There is no rhyme or reason : FSGS Sucks

I feel like all I ever do on this blog is bitch and complain...but hey, it's my blog and that's EXACTLY why I started it, right?

But...WOOOOHOOOOO...I'm not complaining today!  And do you know WHY???  Well, it's because I didn't remember how beeee-utiful my feet were, but now I do, and do you know WHY????  Well, it's because, inexplicably, I have no swelling.

This just proves to me that my diet has little impact on the swelling.  I have eaten like complete shit lately...it's not as easy when my husband is away, and he's been traveling for the past 2 weeks (just got home on Saturday)...  Now, I realize that if I were to suck on salt cubes, then that would probably cause some problems, but hey...eating like shit is apparently good for my swelling

 Yes, last week = tree trunks.  Today = skinny minny

I even got to wear my new Ugg boots that I've been coveting in my closet since September....

Oh yes, my friends...I'm bringin' sexy back.  Oh no..wait...no I'm not...I've got colitis too, and it's making it's presence known lately.  I guess I can't ever everything :)

And OMG...has anyone else's skin been itching lately????  The last 3 nights have been absolutely hellish for me...I'm scratching all night...so much until it bleeds (yuck, right?).  I had this when I was a little kid too, and eventually was diagnosed with eczema.  I don't have the kind that causes visible rashes or changes in the skin...it's silent, but debilitating.  And THE ONLY way to make it go away is an ice pack to numb the pain and something stiff to drink to sleep through it.  Tonight I had a soak in an oatmeal bath...keep your fingers crossed that I don't want to rip my legs off and beat myself over the head with them....mkay???

FSGS Sucks...it just does

Izzy and I headed to Cincinatti on Tuesday for what I thought would be my last in-person appointment from the clinical trial.  Luckily, I get one more visit with these amazing people!!!

It was a good visit...did some psychological surveys, turned in the rest of my drugs that I couldn't take due to stopping the Humira, and just talked.  Barbara is A-MAZING with Izzy...she had her eating out of her hands within minutes.  And I LOVE that these people talk to me...to see how I'm doing both physically and emotionally.  I truly, truly believe that they care, and I can't tell you want a difference that makes.  THEY care about my quality of life.  As soon as I start talking about my leg swelling, Dr. Goebel hops on the computer to see how high I can go on my diuretic dosages.  Mind you, he's not the one that prescribes these, but he gives me information to take back to my nephrologist to help me.

The swelling is getting old.  I'm tired of talking about it.  I'm sure you're tired of hearing about it.  I think at some point pretty soon I'm going to have to come to the realization that this is not going away...no more drugs or anything is going to "fix" it.

Dr. Goebel commented again on how well adjusted I am, considering how ugly this disease is.  I thanked him, because, for starters, everyone wants to be acknowledged for being normal :)  And secondly, it gives me the motivation to keep going.  This doctor has seen the worst, and he knows the struggles that we go through, so that makes the meaning much more.

I'm embarrassed to say this, but here goes, because I'm wondering if anyone else has felt this way.  Ok, so I've got this shit disease that's getting progressively worse.  I've exhausted drug therapies, tried a clinical trial, spend 100% of my time swollen and achy...that all sucks.  But I know people out there who have it SO much worse than me.  However, I often wish that these things would just get it over with and fail.  My neph's main goal is to keep my kidneys as long as possible, and I'm thinking, "Why the hell would I want to do that???"  I mean, this is no picnic, people.  I put on a happy face, I bitch and moan and get it all out, but I still suffer.  Daily.  The extra water weight I carry around sometimes becomes unbearable.  I feel sluggish, wiped out.  I'm frustrated that I can't wear the clothes/shoes that I want to.  I'm angry because I'm too tired to work out, which leave me little outlet for stress.  And, let's face it, these buggers aren't going to get better.   I often wish they would fail and I could just get a new kidney.  There.  I said it out loud.  I feel better.  I don't care if it's rational...I don't care what anyone else thinks.  It's honestly what I think.

