Velvet Betrayal

I'm WAY too depressed about this.

Like SERIOUSLY depressed.

Red Velvet Cake ice cream is what my dreams are made of.  The only place I'd been able to get it before is a place called Maggie Moo's.  It's 20 minutes away from my house & ridiculously expensive. My mother-in-law {who loves me dearly} ordered a Red Velvet Ice Cream Cake from there for my birthday last year.  It was the best present present ever.  Heaven.

I have a pretty serious addiction to ice cream that has been made worse by the Prednisone sugar cravings.  I married into a family that could open their own Blue Bell store - there's usually at LEAST 10 flavors in my in-law's freezer at any given time.  I've seen up to 18.  No other brand is permitted.  We are Blue Bell snobs.  But their chocolate based ice creams ALL have wheat in them.  So I have been consuming large amounts of Happy Tracks, which is vanilla based with LOTS of extra chocolate stuff in it.  It's delicious.

And now... after all of this time.. all of the loyalty... all of the money I've spend on Blue Bell... they tease me with this shiny new flavor; the flavor that my dreams are made of.  Rude.  How freaking rude.  

This is the first time I've truly been depressed about not eating gluten.  

I know its just ice cream to ya'll... but this is like the ultimate temptation.  

Ugh.  

I'm having chest pains...

Really, Prednisone??  REALLY?!?!?!

Could you possibly make my life any more sucky?

Oh wait, don't answer that.

Please don't.

I know you could.

Am I 29-years-old or 79?  Sometimes I seriously wonder.

Adjusting to 40

Nothing too exciting going on but its another insomnia night & I've run out of Facebook/Pinterest posts to look at.  Might as well blog!

I did feel a little weird dropping down to 40mg of Prednisone.  I just felt foggy... not great... but I think I'm adjusting now.  Since tax season is over I've been getting back to the gym so that's super exciting!  I am loving the spin classes again!  I did one Saturday morning, one Monday night & one this morning.  I've got a sore bum but it feels awesome to be back.

I still am eating too much ice cream.  The sugar cravings are UNREAL.  I haven't put on more weight but my belly feels super chubby & my face... oh my face... oh well.  What is there to do?

I definitely feel the "mood" side effects.  I can be pretty ruthless with my words.  I am doing my very best to not be a total beast but its definitely hard.  Just steer clear... and don't say I didn't warn you.

The hair is still growing in very dark - need to get that taken care of asap.

My back hasn't hurt as bad since I saw my chiropractor a couple of weeks ago but I am seeing ANOTHER chiropractor tomorrow and... get this... I get a 30 minute massage included in my adjustment!  And they take my insurance!  I cannot wait.

I ordered some test strips online the other day so I can monitor any protein in my urine.  That'll be interesting...

Ok, totally boring post.  But whatev-- just keeping record, right?

Taper

Let me first start off by saying that I will never, and I mean NEVER, get lab work done on a Monday morning.  I usually walk in, sign in, give them my orange jug of pee, get some blood taken, then I'm out.  I got there 20 min before my appointment time of 10am & the waiting room was FULL.  As I signed in, I was the only one with an appointment time so I thought that would help.  After 30 minutes of waiting, I was getting ticked.  Oh, did I mention I had ALL THREE kids with me?  Oh they were going NUTS.  I wanted to kill myself.  Or them.  Or the lab people.

It was one of those days... where I could feel the Prednisone taking over my personality and making my head spin like a she-devil.  I went up to the front, fully planning on being confrontational.  And I lived up to my expectations.  I thought I was going to loose it when she said I was being SKIPPED OVER because I had checked the box that said I had a specimen to drop off.  Well... I DID HAVE A SPECIMEN TO DROP OF LADY!!!! I also have an APPOINTMENT TIME!  What kind of idiot would make an appointment if they ONLY had a pee jug to drop off?  Ugh.  I hate stupid people.

Ok, so that was that... fast forward to today...

I had my appointment to get my results.  My protein is WAY down.  YAY!  It started at 5600mg before treatment, then 1000mg after 2 weeks of treatment.  This week it was 150mg, which is ALMOST in the normal range.  The only issue in all of my labs was my creatinine was up to 1.19, which is high.  Not TOO high, but high.  So the dr. adjust my BP medicine {lower} and she said that'd help.  Who knows-- I haven't done this long enough to know how that all works.

ANYHOW... the big news is that I'm going into REMISSION & I get to start to lower my dose of Prednisone!  As of tomorrow, I'll be on 40mg a day rather than 60mg.  Its going to be a very slow process.  High doses of Pred for long periods of time shuts down your adrenal glands so they have to be given time to "wake up" or bad things happen.  Studies also show that the FSGS can come back if you taper too quickly.  So I'll be on 40mg for another 6 weeks.  I'll get more testing in 2 weeks then in 6 weeks.  After 6 weeks, hopefully I can drop another dose.

