Goodbye 2012

I'm feeling really emotional today, the last day of 2012.  What a whirlwind of a year its been.  This time last year is when I started to put on the water weight - gaining about 16 lbs in 2 1/2 weeks.  I found out I had kidney disease in mid-January, had a biopsy January 31st, diagnosed with FSGS a few weeks later & started Prednisone March 6th.  I was in complete remission by early June, relapsed in late July, started Cyclosporine September 12th & was done with Prednisone on October 18th.  I gained 16 lbs on Prednisone & found out in November that I should not have more children.

That is why I haven't blogged.  All I've ever wanted to be in life was a mom.  Never, at any point, did I think I was done having children.  I knew the instant that I heard Max cry for the first time that I had to do it again.

I cried the day I had my appointment with Dr. A (my MFM dr) but really have felt a lot of peace since.  I've had my sad moments but I'm doing ok.

Since I found out, I have put a lot of energy into clearing out all of the baby stuff (the space feels good!) & taking control of my life & health.  I cut out sugar, I work out like a crazy person & I've lost 11 lbs & am back in my old clothes.  I found out about my new job with BYU-I right after the other news & felt the Spirit whisper that the timing was no coincidence; this is just one way my Heavenly Father is taking care of my heart.

I have big plans for 2013.  2012 brought me a lot of trials & more hard days than I ever want to have again. But it also brought me a lot of blessings.  I have a wonderful husband, 3 gorgeous, healthy, smart, loving children, I have the Gospel, I have fantastic friends, a supportive family & I have the drive to be as healthy as I can be for as long as I can be.  I am in control of my life.  Its going to be a great year.

Sayonara 2012!  Bring it on 2013!

Down week

I should have been posting more but I've just had a down week... I'll start with the good news though-- I'm off Prednisone!  Its been about 10 days & I'm finally starting to feel like myself again.  I've been SOOO TIIIRRREEEDDDD.  I had a seriously bad head ache on Sunday but haven't had any since.  Like I said, the fatigue is starting to get better but I'm sleeping a lot still so that's helping.  I'm still getting some joint pain.  I haven't been able to loose weight yet and... my hair is still falling out.  IN CHUNKS.  Its noticeably thinner.  Hope that stops soon or I'm going to start to have bald spots!

I did labs last Monday & finally got the results this week.  They weren't super fantastic so I was kind of depressed about that.  Then there was a thread going on my FSGS group talking about... well, I don't really remember what it was talking about but there is one girl who is on dialysis right now waiting for a kidney.  She said he kidneys were stable for SIX YEARS before she had a baby & then she was in kidney failure 14 months after delivery.  That definitely gave me pause.  I'm absolutely sure she will never regret that decision because it allowed her to become a mother to a beautiful little girl.  But me?  I'm already a mother.  What if me having a fourth child compromised my ability to take care of the three I already have?  Now, that's a big WHAT IF.  But its definitely something to think about as we prayerfully make our decision. In the past, I had been focused on getting stable & whether I could bring a healthy baby into this world.  I hadn't really given much thought to my health afterward.

I was pretty discouraged for a few days; its such a battle between heart & head.

I spoke with Dr. R (my neph) on Thursday & he wasn't as discouraged about the results as I was.  We also talked about the dangers post-pregnancy to my body & he said he's given lectures on that topic.  So his homework over the next week or so is to look up some of the studies regarding that topic and send them to me & Dr. A (my MFM doc) so we can talk about them at my appointment on the 8th.

I often get impatient & want to know right now what's going to happen but I keep being reminded to be patient... things will work themselves out.

Not for the faint of heart

Everything with the Cyclosporine is going well so far.  Haven't gotten sick.  Haven't grown super bushy eyebrows.  I might have a little more hair on my face but luckily its blond.

