FINALLY...a normal day : FSGS Sucks

As you recall....the beginning of last week S.U.C.K.E.D for me.  Unfortunately, it ended in pretty much the same way.  I went to get my hair done Wednesday night (yippee), but as I sat there, I got THE WORST sore throat and ear aches that I've ever had...no seriously..THE WORST.

I got home..cried about how tired I was of feeling like shit, and then went to bed.  I woke up feeling pretty much the same way, so I tried to go to the minute clinic at my CVS (since I don't have a doctor here yet), and they told me they couldn't see me because I was on immunosuppressive therapy.  Awesome.  So they recommended me to the nearby Urgent Care.  Let me just throw this out there that Urgent Care is such a moronic term.  There's nothing "urgent" about it...it took 2 hours..but they FINALLY gave me an antibiotic because my WBC was up, clearly indicating an infection of some sort, but thankfully my body is still able to try to fight it.

I had to take an hour-long drive after that for work...couldn't get out of it, and then back home again, and I was DONE.  Laid on the sofa with Izzy and watched a movie.  Friday night was pretty much the same way, except I woke up with my eyes swollen, but my left eye was really bad as you can see below.

And it just kept getting worse and worse throughout the day.  I swear I go from chronic dry eye to chronic weepy eye in a heartbeat.  And my skin around my eye got really red and irritated and dry.  Btw....the headband..yeah, that's Izzy's idea.  She was doing Mamma's hair :)

But then on Saturday I woke up and it was HORRIBLE.  Okay, horrible may be a relative term, but who the hell cares...it's MY FACE.  Lying down was the worst thing I could've done for the swelling.  And I KNEW at that point that the infection was a sinus infection, because my eye sockets...hell, my whole face hurt.  

And then I started crying again because we had a party to go to that evening.  And for me, well, I just didn't want to go looking like a freak of nature.  I don't want people to look at me in that way...and I'm tired of being sick.  I'm tired of feeling as awful as I do, yet having to "put on a happy face".   Luckily, gravity helped my face (but not my ankles, so I wore jeans) and I went to the party.  I had fun, but didn't feel like myself.  I was so worried about what I was eating, thinking it was going to trigger some crazy other side effect (I've had hella awful heartburn lately).  And I had a glass of sangria, then some water, and then ventured to hot tea (wooohoooo!  living large at the party while everyone else is getting drunk off of yummy wine and beer :)   Fuck...I'm just tired of it.

So tired that I took up my friend Julie's advice and called a holistic kidney doctor on the east coast.  I sent her my labs, completed a questionnaire, and then spent an hour on the phone with her yesterday going over her recommendations.  Surprisingly, everything was reasonable (except no cheese....it's a sad sad world if there's no cheese in it).  And one of the things she DID recommend was taking a 20 minute salt bath every other day.  Now THIS is a prescription that I can easily follow.  It's essentially creating reverse osmosis through my skin to the bathwater to draw out the toxins, and I think it actually sucked out some of the edema today as well, because I can see BONES IN MY FEET!!  Check out these beautiful bony feet!!!!

I've been a bad, bad patient with my meds.  After last week, I stopped taking the Cellcept completely.  I forgot my Acthar dose on Saturday.  I didn't start taking ANY meds (except for the amoxicillin for the sinus infection) again until Sunday night, and I think the break has done me a bit of good...a bit of perspective at least.