Zapped

My energy is officially gone. I don't really know if it's the prednisone, the inconsistent sleep patterns, the virus I am getting over or the ridiculously high pollen count but crazy-productive Alisha is gone.

I miss her.

I have a favorite...

Drug, that is.  I take a lot of pills.  I have blood pressure med, cholesterol med, Vitamin D, Thyroid, Prednisone, diuretic, potassium... and AMBIEN!  Can you tell which one is my fave??

Ambien is awesome.  30 minutes after I put that little pink pill in my mouth, I am drifting off into Slumberland.

I was so tired yesterday.  And the kids were SO naughty.  It doesn't happen often but I came to the choice at about 7pm to either beat my children or put them to bed.  So they went to bed.  I picked up, took an Ambien at 7:45, snuggled with the baby until 8:15, put him in his bed, and was dreaming by 8:30. 10 1/2 hours of sleep.  Heaven.

So THAT is why Ambien is my favorite drug.

Success!!

I'm sitting at my nephrologist's office. I just got my 4th dose of iron but more importantly, I got the results of my 24-hour urine test & blood work I did Tuesday.

Drum roll please....

After 2 1/2 weeks on Prednisone, and a gluten-free diet... I am down to only 1 GRAM of protein in my urine! (I had 5g before)

I know that means nothing to most but it's REALLY GOOD NEWS for me!!! Dr. B said if it keeps going down, I can start my taper at 6 weeks. I'll have to taper really slowly off the prednisone but the lower the dose, the fewer the side effects. I am so relieved!

First GF Meal

So I've been eating Gluten Free for 2 weeks now & have done really well.  Its a lot easier now-a-days that it was last time I tried it.  There are a lot of options but tonight I made my first official gluten-free meal.  It was Buckwheat Blueberry Pancakes from Oh She Glows.  They have chunks of banana in them too.  Delish.

I'm really glad I bought my gorgeous Komo grain mill.  I still make whole wheat bread for the fam but its MUCH cheaper to grind your own alternative flours too.  I used it tonight for these pancakes to grind up some buckwheat groats & brown rice.

Tomorrow I'm going to make GF bread!  It HAS to be better than the nasty store-bought Almond Rice bread I bought.  GA-ROSS.  Seriously.

Blessed

I just finished my 2nd week on Prednisone.  It has kind of rocked.  It forced me to eat healthy things.  I have still been juicing lots of veggies and some fruits & I've found wonderful concauctions that don't taste too darn bad.  I really should post pictures-- its amazing.  Tonight I filled up my entire big colander full of spinach (from my garden), kale, cucumber, sweet peppers, celery, parsley, carrots (also from my garden), apples, lemons, an orange, & a pear.  It made enough for 3 big cups of juice.  I then added a little pineapple juice to it (which has to be kept separate until drinking).  I'm loving it.  I've also been 100% gluten free. I've done it before but I'm a much better cook now so I'm actually not missing gluten at all.  I've been making some rocking meals.

Last week's lack of sleep was getting a little disconcerting but I've found that 1/2 an Ambien is enough to get me a good night's sleep without being hung over.  The Ambien was poached from a friend because of an insurance hang up trying to get my Lunesta on Friday.  I didn't have time to make it to the pharmacy today but hopefully I'll have it tomorrow.  I don't want to take a pill to sleep every night so there are going to be some nights with little sleep but I caught up this weekend & it felt nice.

I'm still on overdrive-- always having to do something.  My house is really clean.  For me, anyway.  I'm able to stay on top of it & that's not a talent of mine {usually}.

Now here's for the great news-- at my appointment on Friday, my dr. took a urine sample.  They put one of those test strips in (like they do at the OBGYN when you're preggo) to test what's in your urine.  When I first saw her, I had so much protein that it couldn't be measured on the strip.  After my first 24 hour urine test, I was dumping 5+ grams a day.  On Friday, my protein in my urine was low enough to be measured.  So that means that whatever is going on is working.  Whether its the prednisone, or the gluten-free diet, or whatever... (I personally think its both).  YAY!

I've been doing my second 24-hour urine test today-- nothing like having an orange jug of pee in your fridge.  See-- here's proof.  You're welcome. (That's my green juice from tonight there too!)

I'll take it to the lab tomorrow, get some blood work too, & find out results Friday!

Heart Racing

It's 3:18 a.m.  I didn't sleep well last night (as in Wednesday night), didn't take a nap today (Thursday) and still have no ability to sleep or even be tired.  I yawned a couple of times 20 minutes ago so I went to bed.  And laid there.  Awake.  My heart is beating really fast... weird.  Sleep isn't going to come.  My kids will be up in 4 hours.

Today/yesterday, I got showered, ready, got the kids ready, went & got Max's hair cut, cleaned the house entirely, did laundry, did odd projects such as wiping walls & doors, dejunking clutter areas, hired some guys to spread mulch in the yard, worked & then my grandparents got here around 3pm for their annual visit to Texas.  I drug them to the garden center, bought flowers, came home, made dinner, ate, cleaned up, went & bought more needed flowers, came home again, put everyone to work & planted all said flowers.  We finished just before dark but needs a few more flowers so I'll go back tomorrow.  Everyone went to bed around 11:30.  I watched 3 shows.  Then read a lot on the computer.  Then went to bed, as I said before.  Now I'm here.  It's 3:22 a.m.

Shouldn't I be exhausted?

Instead of being tired, I'm planning more projects.  That front hallway is getting painted & I'm getting a picture gallery up next.

I have a sneaking suspicion this isn't going to last.  It can't.  I'm kind of getting freaked out.

