A little better each day…

Well, I am glad to report that recovery is getting a little better as the days go by.  It’s not perfect – not by a long shot – and I am far from being recovered, but at least I’m not so despondent anymore.  Small miracles.

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.