How does it feel? : FSGS Sucks

When this whole thing started, I didn't really tell anyone about it...I didn't think I needed to.  I was originally diagnosed with MCD, and at the time, I thought it was just going to be more of an inconvenience than anything else.  But then I was slapped straight by prednisone.

I'll admit this (even though I'm a bit embarrassed to) but I was pretty confident in my looks.  I felt like a fine wine..getting better with age (Good Lord that sounds corny :).  But prednisone took that confidence away from me...completely.  It devastated me, and has forever changed how I see myself.  It sounds dramatic, but I can't speak anything truer than those words.

Sadly, I never knew how much of my self was wrapped up in my how other people saw me.  I was intelligent, had a good degree from a great university, a good job, had traveled lots of places, and was newly married....

but I think I still relied heavily on my looks for that boost of confidence.  And when that is stripped away from me, and so suddenly and without warning, that person died.


I don't think I was fully informed about the potential side effects of prednisone.  In hindsight, I'm thinking my neph did that because he was worried that I wouldn't take it if I knew (and I can't honestly disagree with that rationale).  I started taking 80mg of prednisone daily on July 7th, 2006 (I remember this because we had friends staying with us from Sweden).  I had been an avid runner, and enjoyed the initial boost of energy that it gave me.  I'd get up at 5:00am because I couldn't sleep (another side effect) and run 5 miles.  I'd eat breakfast at home, then go to work and eat my "trucker breakfast" (a ham & cheese omelet or biscuits and gravy).  My appetite was insatiable (another side effect).  Hell, I even LOST 5 pounds the first 2 weeks because I had so much energy!  Other than that, though, I didn't notice much difference.

At the beginning of August, I dropped my husband off at the airport so he could go home to Sweden for work and to visit family.  I headed up to Chicago to hang out with my college roommate.  She hadn't seen me for awhile, but the look on her face when she opened the door and saw me is something I won't forget.  She kept saying how strange it was...that it was my voice, but it wasn't me.    The next day, I went into the city to stay with another friend of mine and go out for a night on the town.  I knew I looked different, but it wasn't until I actually saw pictures from that night that I knew HOW different I looked.  This is what I saw.

I was horrified.  I was ashamed. I was embarrassed.  And I was angry at what this drug was doing to me.

Two weeks later I picked up my husband from the airport.  I tried to warn him that I looked a lot different than when I dropped him off, but I don't think he really believed me...that is until he saw this freak of nature (me) standing by my Jeep.  He looked shocked, but that sweet man gave me a hug and told me he loved me.  And thank goodness for that, because I was TERRIFIED.

 Here I am on our 2nd wedding anniversary

Here's a picture of me from December of 2006, almost exactly 6 months after I started taking that awful drug.

Work was awful for me.  People I knew would pass by me in the hall, not even acknowledging me.  I know it's because they didn't even recognize me so it's not their fault, but it hurt.  I felt like a ghost.  And I wanted to crawl in a hole.

But it worked....prednisone, that is.  That picture above was taken when I started weaning because I was in remission.  At that point, I didn't even care about the kidney disease...I was more excited to stop the prednisone.  I can remember lying in bed at night, feeling like I was suffocating because of the fat around my throat.  None of my bras fit because my rib cage had gotten so big. I had a hump on my back (another side effect).  And I was psychotic...seriously, I think I was manic.  I'm amazed my husband stayed with me...I had so much rage, so much anger at how I looked...how I couldn't concentrate anymore...hell, I couldn't even have a normal conversation anymore....all this anger, and he was my target.  He definitely got a huge dose of the "for worse" part of our marriage vows.

It took hard work, and a LOT of pilates session...but I finally lost the weight. 

My whole goal through this thing was to get well enough to have a baby.  Joacim kept asking me how I was going to deal with getting big during pregnancy when I was having such a hard time during prednisone.  He failed to see how ridiculous that question was.

I didn't have too long to be "normal" again...because soon after I found out I was pregnant!  :)

Was I worried about getting fat?  Awww HELL no!  I reveled in being pregnant...from 11 weeks

all the way to 39 weeks, I felt beautiful.  And I was confident again

During my pregnancy, my protein continue to drop, getting to the lowest it's ever been.

