Epiphany & change of plans

Right as I was clicking "Publish" on that last post, I had an epiphany.  The only other drug I was still on, besides prednisone, was an ACE Inhibitor (Blood Pressure med).  I said was because I stopped taking it a couple of weeks ago.  I was only on a low dose & my blood pressure was fine.  I was on it because ACE inhibitors can help preserve kidney function &... as I'm now remembering... help lower protein in the urine.  DUH!

So I'm hoping & praying that my little spike in protein was due to going off that drug & not because I'm steroid dependent.  I called my dr, who of course didn't get back to me, so I asked the REAL experts-- my friends on my FB group.  I got some great advice.  My inclination was to go back down to 7.5mgs of prednisone (where I was before today) & go back on my ACE inhibitor so see if it helped.  But one very smart gal pointed out that my protein decreased between my two tests... so the proteinuria may have been just my body adjusting to the change.  Maybe I'll get back down to normal range on my own.

Another girl pointed out that anything under 1g is considered partial remission so I'm still doing ok.

I seriously feel so much better.  I did take 20mgs of prednisone today so I'm going to take 15mgs tomorrow, 10 on Thursday then be back to 7.5 Friday, just so it doesn't shock my body.  I'm going to do a 24-hour test next week & see how that goes.  Cross your fingers for me!

Relapse update

Yesterday afternoon I did a spot test & there was definitely some protein in my urine.  Then I checked this morning again & there was a little but not much.  I've checked my iPhone app about a million times today & the test results from Thursday's 24-hour test are still not up so I just called Dr. B's office.  The MA told me my protein came in at 572mg.  That's about 40% less than the previous week, so that's good.  But its still too high.  

I upped my prednisone to 20mg.  I'm back on the diuretic every other day because I'm retaining water.  I'll do another 24 hour urine in a couple of weeks so see how I'm responding.  Hopefully that'll be enough to get it back down to below 150mg & then I'll try to wean off again.  

This really really sucks and that's all I have to say about that.

Nervous & Anxious

I am sitting here at the lab waiting to turn in my pee jug. I'm feeling very anxious and scared. And emotional. I really allowed myself to think about what this all might mean for me last night.

If I'm having a relapse, it probably means that, like most people with FSGS who at first respond to pred, I'm steroid dependent. That changes my prognosis. That means more & different immunosuppressant drugs.

I know what this means because of the experiences of my wonderful friends in my FSGS group. I read about their struggles every day with side effects of this disease, side effects of various drugs, drs appointments, trying to grow their family, trying to be good wives, mothers, friends, coworkers... Being so tired, so swollen, so sick. They are my heroes.

I keep trying to tell myself that this is a fluke. I'll be fine. Hoping hoping Hoping.

Relapse?

Well I finally got around to checking my results on my iPhone app last night around 11pm... I scrolled down each item & each was in the normal range... until I got to the bottom.  Protein... 961mg.  Normal is <150mg & last 24-urine test, I was at zero.  I was so confident I wouldn't have a relapse that I waited this long to test again.  Last time I tested, my dose of prednisone was 30mg.  So if I am relapsing, I have no idea what dose in between 30 & 7.5mg I started spilling protein at.

I'm kind of in shock about it.  I did NOT expect it at all.  Dr. B said that if my protein starts going up, to go back to the dose where I was previously in remission.  I don't want to go back to 30mg!!  I just started seeing my moon face go away, I have lost a few pounds & have strength back.  It's so depressing.

I'm really hoping it was a fluke. Or... I've never known for sure if my GF diet is really helping.  Maybe I had some gluten & it caused me to spill protein.  You can also spill protein for a bit when you're fighting a virus. Or when you're stressed.  Or maybe the lab got my results mixed up with someone else?!?!

I woke up this morning & did a test strip & it said there were only trace amounts of protein.  I'm questioning that because I did a test strip just a day or two before my last 24 hour test & it also said I had low protein.  So I'm doing another 24-hour test today before I up my dose of prednisone.  It should take about a week to get my results & then I'll be able to move forward from there.


