It’s been a long, hard week.

The subject of this post pretty much sums up everything I’m going to say, but I’ve had several requests to update my blog so I’m doing that now.

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.