It's the prednisone weaning that's giving me problems.  (Wow, that's putting it mildly)  The withdrawls are ROUGH!  Going from 20mg to 10mg... I thought I was dieing.  I change doses on Wednesday.  By that Thursday night I couldn't even move.  I felt like I had the flu.  I was having head aches almost every day as well.  I can't take Advil or anything so I usually just drink a Diet Dr. Pepper for the caffeine.  But I don't like drinking soda too often.

So I emailed Dr. R & of course he was fantastic & wrote right back.  He told me to try splitting my dose; half in the morning, half in the evening.  It has REALLY helped with the head aches.  But then I was having problems going to sleep because I was taking some of the steriod at night.  So I've started taking Melatonin which has helped.

A new, fun side effect of the taper is that I'm loosing chunks of hair.   I luckily have a lot so I'm hoping it won't cause too many problems.  But I'll probably have to cut it so the regrowth isn't weird.  I guess it'll depend on how much I loose.

This Wednesday & Thursday (going from 7.5mg to 5mg) didn't go so bad.  I was tired on Wednesday but felt good on Thursday.  Thought I skipped the rough part.  No sir... it came with a vengeance yesterday.  I was so tired I napped when the kids napped.  After being asleep for a while, I could hear that the big kids were up but I literally could not wake up.  Finally I heard the baby calling for me so I got up.  But it was really hard & I could barely get him out of the crib.  I spent the next 2 hours on the couch.  I didn't have the strength to stand.  I felt a little better this morning & now I feel good.

I know I can taper slower but I feel like I'll still have some of the symptoms & it'll just prolong it.  I know I have a rough couple of weeks coming but really can't wait to be off this crap.

As far as the FSGS, I don't really know where I stand.  I think I'm spilling less protein but my test strips expired so I think they're not working right (they still say I'm spilling a lot).  I'll do my cyclo bloodwork next week.  I feel like I won't have a good grasp on how I'm doing until I'm off the pred.

So there it is... my super boring update.  But that's what's up.

Sleepy

The burning in my stomach only happened the first few times I took the Cyclo.  So far I haven't really noticed anything else.  There's some extra hair on my face but that might be left over from the Prednisone.  I've gotten shakey a couple of times but who knows where that's from.  But I am SO SO wiped out right now.  I just feel like crap.  I'm extremely tired but have a hard time going to sleep at night.  I also have a head ache today & my muscles are really sore from my workout Tuesday.  I think the fatigue & head ache might be from weaning off the prednisone & I'm sure my blood protein is getting lower since I'm still spilling so it might be hard to recover from workouts.  Who knows.  But I skipped the gym for the first time in a month yesterday.  I had a busy day but I was also just wiped out.  I'm considering skipping it again today.  That's when you know I'm really tired!

Cyclo Day 1

My new tiny little pink nasty pills cost me ONE HUNDRED BUCKAROOS.

I told the pharmacist that insurance was pointless.

Then he told me without insurance it'd be $700.

Fine.  Humph.

I took my first dose at 9pm.  My stomach feels like its burning from the inside out.

This is awesome.

Reconfirmed- I really like my new doc

I'm back to my happy place so that's good. I wasn't able to get my hands on the Cyclo today- pharmacy has to order some. I should get it tomorrow afternoon. I've done more reading on message boards about others' experience on Cyclo. Across the board, the opinion is that it's way preferable to steroids. Most people said the side effects were negligible. Also, many said the GI problems get better after the first couple of weeks. Some had some bad reactions but I'm hoping to not relate to that group.

I got TWO calls from my neph's office today. The first was from the MA I saw who just wanted some more info on my recent labs. Then, this afternoon, Dr. R called for more info. He was just reviewing my charts and wanted to make sure he had everything. Very thorough. I was so glad he called
because I had forgotten to ask him a question yesterday.

The question was about my anxiety. It started back up again around the time I relapsed and has gotten pretty bad some days, even with as much as I've been exercising. Dr R listened to what I said & we had a good conversation about my options. We decided that I'll wait to get off the pred & see where I'm at, since steroids can contribute to anxiety. I feel good about that.