I had a wonderful, beautiful, completely uneventful pregnancy.  No swelling issues, no high blood pressure, no nothing...just bliss.

And the day she was born was one of the happiest and amazing days of my life.

I love being a mom....and had waited so long!  I savored every moment with her.  Sadly, that joy was tainted early by the news that I had relapsed.  I was nursing Izzy, and there was no way in hell that I was going to stop that, so I pushed back and said I wouldn't start taking prednisone again until I was done.  That experience with her meant so much to me.  I had planned on doing it for a year, but after about 7 months my milk production just stopped.  Pretty soon after that I got my period again, which kind of explained it, but still, I was devastated...because I could no longer do this for Izzy, and because I had no more excuses for delaying the inevitable.  Here are a couple of pictures of Izzy at 7 months...damn she's CUTE!

I was really having a difficult time coming to terms with having to start taking prednisone again. I was terrified actually.  I had such issues with anger, and having a baby now scared me even more.  What if I couldn't control it?  What if I yelled at her all of the time?

This time, I decided to take control.  The first thing I did was write an email to all of my friends, family and co-workers.  I told them what was going on, what my disease was, that I was going to start taking prednisone, and what those side effects were.  And I gave people the permission to ask...I didn't want them to be all weird around me, or look at me strangely.

I also started taking Wellbutrin to help take the edge off of the anxiety that I was feeling.  And I started seeing a therapist.  I needed to talk through my feelings with someone who didn't know me...also so that  she could see the difference between me before and during prednisone...to help guide me back if I got all crazy again.

I wrote a blog post on my other blog that gives great insight into the anxiety I was feeling at the time.

This picture below was one of the last days I can remember where I felt normal.  This picture was taken a few days before I started prednisone again.

I started taking steroids on July 19th, 2009, almost exactly 3 years after the first time I took them.  This time, the experience started out differently.  It took awhile for the side effects to kick in.  This picture was taken on September 19th...a full 2 months after I had started.

I started getting excited...I thought that maybe I was going to get lucky this time and not experience those awful side effects.  I was wrong.  It was seriously like a light switch...one day off and the next day on...moon face, torso swelling, hair growth, buffalo hump.  It felt like it happened overnight.

Halloween 2009

But the prednisone didn't work this time.  It didn't do a damn thing.  And THAT pissed me off even more because of the hell I was going through, and it wasn't even working.  So I had another kidney biopsy, and this time it showed FSGS.  I wasn't devastated..I think I was in denial.  I just couldn't believe I wasn't going in to remission. From everything I had read about FSGS, I knew that I was already on a slippery slope because prednisone didn't work.  I was steroid resistant with FSGS.  This was not good.  The next drug of choice was cyclosporine...not as bad of side effects as prednisone, but some nasty ones nevertheless.  By January, this is what I looked like.  Once again, a shell of my former self.

And in March

The worst side effects of cyclosporine are EXTREME hairgrowth (hello, Teenwolf) and highly sensitive skin.  These two things sucked combined because I had so much hair growth that I had to get it waxed, but the sensitive skin made it HURT LIKE HELL.   Yes, folks...I got my face and neck waxed regularly...smooth as a baby's bottom.  God, that's embarrassing.  Oh yeah, and EXTREME EXHAUSTION.

I took cyclosporine for 6 months, but it didn't work either.  Dammit...this was not looking good.  I had 2 other choices (drug-wise) at this point, and it was either Prograf or Cellcept.  Because Prograf was a higher class of drug, and because cellcept had the side effect of gastro issues, I chose Prograf. 

After taking it for about 3 months, labs showed my protein had shot up to 10+ grams.  This freaked me about because I had NEVER been this high...never.  So, with my neph's blessing, I got a 2nd opinion at The Cleveland Clinic.

We made it a family affair and took a road trip.  This picture below is one Joacim took of me...when I see it, I can see how sad I am...how empty I feel.

That was an interesting visit.  I wasn't expecting a change in diagnosis...of course not.  But I got pretty excited because he was a world renowned nephrologist, and he seemed excited about me...kept saying that I was an excellent teaching case.  In my mind, this meant some increased focus.  I also thought that maybe, just maybe, he might have another treatment in mind...something new, or at least a clinical trial.  HA!  WAS I WRONG.  That doctor may be incredibly smart and well-known, but he had the bedside manner of a troll.  And it took 2 full months for him to return my call.  Needless to say, I won't be going back there for any help.

