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!

Oh so not myself : FSGS Sucks

I wonder if I'd feel this way every morning if I didn't have this kidney disease.  Saturday night and last night I got crap for sleep.  Tossing and turning...every position was comfortable yet still I rolled around like a crocodile killing it's pray.  Saturday I blame the Nephcure walk...all of that standing around isn't easy on this ol' body. But last night?  I have no idea...I'd be lying there...awake...all night.

I wake up every morning to puffy eyes, which makes it hard to see sometimes.  I've got a killer headache this morning.  It seems like a lot of mornings are like this, so I'm just wondering what I would feel like in the morning if I didn't have FSGS.  Would I have more energy?  Because whether or not I sleep 7 hours or 12 hours...I'm still tired.  Would I get better rest?  I'm up at least once if not twice going to the bathroom...an evil side-effect of all of the diuretics.

How I would LOVE to wake up full of energy...normal eyes (and ankles) ready to face the day.  I feel as though my work is suffering as I can't maintain any sort of focus lately.  Some people are going to think it's because I'm a "short timer" here now...knowing I've only got a couple months left, but that's not it at all.  I just can't find the energy or the focus. 

I took Izzy swimming yesterday, thinking that SOME sort of physical activity would help me sleep, but not so much.  Tonight, if I feel better than I do right now, I'll try to work out more.  Maybe Jillian's 30-Day Shred DVD is in order.  Pray for me that I don't hyperventilate during it!  :)

Nephcure walk is tomorrow!!!

And I always get nervous about these.  I guess it's because I feel guilty that it's not "bigger".  I feel guilty because people are taking time out of their lives to come and walk with me.  I know I shouldn't feel guilty or even the slightest bit anxious, but I do.  I feel that if something goes wrong, it's all my fault because I didn't put enough time into it, but I honestly just didn't have as much time this year.

This is the last big thing on my plate for the rest of the year.  Our house is picked out, the Lilly Day of Service is done, no more photography sessions the rest of the year....now it's time for some rest.

I do have a little bit of concerning news, though.  I have a group on Facebook of women who have FSGS that either want to get pregnant or are pregnant.  Anyway, there are 25 of us, and at this time, there are 4 that are pregnant and 2 that just had babies.  Nope, let me correct that, there are 3 babies and 3 pregnancies, because one of the women just delivered her baby boy, Malakai today at 25 weeks.  He's 1 lb 2 oz, and that's about all I know right now.  I'm just praying for her and little Malakai that everything works out.  They've got a long and difficult road ahead of them, and it's going to be scary.

Another one of the women had her baby early too because little Lucy was showing signs of low birth weight.  And another woman that's pregnant posted that her blood pressure is high and she's worried about pre-eclampsia.  As if we don't all have enough to worry about with just the kidney disease, but these women are trying to complete their lives and grow their families too, and running in to some problems.  It just makes you wonder why it just can't be OK, you know?  I mean, seriously....why?????

It makes me think that, even if I could ever get  my protein down low enough (which is looking pretty unlikely) that I don't think I'd feel comfortable getting pregnant again.  It seems like there are too many unknowns...too many things that could go wrong and I don't have the best of luck.  The stakes are just too high for me.  It's a sad realization to come to, but I'm being 100% honest with myself right now.

And do you remember that little girl I talked about before that had the kidney transplant and the FSGS recurred within 12 hours?  Her name is Macy, and today the poor thing had an endoscopy and colonoscopy.  Now, for those of you that remember MY COLONOSCOPY, it was a pretty funny ordeal, but I'm an adult and the situation warranted some levity.  But Macy's 5.  It's not funny...it just plain sucks.  And because of the prep for the procedures, she's dehydrated and now in the hospital trying to get rehydrated.  It just doesn't seem fair, does it?  You know why?  Because it ISN'T fair.

But that's why we walk, right?  It's to raise money for people like my pregnant women friends, Macy and me...so that we don't have to suffer and so that we can live freely.

A day on my butt helps the swelling go down : FSGS Sucks

(sung to the tune of "A Spoon Full of Sugar"....Mary Poppins...get it?)

Anyway, I texted my boss last night asking him if I could work at home.  My legs have been swelling more and more, and I seriously needed a day to put them up and see if it helped.  It's freaking me out that the amount of diuretics I'm on isn't even making a dent in this.  How the hell would it be if I weren't taking any?  Holy hell....

My butt hurts, but my legs wobble, and wobbly legs are a blessing because that means there isn't as much water making them stiff.  I wonder how long it's going to take tomorrow for the swelling to return.

I've done a little research, and I'm thinking about hitting my doctor up for an albumin infusion.  It seems like this might provide me some relief, although temporary.  I told Joacim that if my doc would agree to it, then I'd PROMISE to restrict the salt.  I know that I should be doing this, but it's just so damn hard....SO damn hard.  And I guess, in the back of my head, I don't think it'll help, which is why I don't try hard enough.  It probably doesn't make a lot of sense, but that's how it is.

I also got word from my clinical trial coordinator.  There are 4 doctors meeting tomorrow to discuss me (don't I feel so special).  My guess is that I won't get to start back on the trial due to the fact that, even thought I don't have cancer (yippee :) I DO have mild dysplasia.  And putting me back on an immunosuppressant might not be the best idea.  I'm keeping my fingers crossed that I'm wrong, but hopefully I'll have an answer tomorrow.

But the best part of the day was when I checked my email this morning and I found a comment from a posting I did yesterday on this blog.  It was from a mom who's daughter has FSGS.  She wrote funny, witty things..and I imagine that if she and I would be fast friends.  She told me that it helped her daughter knowing that someone else..an adult...felt the same things that she was feeling, and that just made my day.  This blog is great for me because I can rant all I want and get it out, but when I help someone, it makes me feel INCREDIBLE!  I dearly wish I had someone like me writing about this early on so I knew that I wasn't alone.  I don't want anyone to feel alone with this disease.  It can be very isolating due to some of the side-effects of the meds.  It changes us..changes how we see things....changes out we see ourselves.

I struggle with this particular aspect of the disease more than anything else.  I am fully aware that I have issue with how I see myself.  It's unhealthy, and I'm aware of it.  It frustrates me to no end, and I'm trying to figure out ways to heal, but it's hard.  I don't know what "normal" is for me anymore.  Is it the person I was back in 2005 before I was even diagnosed?  Is it me right after I had Izzy but before I relapsed?  I have no idea, but hopefully it isn't the me I see in the mirror every day, cause I don't like her so much.  And I don't want Izzy growing up with body issues...good Lord I don't want that, so I need to get myself healthy first.