I feel like I'm in very good hands and the communication is excellent. So happy I switched. SO SO HAPPY.

Oh and P.S. - in the spot check he did yesterday, I'm spilling an estimated FOUR GRAMS of protein now. It went up a whole gram in just a week! Even on 30mg of prednisone! Crazy.

New Doctor, New Drug

Yesterday was my appointment with my new doc, Dr. R.  He was really nice.  I really like the Baylor Clinic where I saw him-- everything moved quickly & everyone was super nice.  That means a lot to me.  Its almost more important to me that I like the office staff than it is if I like the doctor.  Almost.  Anyhow, Dr. R didn't say anything new or mind blowing-- just stuff I already knew; whatever the research says.

To back up to yesterday morning, I got my latest results from my 24-hour urine collection-- I'm back up to spilling 3 GRAMS of protein.  WOAH.  I totally didn't expect that, especially since I'm back on a higher dose of prednisone.  But it was good to have that information going into my appointment because I am sure the prednisone isn't working like it did the first time around.  My only other option with the prednisone, besides to get off of it, is to go back up to 60mg, where I started in March, and start over.  Uh, no thanks.

So the next drug you try is called Cyclosporine.  Its the same drug most transplant patients are on.  It totally kills your immune system, so that sucks.  But it seems to work for a lot of people with FSGS.  The benefits, as compared to prednisone, are that there are fewer side effects.  I should be able to loose the weight I've gained, won't get moon face, mood swings, hormonal changes, etc... but Cyclosporine is known to mess with hair growth. Some have reported loosing hair & a lot have a reported more hair growing on face, arms, back {awesome}.  It also can cause severe tremors in your hands, GI problems (burning in your stomach) & weird tingling sensations in your hands & feet.  There are a lot of other reported side effects but those seem to be the main ones.

Dr. R said once you go on it, you stay on it for a year or two.  This is bad because I really want to have another baby & while there are many people who have had babies while on Cyclosporine, its considered a "Class C" drug for pregnancy, which means its not desirable to take it while pregnant.  It does cross the placenta.  I've read a bunch of studies & the findings are that it doesn't cause birth defects but can contribute to low birth weight & premature birth.  Prednisone is only slightly safer for pregnancy so I wouldn't necessarily want to be one that either.

I'll see Dr. A (my high-risk OBGYN) on November 8th & go back to see Dr. R on Nov. 13th.  So by then, I'll be completely off prednisone & I'll have been on Cyclo for 2 months, so we'll be able to see what's what.  It'll be very interesting to see what Dr. A will say.  I was really hoping to be in remission & off drugs completely when I see her but that's clearly not happening.  I'm sure Dr. A won't be thrilled about me wanting another baby.

So now to how I'm feeling... I've noticed a pattern in all of this.  Whenever I get bad lab results, a change in medication, doc appointments, etc... I go through a day where I'm ticked off all over again that I have this freaking disease.  I mean seriously... I'm 30 years old.  I eat healthier than most.  I exercise 6 days a week.  I just want to be HEALTHY!  This is a chronic illness; one I'll deal with forever.  There's a chance I could have a great life (health wise) but it seems like I probably won't.  It'll probably get worse.  Regardless of what the doctors say, the pattern seems to be that if prednisone doesn't work, you start on this list of drugs & treatments & never really get off that train.  This all just really blows.  I'm young.  I should be able to just have another baby if I want one & can afford one.  I shouldn't have a pill box like some 70 year old.  Its ridiculous.

I'm still kind of in that ticked off mode... I'll be over it soon.  I have a lot of anxiety about starting Cyclo but at the same time, I'm really REALLY excited to get off prednisone.  It'll take about 5 weeks.  CAN'T FREAKING WAIT.  It better be worth it.

Shoulda been

I shoulda been done today. If I had not relapsed, today was the scheduled day I would have taken my last little 2.5mg of the drug from hell. Instead I went up to 30mg today.

Who the heck knows if going up again was smart but 20 sure wasn't doing anything so might as well.