What's making me feel so good?  My thyroid is finally working.  I am no longer anemic.  I'm on steriods... ahhh... damn steroids.

I found a new blog called FSGS Sucks.  I am so happy.  I feel like its another lifeline.

I still can't believe I freaking have Chronic Kidney Disease.

Maybe tonight I won't sleep at all.

Definitely asking for Ambien tomorrow.

Waiting for the other shoe

I am totally kicking this drug's butt.  I've LOST a few lbs, I'm super productive & happy.  But I know that won't last... most people that didn't have side effects right away eventually got them after about a month on the drug.  I'll just enjoy it while it lasts.

The side effects I have had so far are sleeping issues & muscle cramps.  Yikes!

But still no complaining!  I might ask my dr. for Ambien tomorrow.  We'll see.  I really love that stuff.

What's the opposite of crash?

I couldn't wake up all weekend.  Now I can't go to sleep.  Is this what they were talking about?

Crash

I went to sleep late Friday night/Saturday morning after hours of laughter & singing my heart out at the Reba concert with my friends.  And I still haven't woken up.

I dragged myself out of bed yesterday, ran through the motions of the dreary rainy day, even took a nap... took the kids to a birthday party that I vaguely remember... then crashed again as soon as they were in bed.

I slept for 12 hours.

And I'm still not awake.

Maybe Reba and being out till almost 1am was too much?

Screw it-- I'm 29.  I'm not going to behave otherwise.

Food is Fuel

That's what I keep telling myself.

I'm really missing my "normal" diet.

 Veggie juice... not so good.  I can get it down but... man... its hard sometimes.  I just want to eat a sandwich on my home-made whole wheat bread.  Its really so delicious.  And tempting.

But FOOD is FUEL.

I've gotta have some treats for sure, but I need to remember that I'm not eating recreationally anymore... I've got to put in my body the fuel that will HEAL it.

The good news is, whether its how I'm eating, the iron infusions (just got my 2nd one today!), or just plain luck, I feel really good.  I have energy.  I'm capable of being productive.  Eat THAT Prednisone!

Cereal

I really like cereal.  A lot.  It is my go-to comfort food.  Probably 75% of my diet when I'm pregnant is cereal.  I just love it.  Its fast, its easy, its delicious, there are lots of varieties...

I'm really missing cereal.

I've done well today eating gluten free/low sodium/minimal dairy/low calorie.  Its more work but doable.

But here I am hungry.  Not physically hungry, mentally hungry.  Craving cereal.

So I juiced carrots, applies, celery & spinach instead.

Didn't really do it for me.

But I feel good about sticking to my convictions.

And I just feel good in general.  Energy level is good.  I can't complain!

End of Day 1

Well I haven't told anyone off or killed anyone today & I still look normal.  I have noticed some side effects.  I'm warm, my mind is foggy & I'm having some bizarre pain in my lower back and left leg.

I've decided to be in as many pictures for the next few weeks as I can...you know... before the moon face comes.  Then there will be NO pictures.  Maybe I should go get fam pics taken just in case...

I've also decided, after reading A LOT today that I'm going to go gluten-free.  There's been no medical research proving that gluten effects your kidneys at all but I have read account after account of people with FSGS having great success with it.  Some even refused steriods, went gluten-free, and went into complete spontaneous remission.  I'm not going to go off the pred but hopefully it'll help things along so the duration can be shorter.

It's going to totally suck but that seems to be there general theme of a chronic illness.  I just think that with most things, a lot can be solved (and a lot of medications avoided) through diet changes.  I've definitely found that to be true in my life.  It takes a lot of discipline.  Sometimes I have that & sometimes I don't.  But when it comes down to my health, I've gotta suck it up and do it.

Some people also say to go no dairy.  I'm going to worry about that one later.

The fact is that pred takes every single carb/sugar and turns it into fat.  There are some people who religiously follow a 1200-1400 cal diet and STILL gain weight steadily on pred.  THAT BLOWS.  I don't want to wait until I'm 20 lbs over weight before I try to do something about it.  It starts now.

First dose....

Just took my first dose of prednisone and washed it down with this... Here's to my crappy kidneys!

FSGS

I FINALLY met with my nephrologist, Dr. B, today to discuss the findings of my biopsy.  She told me over the phone when I was in Utah that my diagnosis was Focal Segmental Glomerulosclerosis. Since then, I've done a lot of researching on the disease & treatment so I would be prepared for today.  I found a GREAT website that has up-to-date treatment & research done by doctors.  I wanted to make sure it aligned with what my neph said.  And it did!

I start Prednisone tomorrow.  Its a high dose (60mg) with hopes that within a few months, it'll jump start my glomeruli (protein filters in my kidneys) to start working.  Prednisone (a corticosteriod) comes with some nasty side effects.  Weight gain, severe mood swings, hair growth, softening bones, etc... its bad stuff.  I read somewhere that it causes fat deposits to show up on your face, back of the neck & stomach.  Great...  I'm going to look like Quasimoto.

But for real-- I've also read on FSGS support sites & blogs that the side effects of the steroids were so bad, some people chose to go off them.  They said they'd rather live a shorter life than be on them.  It makes people confused; saying things they don't mean.  Some people don't have any control over their moods & it can be severe.  One girl said she had blond hairs up to an inch long growing on her face and sweats uncontrollably.  Another lady said it made her really aggressive and confrontational.  If something, anywhere, made her upset or offended her, she couldn't stop herself from getting in that person's face.   Another girl said she doesn't sleep at night & cries all day.

I am a firm believer that humor is essential in getting through difficult times in life.  So here's to the humor that is coming my way... and everyone: watch out.