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...

Pee pee peeeeee! : FSGS Sucks

Well, since this past Tuesday, I've lost 5 pounds.   And I FEEL the difference!  Did you know that there are bones in your feet and ankles????  :)  The reason I say this is because I haven't seen mine in...oh....8 months!!!

And I have an achilles tendon....seriously...I saw it today.  I'm not shitting you!  Granted, it might be gone tomorrow because I went a WEE bit overboard with tomato juice tonight when I got home, but it tasted soooooo goooooooood.

And tomorrow, I'll be here all day, peein' in my jug.  This time I was smart and got 2 of them.  I've been getting up at least 3 times per evening to use the facilities, so I figured I could easily fill one of those things up (and I think I actually did the last time, now that I recall). 

Anyway, I'm all prepared.  I ran all of the errands yesterday (I think) so tomorrow will be spent cleaning up magazines (as I've accumulated too many of them), doing laundry (boooooo), making pumpkin bread (yummmm) and carving our pumpkin.

And now I think I'm off to bed.  Night all!

Diuretic changeup : FSGS Sucks

I saw my neph today, and as expected, he shot down my albumin infusion idea.  His rational:  there's no data to support or even suggest that it works.  My rational:  why not try it anyway?  His response:  no.

Ok, so after a discussion about quality of life issues, and him still trying to justify our last interaction, I felt like I was able to make a little head way.

I NEED a break from this swelling....even if it's only temporary, I need it.  So we're essentially going to see how much we can push the diuretics.  There is a chance that my electrolytes could become whacko, and that's a pretty dangerous situation, but he also feels (rightly so) that I'm smart enough to get a drink of water when I'm thirsty (which I'm mostly likely to be even more so since I'm upping the dose) and to call if anything feels "off".  

So we've switched from Lasix (furosemide) to Demadex (torsemide), but kept the dosage the same at 20 mg / 2x day.  And we've also bumped up the metolazone from 2.5 mg / 2x day to 5 mg / 2x day.  We'll try this for a couple of weeks and see if there's any response. In the meantime, I'll get labs done weekly (starting Monday) to check on my sodium, potassium and magnesium levels to make sure everything's still in check.

I also started on a potassium supplement, and lemme tell ya...this pill is HUGE!  Holy hell, that's gonna be hard to swallow tomorrow morning, and it DEFINITELY won't fit into my little pill carrier/sorter thingy!  

I also asked him to write an order to do a 24-hr urine over the weekend.  Since I'm not participating in the drug-part of the clinical trial, I want to see if it worked, and a 24-hr for me will tell me that.  Keep your fingers crossed over the next few days that I don't dehydrate, pass out, or cramp up :)

A good nap : FSGS Sucks

Apparently a good nap is what it takes for me to feel better.

I left work yesterday around 10:00am.  I felt AWFUL.  For awhile there, things started to get dark, and my hearing was all screwed up.  When I got the sweats, I knew it was time to leave.

As soon as I got home, I got my jammies on and crawled straight in to bed and slept until around 2:00pm.  I slept less than I thought I would, but I felt pretty good when I woke up.

I woke up because I received a call from my clinical trial coordinator, Barbara.  They had a big pow-wow about me yesterday (due to my abnormal pap) and have decided that I won't take the Humira anymore, but that I can still be a part of the study (meaning they won't withdrawal me from it).  While I'm sad that I can't finish that part out, I agree with them in that my health is of primary importance. I'm thrilled to still be a part of it, that way I can stay in contact with these wonderful people.  AND Barbara has it all worked out to transfer my car to the doctor I wanted at Mayo clinic when I move, which is FANTASTIC!!!  I know that, because of this, I'll get the best care possible.

I have a doctor's appointment this afternoon with my neph. I'm going to ask him for a script for my increased metolazone dosage, and I want to talk to him about albumin infusions.  I've tried to do a little research, but the info I'm looking for isn't out there, which puts me at a disadvantage because I'm sure that my neph is going to say no.  I'm just thinking that, if I can bump up my albumin enough then this swelling will go away for a bit, and then it's like starting from a clean slate.  I can see what (if any) foods / activities trigger the swelling and work towards figuring out what works for me.  I know he'll say no, but I've got to try.  I'm also going to ask him to order a 24-hr urine to do this weekend so I can see where my albumin, creatinine and protein are at.  Wish me luck!