Please pray that I'm not having a relapse!

Strength

I had a follow up with me endocrinologist today.  He's the one that found all the protein in my urine & diagnosed me with with kidney disease.  I like him.  He's a good doc.  We sat down & had a little chat about my thyroid, my kidney disease, my diet, my weight, my plans to have a baby... he suggested I get a bone density test once I'm off prednisone & before I get pregnant.  I thought that was a marvelous idea, especially since I can't take extra calcium while I'm pregnant due to kidney stones.  I got blood drawn & we'll see where my thyroid is at.

Prior to my appointment, I did some lab work at Quest.  Last time I saw Dr. B (kidney doc) she gave me 3 sets of lab sheets, 3 pee jugs & told me to space them over the next few months.  I hadn't done any yet so I figured while I was out, and without the kids, I'd get that done.  I'll find out if I'm spilling any protein (pretty sure I'm not) and where my kidney function is at.  Should get those results on my handy-dandy iPhone app in a few days.  I love technology.

Anyway, that was just a boring-schmoring update on my health.  The exciting news for today (for me) is that at Body Pump tonight, I was able to lift my "normal" weight (normal meaning before I got sick) & even went heavier on squats.  And I survived.  I really experienced muscle weakness as a side effect of the pred.  I didn't realize it would just come back like that.  Kinda crazy- especially considering I haven't done Body Pump since before my trip to Utah.

Now for loosing this weight... I'm starting the big push tomorrow.  That's why I just finished a huge banana split with caramel sauce & hot fudge.  Yum. :)

Ten

I made it. As of today, I'm officially at 10mg of prednisone. This is the dose where I'll {hopefully} be able to feel "normal" and loose this weight. I'm lucky that I only gained around 15 lbs. I have big plans to get those lbs off as soon as I get back in town.

I've felt pretty darn good since dropping to 15. I feel more myself & I definitely am less irritable which is nice. I did an ok job of hiding that part but it's nice to not feel irritated so much. I still am rocking the extra blonde facial hair. Really hoping that goes away too.

I'm in Utah right now & my friend who just came & visited me in TX a few weeks ago said she notices a difference in my face; that the "moon face" has gotten a little better. I really haven't been too self-conscious about the weight gain or the moon face or any of the physical changes. Sure, they've been hard at times but I've accepted that they're just part of it all. But I do have to say that I'm looking forward to getting back to my normal self all around.

From here on out, I'll be dropping 2.5mg doses until I'm off this nasty drug. That will come at the end of August. Can't wait!

Irrationally irritated

That's me.  All of the time.  When people and things keep ticking you off or annoying you over & over, you start to get the idea that its probably not really other people's fault.  Its yours.

Not EVERYONE is annoying me these days.  So if you've spent some time with me lately, don't think I mean you.

I hate this feeling.  I feel cranky & out of control of my emotions.  And of course the people that suffer are my husband & children.

My energy level goes through ups & downs.  Right now I'm on a down, and have been now for several days.  So that's not helping.

I'm in a vicious cycle of being so exhausted after lunch that I HAVE to nap to make it through the day, then I can't go to bed at night because I've napped, which means I don't get enough sleep... and the cycle continues.

So anyway, friends, family, people I love... if I seem out of sorts its because I am.  Don't take it personally.

(P.S.  I made my first ever gluten-free cookies.  They were ok.  Just ok... but I ate like 2 dozen of them anyway.  Why can't I have self control???  So, needless to say, I'm not baking anymore unless its not GF & therefore off limits.)

All worked up for nothing

I was seriously sick to my stomach when I was driving to my doc appointment on Friday.  SICK.  I have major authority pleaser issues.  For reals.

Anywho-- My labs came back FAN-FREAKING-TASTIC.  No protein.  NONE!  I started out at over 5 grams!  And all of my other numbers, including my cholesterol, were in normal range.  So when Dr. B asked by my prednisone dose & I told her I'd gone down to 30, then 20 on my own, she was like, "Ok."

