor that assisted with my first pituitary surgery on Monday afternoon.  I’ll have to get an infusion of some kind of really strong  antibiotic, but then we can discuss what to do about the CSF leak and hopefully getting it fixed.  I also wanted to hire home health to come and assist me with everything, but of course insurance bureaucratic red tape is making that damn near impossible.   Insurance companies infuriate me.  I called the one THEY TOLD ME TO CALL, and yet they can’t get approved because my insurance company is not located in Tennessee.  Really, insurance company?

Thank God for amazing and skilled and super awesome friends, though.  My friend Cherish has been a warrior.  Not only did she spoil the ever loving crap out of my very needy cat while I was in Seattle, she’s also devoted a lot of time to me since my return.  I don’t know how I’ll ever repay her for all of her kindness.  My Dad is staying with me and making sure I’m taken care of, and then my girl Jennifer is coming by and helping me tend to my wound so it will heal and I can move on with treatment.  I’m definitely going to be cooking them a throw-down meal of epic proportions once I feel better.  They’ve spoiled me and taken such good care of me, so I’m going to repay them in one of the ways that I know how.  With food!

I seriously don’t know what I’d do without them.  I’m a very independent person, and I hate asking for help, but I’m slowly relinquishing the tight grip I have on my pride.   I’m very fortunate to have such wonderful people in my life.  I have a wonderful network of people that have lived through pituitary surgery, and I’m leaning on them like a crutch, too.  They’ve been where I’m at now, and they know it gets better, so it’s good to hear from them.  A new me is just around the corner. I just have to hang on a little bit longer.

So right now, we’re just waiting.  I’m really hoping Monday brings good news – that my infection is almost cleared up, that they can fix my CSF leak, and that I can finally start to taper down on the steroids.   In the meantime, I’m going to take it easy, but try to get out of the house a little bit.  Being cooped up in here is not doing me any good.   I have some friends who have promised to visit, which will be nice, and tomorrow I’m going to go see a show at the Ryman.   I’m also going to see one of my musician loves in Louisville in a couple of weeks, and he always puts a smile on my face, so it will be nice to see him, and see my friends who are going as well.   I’m trying to pepper my life with some positives.

I’m trying to stay focused and positive, but it’s hard.   Thanks so much for everyone still rallying around me.  I know I have to be super annoying right now, but thank you for loving me anyway.

Hopefully next week’s update will yield some good news.

I got released from the hospital on Wednesday, and on Thursday I went on a short field trip with my mom and dad to a UPS store to ship some things home.   We took the shuttle from the Swedish Cherry Hill campus to the First Hill campus, and then we walked for a bit.  I had to rest with my dad on a wall while mom went and completed her errand, but it was nice to get outside of the hospital and smell fresh air.   It completely tuckered me out, though.

Dad left to come back to Tennessee on Friday, so mom and I had intended to enjoy one last day in Seattle, but the field trip on Thursday really did me in.  We ended up lounging around all day and ordering in Chinese food for dinner. Kept it very low key.  I really wanted to go whale watching on this trip, but there was no way I could have handled that.  Maybe on one of my follow-up visits I’ll get to do that.

Traveling was brutal, and that’s being nice.   We hired a shuttle to pick us up and take us to the airport, and being in a van with really bad shocks didn’t help my nausea.  I’m on 90 mg of hydrocortisone right now (my fake steroid) and before we left the hospital, I had to take  what they call a “stress dose.”  You don’t realize how stressful traveling is until you’re in the thick of it, so they gave me extra steroid so I could make it through the long day.   We had wheelchair assistance to the gate in Seattle, but since we got to the gate so early, they took the wheelchair away.   I sat in a chair, but by our scheduled departure time, they decided to switch the gates.  So we had to walk – and man alive was that tough.  I was shaking like a leaf, needing extra cortisol to walk even that short of a distance.  Someone gave me a seat, and then when we got on the plane, we tried to sit up front since I was so sick.   The flight attendant was not very nice at all – the total antithesis of the Southwest policy – and yelled at me when I asked if I could hold my medications in my hand during takeoff.   I had very explicit instructions on what to do in order to travel home, and it required taking pills during flight.

My mom ended up kind of getting in her face, and giving her the mom look, which shut her up.   I moved three rows back so I could hold on to my pill bottles and not have an adrenal crisis mid-flight.  I took my next stress dose to get me through that leg of the journey.  The rest of the flight, though, that same attendant was really nice.  Mom either scared her with the “mom look,” or she spit in my Sprite.

By the time we got to Denver, I was horribly exhausted.  Our flight in Denver was delayed, but I did get wheelchair assistance the entire time there.   We also sat next to two nurses, who kept a watchful eye on me en route the entire way to Nashville.  By the time we got to Nashville, it was well past 11:00, and by the time we got to Springfield, where I’m staying for a few days, it was after midnight.

I slept almost all day yesterday, and gathered up enough energy to go to my family’s Labor Day cookout to see everyone.  My aunt made me my favorite strawberry cake for my birthday (it’s tomorrow) and I got to see everyone.  It totally wiped me out, though.  I’m still not over this diabetes insipidus complication.   If I take two pills to stop the constant peeing, I blow up like a balloon from fluid retention.  If I only take one pill, I pee every 30 minutes and I’m so thirsty my throat burns.  My tongue literally sticks to the roof of my mouth.  I down water and cokes and juice and whatever I can get my hands on, only to pee it out a few minutes later.  It’s very annoying.

I already know for sure that I could never be a junkie.  That’s kind of what I feel like with this steroid thing.  They took the tumor out, which was giving me TOO MUCH steroid and causing all kinds of health problems.  But since you need steroid to survive, they start pumping you with it, and then slowly wean you off to a manageable level.   My body literally starts shaking uncontrollably when it’s almost time for another dose of steroid.  My hands shake, my body trembles, my energy quickly depletes.  It’s like you can see my entire body shutting down without it.   And then when my mother gives me my steroid, in twenty minutes I’ve stopped shaking and trembling, and I can walk again, and the light comes back on behind my eyes.  It’s so strange.   It’s like my body needs a hit of steroid to survive.

I also had a small CSF leak happen during surgery, which is a common complication, but it’s still not fun.  They didn’t seem too concerned since it’s not flowing like a faucet out of my nose, but all day long I taste CSF fluid running down my throat, and it upsets my stomach.  I’ve tried laying at a 30-degree angle to help it heal on its own, but no luck so far.  Plus, the spinal headaches associated with CSF leaks are absolutely terrible.  It feels like there’s a jackhammer going off in the middle of my brain.   If it’s not better by next week, I’m going to take myself to Vanderbilt and have them look at it.  They took a fat graft from my abdomen to patch it, and it should heal on its own.   But I’m watching it carefully, and I’m very annoyed with it.  It tastes disgusting, and excuse my French, but it’s like I’ve eaten a bowl full of ass.  It’s awesome.  Not.

It’s nice to be home.  I go back to Seattle for a follow-up sometime in October, and hopefully go back to work around then, too.  I’m already bored to tears, but I know I have to be patient and heal.   I have a very structured regimen of drugs I have to take at different times of the day, so my cell phone alarm is constantly going off.   Right now I have 9 different prescriptions I have to take every day at varying times.  After my checkup in October, we’ll know what the remainder of my pituitary gland will do as far as function, so they will add more daily prescriptions to my regimen then.  I’m a walking, talking drug store.

Thanks for all of the love, encouragement and support.  Please come visit me when I get settled back into my place.  It’s going to be a long seven weeks having conversations with my cat!