Mayo visit update (3rd appt) : FSGS Sucks

I had my appointment with Dr. Fervenza today.  Some numbers are good, some not so good.

The good news is that my protein has bone from 15.2 to 6.7.  You'd think I'd be elated, but folks, I've been here before.  The EXACT same thing happened when I started the clinical trial with Humira, ad we all know how that turned out.  So, I'm just thankful it didn't go up.

Great news is that my albumin is going up.  It's at 2.0 right now, and has been hovering around 1.5 for about a year, so this is definitely an improvement.  It also helps to explain why my swelling has greatly diminished.  At least there appears to be a reason for it, rather than just randomness.

Bad news is that my GFR is now at 39, my RBC is high (although I really am unsure as to what that means for me....it's just BRIGHT RED on my lab results, and red is never good).  My creatinine is 1.5 (was 1.4 last month, it was 0.7 this time last year)...blah blah blah.

You know, it's funny...its kind of anti-climatic.  I live in a state of hyper-anxiety with this disease, and it's been progressing rapidly lately.  To hear numbers like this gives me a bunch of mixed emotions.  I'm not happy.  I'm not sad.  I just.....am.

I am exhausted.  I'm beyond anxious....it's like I can't take a deep breath, or if I do, the tightness comes back right away.  I feel as though I haven't slept for 2 days, physically.  I did yoga yesterday (yay me) but am now sore as hell.

I'm still incredibly thankful that my swelling hasn't come back yet, but there it is.....that word....."yet".  Some of you understand what I mean....it's nearly impossible for me to celebrate any "victories" because I don't feel like they truly are.  There's always something lurking around the corner.  This isn't going to "go away".  The likelihood of me going into remission are REMOTE...yet I'll keep doing what I can.  We're going to increase my prograf a little more, which means more tremors, maybe some headaches, a higher creatinine and a lower GFR.  But Dr. Fervenza promised me only 6 months of this....no more, and he reiterated that today.  Only 3 1/2 more months to go :)

It's been rough lately : FSGS Sucks

I feel myself sinking a bit.  The unpredictability of this disease is sometimes paralyzing.  I've got a concert to go to tomorrow night (Florence + The Machine woooohoooo!) and instead of worried about a designated driver, I'm worried about whether I'm too swollen to fit in a the new shirt I have, and what shoes I can stand up in for that duration.  I hope I can have a really great physical day...let loose at the concert (no drinking, though....that's totally unnecessary with Florence) and dance like there's no one watching.

I know I'm fortunate....please don't think I take any of that for granted.  I met (physically ;) a new friend local to the area, and even she said that if she didn't know better, she wouldn't know I was sick.  I'll take that as a compliment and run with it, so thanks Julie :)

I can still get up in the morning (although it seems to be getting harder and harder because the exhaustion never ends).  I can mostly cram my fat feet in my shoes (no more bones :( ).  I have a foot rest so it doesn't get any worse during the day.

But I, like a lot of women I'm imagining, do a little body inspection before we hit the shower/bath.  And I just HATE what I see.  I see a swollen belly....thighs that are uncomfortably large...strange tiny little dark bruises from me bumping into things....bruises all over my thighs from the acthar injections.  Hell, I woke up yesterday with what look like claw marks on the top of my left foot...it's all nasty and swollen (even more than normal)..hurts like hell..should make standing in shoes tomorrow a blast.  And it'll take weeks to go away.  I STILL have a bruise on my arm from when I got a blood draw 2 weeks ago.  I'm feeling utterly broken today.

I know I gotta snap outta this before it gets worse in my head.  I got my urine tests results back from Mayo yesterday and they're not good.  If I'm reading them right (and there's no telling with 9 pages of results), my protein has increased from 10.1g to 15.6g.  That.  Blows.  I've got a lot of questions for Dr. Fervenza when I see him at Mayo Clinic on Monday, and I can't wait for some clarity.

I still take my salt baths every other day, so at least that's been a guaranteed 20 minutes of alone-time.  Tonight...I just laid there...no reading, no watching netflix....just laid there and rested.

And I wanna do yoga...or pilates.  Something to make me feel  graceful and beautiful....maybe this weekend..

Another sleepless night : FSGS Sucks

Gawd...I feel like shit.  Please somebody put me out of my misery.

I tried to sleep.  I REALLY tried.  I was hungry, but went to bed anyway because I knew I had to work today.  I lie in bed and watched one episode of Bones...and when it was over I still wasn't tired enough to sleep, so I watched another.  At this point, it was 11:45pm, and nary a yawn.

But I was determined.

And I got my ass kicked.

My mind....forever racing.  Izzy up at some point...freaking out (maybe sleepwalking even).  She came in to our room, started crying about her blankie, so I got up to go to her room only to not find it and realize she already had it in bed.  And then she wouldn't go back to sleep.  Like her Mamma.  And then she had to go potttttttttttty.  And then I got annoyed.  And then she had to go potty again....10 freaking minutes later.  And then I got angry as Joacim slept blissfully ignorant of the hell I was living.

Finally, I took a swig of my hydrocodone cough syrup as a desperate measure, thinking it was around 2:30am or so and 3 hours of sleep were better than none.  Sadly, it wasn't 2:30am....but rather 4:30am....and I was STILL wide awake.  Watched more Bones.  Alarm went off.  Freaked out.  Made an omelet (the only good part of the day still).  Showered in an attempt to mask my physical state.

And now I sit here, in a fog of confusion, sleep deprivation, physical discomfort and a general all-around feeling of being utterly, completely, hopelessly miserable.

I sent an email to my doctor to update him...here's hoping he prescribes something quickly.