One "comforting" thing I found out today is that all of this crappy weight I've put on this week may just be water after all, even though the Lasix didn't take it off. A friend in my group said she finds she has to take it a few days in a row consistently for it to come off. So I've added it back to my pill box for the next few days. Cross your fingers for me.

It makes me feel so vain that the weight is the biggest deal to me, immediately anyway. But it's not about vanity. It's about normalcy. A normal person isn't as unhealthy as I am while focused so much on their health. Plus the looking different is hard on my psyche.

I'm really praying this new doc has some answers for me. I need clarity. I know I'll get much sicker than I am now buy I just don't like changing my doses willy-nilly & not knowing what the crap is going on.

Pity party #113- more to come

I'm feeling really alone today. And down. My kids have been really really hard lately. My husband works all of the time. I'm so grateful for his job and how hard he works but doing the single mom thing is wearing on me. I don't get a break.

This is the first time I've ever wished my kids weren't so close together. It's always been a lot of work but I've had 3 kids at home full time for over 2 years and have another year to go before N & A start kindergarten. They are so difficult to take anywhere. I feel like the overwhelmed mom who had one too many kids & is barely keeping her temper in check (sometimes I don't keep in in check). I don't want to be that mom.

Preschool starts next week. That'll help.

I've been feeling really crappy since going back up to 20mg. So far it hasn't helped my protein spillage & I've put on 3 lbs (in less than a week) all while working out every day and eating healthy. I'm serious- I kick butt at the gym. I work really really hard. I know it's doing something good but it's discourage when I just keep getting fatter all while eating salad.

I also just don't quite know how I'm going to have another baby. That's part of what makes me feel so alone. It's easy to say from the outside that I have 3 beautiful, healthy children. I am so blessed. It should be enough. So even my friends who understand my illness might not understand why I feel I need to have another. I just do. But it scares the crap out of me.

Alone. That's how I feel. Really really alone. And that's no one's fault. I have fantastic friends and family who listen & are supportive. It's just... Hard. This is hard. Too hard.

Cha-Cha-Changes

An update on the relapse... Things didn't improve much with going back on my BP medicine so I upped my dose to 20mg on Sunday.  I've been feeling crappy the last couple of days but hopefully will adjust soon.  I would have loved my doctor's input on it all but I am sick of calling her twice a week & never hearing her.  Last time I called & talked to her nurse to see if I could get more lab orders, she said, "Oh, Dr. B wanted to see you."  HOW WAS I SUPPOSED TO KNOW THAT?  So frustrating...

Which brings me to my exciting news: I have an appointment with a new doctor!!  I've spent hours in the last week trying to find a new doctor that has privileges at the hospital I want to deliver at when I have a baby.  Its a new hospital so no one could seem to tell me who to call.  But to make a very long story short, some helpful nurses (who don't even know me) lead me in the right direction.  My new doctor specializes in pregnancy & chronic kidney disease!  Sounds like a perfect fit!

My appointment is 2 weeks from today.  I'm super excited to go to someone who actually knows what's what.  Yay!

Sucky Labs

I got my lab results from last Tuesday.  Clearly, from the title, they didn't turn out great.  I'm now spilling over 1g of protein & my blood protein, albumin & globulin are low.  Everything else was in normal range but my Chloride was at the very tip-top of normal, whatever that means.

So I recognize that there are many many people with FSGS that would consider my protein spillage minimal. But just 2 months ago I was spilling NONE.  I was in complete remission.  So this really sucks.

And I've been feeling bad, which now makes sense.  I couldn't even get myself out of bed Sunday morning.  I've just been so fatigued.

My last ditch effort before going back on a high dose of prednisone is to go back on my ACE inhibitor.  I never said in the previous post why I went off of it... I went off because its a "black box" drug if you're pregnant, meaning it causes birth defects.  I'm not pregnant but I'd like to be in the near future.  But I have to be off of the ACE.  So even though going back on it is not the biggest deal in the world, and its far more desirable than going up on my pred, its still kind of a blow.