I think Dr. Goebel gets that.  He sees the changes in kids after transplants, so he knows the possibilities.  Now, I'm not going to do anything ca-razy...no worries there.  I'm not an idiot.  Let's just get this over with.

Judging by my lab results that I received this evening, maybe my kidneys are listening.  I compared my numbers with those from 6 months ago, and everything is moving in the WRONG direction (well, wrong if I want these kidneys to get better...guess I should clarify after my confession).


                                             May '11 Dec '11 Units            Ranges
BUN                                         16              23  mg/dL            6-19
Albumin                                     1.9             1.7             g/dL            3.8-5.2
Blood Creatinine                        0.7             0.9            mg/dL           0.4-1.1
RBC                                         4.02             3             mill/mol          4.2-5.4
Hemoglobin                               12.1            9.1            g/dL              12-16
Hematocrit                                35.6             28              %                37-47
LDH                                         250             312            U/L            118-273
Urine Creatinine                        56.8                            mg/dL
Total Protein (random)             274.6                           mg/dL             0-12
Protein/Creatinine Ratio             4.8                             mg/mg           0.0-0.1
Creatine Kinase (CpK)                                599           U/L             30-223

Now, I know that these numbers don't mean much to most people, so I'm gonna try to explain it as easy and as simply as I can.

BUN - measures nitrogen (urea) in the blood.  Urea is a by-product of metabolism of proteins in the liver, and the kidneys should remove it.  An increasing BUN means that my kidneys are not able to remove it as well, indicating decreasing kidney function.
Albumin - essentially, the reason I'm swollen.  The vessels in my body can't hold the water in, so it leaks out into my interstitial cavities (hence, the ridiculous edema).  Lower albumin means more swelling.
Blood creatinine - measurement of waste products in my blood
RBC/hemoglobin/hematocrit - all related to red blood cells in the blood, indicating that I'm anemic now
LDH - measure to check for tissue damage
Creatinine/urine numbers - harder to explain, but you can see from the ranges that I'm WAYYYY out of 'em
CpK - another tissue damage indicator....another HIGH OUT OF RANGE number.

This all sucks. I don't know what it all means, and I probably won't have any clearer answers when I show my neph.  He'll blow it off and be vague, and say something like, "Yeah, they're getting worse". Which will be TOTALLY not helpful to me.  Piss on it for tonight...I'm going to bed.

Please listen : FSGS Sucks

I had my last training session for NKF mentoring tonight, and one of the trainers read part of this poem.  I looked up the rest on Google because this poem captures what I've felt so often when dealing with FSGS.  Please take the time to read, and share.  I don't know the author, and apparently neither does Google, but if anyone finds out, let me know and I'll credit the author :)

Please Listen

When I ask you to listen to me
and you start giving me advice,
you have not done what I asked.
When I ask you to listen to me
and you begin to tell me why
I shouldn't feel that way,
you are trampling on my feelings.
When I ask you to listen to me
and you feel you have to do something
to solve my problem,
you have failed me,
strange as that may seem.
Listen! All I ask is that you listen.
Don't talk or do - just hear me.
Advice is cheap; 20 cents will get
you both Dear Abby and Billy Graham
in the same newspaper.
And I can do for myself; I am not helpless.
Maybe discouraged and faltering,
but not helpless.
When you do something for me that I can
and need to do for myself,
you contribute to my fear and
inadequacy.
But when you accept as a simple fact
that I feel what I feel,
no matter how irrational,
then I can stop trying to convince
you and get about this business
of understanding what's behind
this irrational feeling.
And when that's clear, the answers are
obvious and I don't need advice.
Irrational feelings make sense when
we understand what's behind them.
Perhaps that's why prayer works, sometimes,
for some people - because God is mute,
and he doesn't give advice or try
to fix things.
God just listens and lets you work
it out for yourself.
So please listen, and just hear me.
And if you want to talk, wait a minute
for your turn - and I will listen to you.