40mg is probably still enough to keep me going on the side effects, which sucks, but its better than 60.  And we're moving in the right direction.

And P.S. the nurses & dr. at the nephrologist office love me.  I'm charming like that. J

Up

My weight.

It keeps going up.

Why??

Because I keep eating.

I eat a lot.  My appetite is huge.  I can't feel full.

And I'll eat anything, but I really prefer ice cream.

I've accepted that this is part of the Prednisone.  But I just don't want to buy new clothes in a bigger size. Shopping is annoying.  And expensive.

And I really would prefer to be skinny.

Chubby Cheeks

My {almost} two-year-old does this most adorable thing where he pinches your cheeks (or his own), sticks his lips out and says, "Chubby Cheeks!"

Well he definitely has more to grab on to now.

This is kind of a "before & after" shot.  The first picture was taken a few weeks ago.  I was on Prednisone then.  I picked this picture because its not my favorite picture of me.  I didn't want to compare my face today to my best picture, just a normal one.  

Tell me you don't see it now. 

I want to share another "before & after" with you.  This is Lindsey.  She's in my support group for FSGS online.  My blog post yesterday inspired some of the girls to share some photos.  Lindsey is in her early 20's & was on Prednisone for 6 months.  It unfortunately didn't work for her but she's doing well now.  The "before" is when she had been on the drug for 3 1/2 months.  The "after" is her now.  

Her "before" picture completely breaks my heart.  She was in college & had to deal with this.  Physical changes are SO SO hard & no one can tell me otherwise.  

At least I have hope that I will go back to normal.

I am really grateful for the internet the ability I have to link with other women who know what I'm going through.  The support & sympathy I've received from my friends & family has been tremendous & irreplaceable.  I have felt so loved.  But I am grateful for the additional love, understanding & empathy I get from these women.  

Moon Face

Anyone who says they can't see the change in my face is a BFL.  That's right, BIG FAT LIAR.

I have been able to see it for over a week.  Its been more & more noticable lately.  And today I got my first confirmation.

I went to the chiropractor for the first time since December.  I saw her for several months after my car accident & now, probably because of Pred, my back KILLS when I lie down.  The muscles cramp and it feels like someone is compressing my spine.  So I went to get adjusted today which was AWESOME...

But back on track...

I was updating her on my condition & told her I was on Prednisone & what side effects I was having.  When I mentioned the weight in my stomach & face she said, "Yeah, I can tell."  {I wasn't offended.}

In some ways, its nice to finally have someone confirm what I already knew.

But mostly its just depressing.

I don't like to live in denial, and I'm REALLY REALLY grateful that I don't have more side effects from this drug.  I really am.  But physical changes are hard.

And we have family pictures next week.

Good thing my sister is a photoshop wizard.

Back in the saddle

I don't really know why, but by Wednesday I was back to feeling pretty good (PRAISE THE LORD!).  I am pretty sure I'm getting the "moon face" & I'm super ticked about my hair growing in darker but whatev.  Anyhow, I've been enjoying not feeling like crap.  I even got my front entryway painted last night.  It looks awesome & I can't wait to get all of the stuff up on the walls I've bought/planned.

But THIS is the big news... after pretty much a 4 month hiatus, I went to a spin class today.

I KNOW!

I'm AWESOME!

JK

Well sort of.

I've been really missing the gym.  I joined last May & got totally addicted to Spinning & Body Pump.  But because my thyroid was jacked I didn't LOOK like I worked out 6 days a week.  And then I started to feel yucky at the end of the year (which I now know I can blame on my piece-of-crap kidneys), so.... I totally stopped working out.  I tried going in January ONCE & it about killed me.  After that, I froze my gym account & just hoped I could get back someday.

Well, as of April 5th, my account was unfrozen so I went today.

And it ROCKED.

I have a favorite teacher who is seriously the motivational lady I've ever met in my life.  I love her.  She's pretty much my hero.

I was super afraid it would be as hard as it was when I first started last year.  But it wasn't.  I definitely had to take it slower but really, not too much... it felt awesome.  I freaking love spinning.

Yay for tax season being almost over so I can let my addiction take over again!  And maybe now that my thyroid is balanced & I'm getting off the pred, I'll actually maybe LOOK like I work out??  Maybe??  Oh well, whatever... it makes me feel like a million bucks, and like I can do anything, so I'll do it anyway.

Symptoms

Still feeling pretty crappy.  Prednisone compromises my immune system so I'm getting every single little virus that my kids bring home.  I still get muscle cramps, especially in my back when I go to bed.  Still struggling with sleep.  My energy is gone. Im constantly hot & sweaty. I'm emotional.  I'm definitely getting crabby.  I feel like I have less patience, less compassion & less control over it, especially where my family is concerned.  I got heart burn today. I'm putting on weight, especially on my belly. And this seems totally weird but has to be related because of the timing... my hair is growing in darker.  Blah.  I hate Prednisone.