Another new "fun" symptom I've been having lately is knee pain.  It started last Monday after my spin class.  By tonight, they had stopped hurting but hurt again during tonight's spin class.  I'm not sure if this is because of the prednisone or because of my disease but it really pisses me off.  Exercising as much as I do is for my mental health.  Its clearly not doing anything for my physique.  I discovered my love for cycling over a year ago & if I can't do it anymore I'll really really be pissed.  Like seriously pissed.  I have struggled off & on with anxiety for almost 2 years & have been able to avoid medication because of exercise.  But that's another post...

I really am having a hard time.  I cried almost the entire spin class, which seems ridiculous, but it was a good place to do it because its too loud for anyone to hear & my tears can drip away with my sweat.

I am just in mourning.  That's the long & short of it.  I'm mourning for the death of my health.  I'm mourning for the death of some of my dreams.  My 30th birthday is on Saturday.  This is not where I wanted to be at 30.

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.

Rebel

I'm going rouge. I went ahead and dropped my prednisone dose to 30 mg as of last Sunday. I just couldn't find any good reason, in all my research & talking to people, why I needed to stay on 40mg for 6 weeks. I looked on that website I found when first was diagnosed (uptodate.com) and it confirmed that my taper schedule was way slow. It also said the faster you respond the faster your taper can be; they recommend 2-3 months, and/or a 1/3 reduction every 2-3 weeks.

So I'm taking matters into my own hands and reducing 10mg every 3ish weeks (which is still slow). Haven't decided how I'll tell dr. B yet. I don't even see her till June 8th.

This rebellious behavior is not about me struggling so bad on the drug that I can't handle it. Aside from the weight gain, which is annoying, I'm doing ok. But at this point, with me being in remission, I have to consider the long term side effects of being on high doses of Pred. It's just not necessary to do that to my body and I don't feel good about it.

I do, however, feel good about my decision. I feel informed & in control of my health. But I'm scared to tell my doc because I'm a pleaser by nature, especially with so-called "authority figures." We'll see if I can be brave come June 8th.

My next 24-hour urine is scheduled for May 29th. A few days after that I'll drop to 20mg. Wish me luck!!

More numbers

I finally got a call about the lab results from my 24-Hour urine & lab work last week.  My creantanine is down to .87, which is good.  My GFR is 90, which is also good, & my protein is down to 85g which is awesome.  But I'm super depressed because I was hoping to convince her to drop my dose sooner.  But no.  I have to stay on 40mg for 3 more weeks.

So my 6 week mark on 40mg is May 31st, but of course Dr. B is out of the office that week & can't see me CLEAR until June 8th.  So I've decided to drop myself to 20mg on May 31st.  She'll probably not be so happy with me about that but I don't freaking care.  I really like her but I'm sick of how often she is out of the office & unavailable for appointments.  A week may not be a big deal to her but its like 2 lbs for me.

Speaking of... definitely the most prominent symptom I'm having is the weight.  I've gained 12 lbs in 7 weeks.  I am quickly growing out of my clothes.  Of course this is happening right at the beginning of summer, which makes it harder to layer & hide the fat.  I've never been this big except right after I have a baby.  By the time I'm finally off this drug, at this rate, I'll be bigger than I've ever been NOT pregnant.  Its seriously so depressing.

I've luckily been able to sleep better since dropping down from 60mg but the other side of that same coin is that I have really low energy, especially in the afternoon & evenings.

Another lovely physical side effect I'm experiencing is hair growth on my face.  Its growing in blond (thank goodness) but its still awful.  I don't want to get my face waxed because then I'll always have to.  But I might not be left with a choice.  When I went to get my eyebrows waxed, the not-so-tactful Vietnamese salon worker informed me that I need my lip & chin waxed.  Thanks lady.

The most depressing part about all of this is that my actual kidney disease isn't what's causing the problem right now.  That's in remission.  All of this crap is from this damn drug.

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.

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.