NKF Mentoring : FSGS Sucks

I've recently volunteered to be a peer mentor with the National Kidney Foundation (NKF).  You can go here to read more about the program.  Anyway, I've had phone training for the last 2 nights, and it's been very interesting.  The stories of the other volunteers blow me away...seriously, these people have been through A LOT, so it's awesome that they're so positive and willing to help people through this.

I guess that's kind of why I volunteered.  When I was FIRST diagnosed with MCD and took prednisone, I was a wreck.  I mean a complete and utter mess in my head.  What a difference it would've made had I had someone to talk to about it.  How do I know?  Because THIS time around (and now that my diagnosis has changed and become more severe) I've reached out, and created this AMAZING network of kidney peeps.  Sadly, not everyone is as "internet savvy" as I might be, or they just don't have the amount of time.  Maybe they're sicker than I am, or are REALLY struggling..that's what will make this program great...knowing that people have people to talk to...for validation of their feelings, for justification of their feelings...for a shoulder to cry on or an ear to yell into.  Whatever it takes, I'll be there.

Delinquent. : FSGS Sucks

I've been a bit delinquent lately...about my diet, about being a mentor on Nephspace...about blogging.  There's just SO much going on right now that I feel like, sometimes, I'm just fighting to make it through the day so I can go back to bed.

Joacim is traveling for the next 2 weeks, which means it's not going to get too much easier.  I totally overdid it this weekend, trying to cram 2 weeks worth of projects into 2 days, but it's DONE!  WOOOOOHOOOO!  I'd like to say, "Now I can relax", but anyone that knows me KNOWS that I'm only fooling myself :)

We still have no offers on the house, and I asked our realtor to not schedule any showings while he's gone.  We should be getting our buyout offer this week, so keep your fingers crossed for us that it's decent!  We're still trying to figure out when the heck we're actually physically moving (still not sure), but I DO think that I've solidified my plans for starting my new job, so that's one thing off the list.  I don't think any progress has been made on our new house, which is scaring the bejezus outta me.  Nothing, and I mean NOTHING, in this whole process has been easy.

The swelling is back...it's just a part of life now.  I'm just guessing that I become tolerant to diuretics very fast, and that there isn't anything (medically) that can help me anymore.  I'm back on track with watching my salt, and I'm getting ready to order some thigh-high support stockings (hmmm..wonder if they come in fishnets?  No?  well they should! ;)

My life is awesome.

Glad when it's done : FSGS Sucks

I'll be sooo glad when this whole house selling crap is over with. I MISS my elliptical, and my thighs are taking the brunt of it.

I had to go dress shopping on Tuesday for a funeral. wow. I haven't quite felt that crappy about my physical appearance in awhile. The flattering glow of fluorescent lighting, the cankles from it being the end of the day, the weirdness of my legs due to the pressure from my boots redistributing all that water. It's awesome.

Most of the water weight has come back, but not quite all. It seems to have nestled itself snugly in my gut, which is freaking awesome when you're shopping for clothes. I used to LOVE shopping....now it just depresses me.

I did find a dress, but I'm gonna have to deal with being uncomfortable all day due to the Spanx I'll be wearing to smooth out my gut. Loving life lately.

That's not what I mean...I do love my life, at least parts of it. And I AM thankful that I'm not any worse off than I am...I'm thankful for THAT everyday. But that doesn't mean I'm not going to bitch and moan about the things I hate. Nope. Not a chance. I feed off of the bitterness :)

I'm jinxed : FSGS sucks

Today was another day of EXTREME sleepiness.  I slept well...just not enough.  It's seriously unrealistic to think that I'll ever get 10 hours of sleep a day, but that's about what I need at this point to feel "rested".

This weekend was spent constantly on the go.  Early Saturday morning, my Grandma's husband passed away.  It wasn't unexpected, but that doesn't make it any easier.  I went into more of the details on my other blog, so I won't indulge here...needless to say I didn't get much rest this weekend.