Sadly, around the same time, lab showed that Prograf didn't work either.  At this point, I needed a break.  I could've tried cellcept, but there wasn't much data supporting it, and at that point, I was tired of being a guinea pig.  I felt like we were just trying things for the sake of trying, and I was tired.  I wanted some normalcy.  I NEEDED it.  I wanted my body back.


At this point, I have a chronic kidney disease that was eventually going to require a transplant.  My protein was going up inexplicably (now at 16.5), no drugs work, and I probably can't have any more children (still in denial about that one).  It's just not good.


I do feel fortunate that I found a clinical trial (all on my own) and am actively participating it.  I hold no false notions that it'll cure me, but if it can help to bring my protein down, then that'll keep my kidneys going a bit longer.  I'm still crazy optimistic that I may be able to have another baby.  Izzy's happy, and so far not emotionally scarred by my illness.  It's still a huge fear..and I'm sad that she'll have to see me go through some crappy stuff.  I talk with her about it, and take her with me to doctor's appointments.  She helps me get my pills together every week. For her, this is normal..guess that's the best I can hope for.

Rant : FSGS Sucks

I love my kidney peeps!  Seriously...they keep me SANE...I think all of us have, at one point or another, run across that person that just doesn't get what you're going through...that makes some comment that almost trivializes your suffering.  Those people say things like, "It could be worse.", or "Be thankful for what you have."  You know what pisses me off about these people?  It's like they've telling me, "Stop yer bitchin'"...

And WHY in the world does bitching about something make me seem not grateful for something else?  Case in point...I, most likely, will not be able to have more children.  I say this out loud, but it still hasn't sunk in...not really sure if it ever will.  And there are some people that, when I mention this, come back with "Be grateful that you were able to have one child".  Ok.  STOP right there...first of all, I AM GRATEFUL...more than you or anyone will know.  I knew that there was a chance I'd only have one while I was pregnant, and boy did I ever savor that.  I don't think I complained much at all during pregnancy...I loved every part of it.  And I love every part of her (even the whining :)  But can I not mourn what may never be?  Does that make me somehow not grateful for the beautiful little girl I have?  Of COURSE it doesn't.  There's no logical connection between those two, yet people consistently reply with that.  Maybe there intentions are good...maybe they think that, by saying something like that, that it'll hurt less.  Hey, guess what.  It doesn't.  It just pisses me off.

And you know what?  I KNOW it could be worse, because it WILL be worse for me in the future..MUCH worse....kidney transplants, anti-rejection drugs, dialysis.  Woohoo! SO STOP TELLING ME THAT IT COULD BE WORSE.  Let me bitch, because sometimes, it's the ONLY thing that helps.

Ok, you may resume your normal daily activities.  This particular rant is over for now.

A tiny little victory : FSGS Sucks

So I was listening to my Manic Mommies podcast yesterday, and one of the ladies was talking about how she wasn't getting enough "me" time.  I've heard it before, but for some reason I took it more to heart today.

I used to go to hot vinyasa yoga every week...that is until, oh, around the time I started this blog.  I LOVE LOVE LOVE yoga, but haven't been back in a while because I was worried that I wouldn't be able to do the 2nd half of the practice;  it requires a lot of manipulation of your feet/ankles, and we all know how IMPOSSIBLE that is for me right now.  But today, I decided to say "Screw it".  I haven't slept well the past 2 nights, and I just had an anxious feeling about me all day.  I knew that the only way to change this course was to get some exercise.

And I'm SOOOO glad I went.  Granted, Amanda (my yoga instructor) took it easy on us since she's been on a 2 week hiatus herself :), but it felt so GOOD to get my body moving again.  Yes, I couldn't do everything, at least not the way I did before, but it all came back a lot easier than I had imagined.  My muscles were tight, for sure, but at the end things had loosened up nicely, and I was still able to easily get into a headstand (now if I could just stay in that position to let gravity take effect on my legs!  :)

It just felt like a tiny little victory for me today...a tiny little victory against my own laziness and FSGS.  I've become so complacent about how I am physically that I think I've given up putting any effort in to exercising again, but not today....today, I'm giving this disease the ol' middle finger :)