All of that worrying for nothing.

I don't think she was that surprised.  She knows I do my own research and the #1 thing I've always liked about her is that she actually appreciates that.  Most doctors are annoyed.

So she pretty much told me to keep tapering as I see fit.  She gave me 3 lab sheets & pee jugs so I can do a 24-hour urine a few times over the next few months & told me to not come back for 6 months!  Wahoo!

Next stop-- loose this freaking weight.  I hear 10mg is the magic number.  I'll be there in 5 more weeks.

20 mg

So here's the update-- 20mg has been easy.  The only noticeable change from 30mg is that I'm not craving sugar as bad.  So that's made it easier to not eat crap.  I stopped buying all the ice cream a while back but when those cravings hit, and you find yourself digging through the baking supplies just to find some crusty old chocolate chips, you know you've gone too far. Glad to be past that.

My energy is good!  I finally bit the bullet & paid for my kids to have a day-care membership at the gym. Its RIDICULOUSLY expensive so I have refused in the past & just gone early or late.  But its summer.  In Houston.  It's SO !@#$ hot already!  Hubby is working all of the time... kids can't play outside in the afternoons... so we did it.  And it's been lovely.  Gym every day.  The kids LOVE the day-care.  Win-win. (Except for the loss in the pocketbook).

Oh & I thought I had put on a few lbs but noticed some slight swelling in my feet last weekend after wearing heels all night.  Took a diuretic Sunday morning & lost 3 lbs in under an hour.  Ok, so I know it was just water but it still felt good.  So overall, I've gained 11 lbs since starting prednisone. I've only gained 1 lb. since I dropped to 30 (then 20) mg.

I'm happy with where I am.

Cruisin

Today has been awesome.  Rewind to earlier this week... I was exhausted.  Couldn't sleep enough.  I'd go to bed super early, sleep hard & wake up exhausted.  The gym was excruciating.  Usually once I'm there I pep up & get into the class.  Wednesday morning was particularly hard.  EVERY MINUTE.  But then-- for some reason, yesterday I pepped up.  Felt good.  So today I went to my normal spin class & then went back for a new Core class my gym is offering.  They did this big event today to bring in the new classes... it was super fun.  I wanted to stay for more but didn't want to push it.

I can handle these highs & lows.  BUT.... I have this gnawing fear in the pit of my stomach, every time I go through a low point, that its going to stay... I don't know how I'd live like that!  Tuesday night I went to bed BEFORE my kids did.  I was trying to finish up some laundry before I headed to sleep & I could barely lift the basket.  That kind of exhaustion, day after day, would be too much for me to handle.  And I know a lot of the girls from my group deal with that on a regular basis.  They are rock stars.

Oh! Oh!  I almost forgot!  I met a lady at the gym today who is 50+ and SHE had problems with her kidneys in her late 30's.  Went on prednisone, went GLUTEN FREE, dealt with the kidney stuff off & on for several years and has been TOTALLY fine since she was 35.  She's started eating gluten again a while back, wasn't feeling well, was putting on weight, her dr. told her to go back on completely gluten free & she looks & feels awesome.  You seriously have to look close to believe that she's 50.  She's my new hero.  I know it doesn't work like that for everyone but I hope that my story is like her story when I'm 50.

Lastly... I've now been on my 30mg of pred for 3 weeks.  My plan is to drop to 20mg tomorrow.  I did my bloodwork & 24-hour urine yesterday.  I see Dr. B this Friday.  I did a test strip this morning and there's almost no protein in my urine (YAY!) so I think I'm going to go ahead and drop to 20mg.  What's still TBD is if I'll be brave enough to tell Dr. B that I'm weaning myself faster than she told me to.  I'm totally 100% confident with my decision... but... I have authority issues.  Just a little quirk I have!

I'm now up 15 lbs.  I can't WAIT to get low enough on pred that I can start to loose it.  I hate looking at pictures of myself.  I try to not worry about it but its hard.