And today, I was email my friend, Sarah, telling her that my swelling was good and under control.  Well, it's not anymore.  I felt my ankles getting tighter as the day wore on, and by the time I got home, it was back to the old swelling.  My feet still look pretty good, so I'm hoping I can salvage it.  I had been trying to wean myself off of the metolazone, but that's clearly a stupid idea at this point.  I freaking HATE HATE HATE HATE HATE how tight everything feels right now.  Hell, even my belly started swelling again.  Now, it's hard to tell if that's from the water weight gain again OR the colitis, which appears to be rearing it's ugly head again.  All of this, combined with the never-ending period (after the LEEP) and I am a BALL OF FRIGGIN' LAUGHS.

I had an appointment with my dietician on Friday to go over some of my questions about diet and nutritional needs.  I also wanted to talk to her about going vegetarian and how I could supplement my protein needs, and we came up with some good ideas.  The biggest focus for me right now is the low salt.  I'm supposed to be striving for between 1500-2000mg.  That doesn't sound hard, but it's SOOOOOOO hard for me.  I love...love....LOVE salt.  But I'm serious about this...I can't take this water weight, and if this works, it'll be worth it.  So I made a low-sodium soup tonight that I can eat off of the rest of the day, made some oatmeal this morning (salt-free), and cut up a bunch of veggies and stuff for sandwiches later in the week.  I found no-salt peanut butter, and low-sodium broth (ok, extremely low-sodium...around 140mg per serving, and the normal amount is 490mg...granted, it tastes like flavored water, but my taste buds will eventually get used to it).

I'm PRAYING that I wake up tomorrow and the skin on my legs is loose again....keep your fingers crossed for me!

Stayed home : FSGS sucks

I woke up this morning and was so, soooo, sooooooo tired.  I have been sleeping like absolute shit.  Last Monday, I was the kind of tired that felt like a hangover, so I came home and slept.  I'm thinking that the sleeping is awful because of the diuretics.  I take them twice a day, and the 2nd set of pills I take right before bed.  For some reason, it seems like they work REALLY well at night, and I spent the first couple of hours going to the bathroom, which means I don't get much sleep.  And then I start to panic because I know I'm not getting enough sleep.  Which leads to even less sleep.  Eventually, it adds up and I need a break.  It was cloudy, dark and rainy...in other words, a perfect day for a looooonnnnnng nap.  And so I did.

And didn't wake up until 3:30pm.

I slept through 3 phone calls (with the phone RIGHT by my ear).  Holy hell....I was tired.  Am I rested?  Hardly.  But I think I can function a little better now.

Sadly, this little nap has postponed my lab results by another day. I turned them in on Monday, and then called my doc on Wednesday to get the results, but THEY still hadn't received them yet.  So I called the lab where I got the blood draw done, but she was already gone for the day.  That was Wednesday.  I'm PRAYING that, when I call tomorrow, I'll have the results, but I've had a lot of problems with labs lately, so I won't hold my breath.

2nd Annual Indy Nephcure Walk - Garfield Park : FSGS Sucks

What the hell is wrong with me???? I just realized that I never posted these photos from the NephCure walk we had on October 22. My mind is slipping (or I'm just tired...distracted...over-extended....)

It was a CHILLY morning....get the goose bumps just thinking about it!  Many thanks to Joselyn Nephcure for all of her help.  She was able to solicit volunteers from Butler University.  She MUST be persuasive because these ladies came to help over Homecoming Weekend!  We were able to get them back in time for their own festivities, but we really appreciated their help registering walkers.

Joselyn also had a Zumba instructor volunteer her time to help us all warm up. Now me? I had a bad experience with Zumba and would like to be able to walk the next day, so I bailed out and took photos of everyone else instead ;)

This is Addy from "Team Sophie" helping to cut the ribbon to start the walk...thanks Addy!

This is Sophie of Team Sophie.  She's 21 months old, and was diagnosed in April of this year.  She's adorable.  Seriously.  She's the cutest!  And I kinda think we're buds now:)

This is Leanne's granddaughter, Jasmine.  Leanne and I spearheaded last year's inaugural campaign, so it was great to see her and her family again.

Sophie's sisters, Rilee and Addy

This is a photo of either those of us with Nephrotic Syndrome or FSGS, or their stand-in.  Sophie wasn't quite my bud yet so she wouldn't let me hold her, but she warmed up eventually.  (From L-R:  Angel's mom, Leanne, Sophie and her mom, me and Wyatt).

And my little one, Izzy :)

When we got back, the kids had some fun painting pumpkins that Leanne brought.  It was a GREAT idea, and the pumpkins turned out great!  Just wish it would'be been warmer so that the paint would've dried better :)

And coffee-creamer jug bowling.  Leanne and her family have a big party every Halloween, so she brought lots of fun things for the kids to do.  These activities and having the playground right nearby made it perfect!

That's the true color of her eyes....no editing here...

Sophie decided to paint her lips instead of the pumpkin

And we're finally friends.  Sophie is an incredibly happy little girl, especially considering that she's on chemo for her disease.

And this is the group.  I wasn't able to get a photo with EVERYONE from the walk because some people had to leave (and I just couldn't get my crap together to get the photo taken..), but we had a really big turnout this year.  I was VERY happy!!!

And here's Leanne and I...best buds :)

We had a really great time this year, and it's so rewarding to see the group grow...that means we're reaching people and getting the word out.  I'm going to miss this group next year, but hopefully the group in Minnesota is as great as this one.  Thanks all!

It's so unfair : FSGS Sucks

I started a group on Facebook some time ago for women with FSGS that either are or want to be pregnant.  I started it because I wanted to hear other women's stories about being pregnant with this disease, because when I had Izzy, I had only been diagnosed with MCD.  I had a fantastic pregnancy and a healthy little girl.

Sadly for me, my doctor has advised against having another one.  I can't get in to remission no matter what drugs we try.  I was in pretty deep denial at that time...I was only spilling 5 grams of protein (funny, right...ONLY 5 grams) but I felt that I knew my body and I just "knew" that everything was going to be ok, so I started the group.  It was pretty small, but we have 25 WONDERFUL women in the group now.  We've had great discussions...great advice...it's been a wonderful way to get to know these ladies, as we all share this disease.

But sadly, we had some bad news this past week.  One of our members was 25 weeks pregnant with her baby, and had to deliver due to some complications.  Even though the baby fought hard, it was just too early, and passed late last week.  This is the 3rd loss for this woman and her husband, and I'm finding it hard to think of ways to comfort her.

I have no idea what to say.  I can't imagine.  I know the pain I feel thinking that I can't have anymore, and it's heavy, but what she's feeling????  I have no idea.

And it makes me so mad.  She'll never know what happened or why, and she'll always be wondering.  She got to hear him cry...she said it sounded so sweet.  It's just crushing.  I've never met her..none of us have, but she couldn't find a better support group than the 24 of us that are waiting to hold her up if she needs it.  This disease takes so much away, but I hope, for her, that it's given her another place to find support.  Sadly, many of the women in the group have lost children, so there's experience. 

I guess that's the thing I'm glad about with this disease.  I've said it before, but I've met great people along the journey this time around.  We share something that only we understand, and we're all there to help pick each other up when one of us is down.  I love my kidney peeps.

Happy Feet! : FSGS Sucks

Seriously...check out how sexy these are!  No really...aren't they the most amazing feet you've ever seen.  You know, I always thought my feet were perfect, and here's finally a reminder of what they look like.  :)  Okay, enough kidding aside (not really :) I'm sooo happy that my feet look like this.  I've dropped 6 pounds since last week, so I think I'm going to try to start weaning off a bit on the metolazone.  I wanna be able to go back to it when I need it again, and I fear it won't work if I stay at this dose for much longer.

 It wasn't all that long ago that they looked like this

 

I WILL take a picture of my achilles tendon to remember what THAT looks like.  And I might even try to cram these gams in some great boots that I bought :)

And on Saturday, I was FINALLY able to get rid of some old medicine that I've been hanging on to because I don't want to just dump it in the trash.  I happened to see a notice in the paper about medication drop-off, and I totally took advantage of it.  Can you believe this is all "old" medicine...that's a lot of money sitting there...