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.

WoooHooo! : FSGS Sucks

Ok, so I wouldn't normally expect to have much of ANYTHING positive to say here (after all, the whole point of this was a place for me to complain :), but I MUST share after yesterday's utterly crappy start.

I got a call from my OB/GYN, and my biopsy is CLEAN!  No sign of cancer....some mild dysplasia still, so I'll need to have another pap in 4 months, and probably have them a bit more frequently for the time being, but that's a tiny price to pay for a clean bill of health!  So woooooooooooohooooooooooooo!

I called the FONT 2 study coordinator, Barbara, yesterday to give her the good news because I've had to stop the trial since I found out about the abnormal pap.  I'm praying that I can start back up on the trial, as I've only missed 1 dose of the Humira so far, so keep your fingers crossed for me that I can.

The bottom : FSGS Sucks

So, if I thought yesterday was bad, then today truly sucks beyond all days.

Remember how I had training at 7:00am this morning???  Yeah, well that made me get up at 5:30am (NEVER a good thing for me).  I wasn't really stressed since I wasn't even awake yet, but I got in my car to leave at 6:30am, backed out and CRUNCH!.  I hit Joacim's car.

Oh yeah....mark this one up for sheer stupidity / lack of paying attention.  Joacim is always gone before I am, so when I backed out this morning, I never even thought about his car.  I saw the recycling bin at the end of the drive that I didn't want to hit (sadly, it would've been much cheaper to hit that damn bin than Joacim's money-sucking Volvo).

And I felt awful.  Thank God for the happy pills because I think I might have cried.  Of course, laughing hysterically puts some people on edge too, waiting for the other shoe to drop :)  After my training (which, someone I made it on time), I got on the phone with a collision repair center to see about estimates.  I was able to get in this morning and get those done on both cars (and can I say again how Joacim's car is a money-sucking Volvo?)  My Jeep needs a new bumper, his needs new paint and his is anywhere from 2-3 times more expensive than mine, depending on how much we want to fix.

I thought about paying for it out of pocket, but decided to stop by my insurance agent anyway since I needed to get a reprint of my insurance card for my Jeep, and it seems that it'll be cheaper to turn it in on insurance than pay for it ourselves.  Not sure what we'll do, but we'll do something.

Seriously.  This day / FSGS both suck equally.

I feel like I'm spiraling : FSGS Sucks

I saw on Nephspace or Inspire the other day asking who do you think you'd be if you didn't have FSGS.  When I first read it, I thought it was a ridiculous question...I mean, what does it matter?  But then today, I started to wonder.  Would things "feel" easier if I didn't have this?

I'm spriraling downward today, and here's why:

1.  I'm indescribably tired....sleepy even, which is a bit unusual for me.  I think I almost fell asleep typing at work this morning.
2.  I have training at work at 7:00am tomorrow, which means I will get even less sleep tonight.
3.  Izzy was in bed by 6:30pm which also means I'll get less sleep because she'll wake up screaming and come into our bed asking for water or whatever else.
4.  I'm gaining an uncomfortable amount of weight.
5.  I was going to work out today, but then our realtor called and wants to do a showing tomorrow.  Good news, you'd think, unless you saw how messy we let the place get.
6.  Didn't get to work out because of said mess in item #5 that we had to clean up.
7.  I feel fat.
8.  Izzy's been an emotional NIGHTMARE lately.  From the moment she opens her eyes in the morning, it's very vocal drama....and it's exhausting.
9.  I'm VERY swollen today...up to my knees.  I feel swollen around my ribs...it feels harder to breathe today.
10.  I've been fighting a cold since Thursday.  It's been fairly mild, so why do I walk around feeling like the other shoe's going to drop and I'm going to get REALLY sick?
11.  Sooooooo much work to do at work.
12.  I can't seem to get anyone at General Mills to look at my resume.
13.  Have I mentioned how fat I feel?  Seriously...I can't stand it.  It makes me sick to look at myself.  I hate it...I hate hate hate how I feel and look every single frickin' day.  And yoga tomorrow???  I won't be able to go because of this DAMN SHOWING scheduled right in the middle of it.
14.  Still nervously/anxiously awaiting my biopsy results from my LEEP last week.

I keep telling myself that it'll all get better soon, but will it?  That's the point I was trying to get to at the beginning.  All of this before would've been no big deal, but feeling like I do physically, it's so draining.  And there's nothing coming back in to fill me up....it just keeps getting taken and sucked outta me.  Take take take....I need someone/something to give give give.  And I'm also one of those people that can't enjoy good things until I get all of my tasks out of the way, and at the rate I'm going, my enjoyment will come right around NEVER.

Probed : FSGS Sucks

I had my colposcopy yesterday. It wasn't as bad as I imagined but it wasn't all that great either. Let's just say that it felt as though they could've driven a Mack truck through my hoo-ha. I don't think I was in stirrups that long when I had Izzy!

The morning didn't start out too well. My appointment was at 10:20am. I was back in the procedure room by 10:45am and then I sat.....and sat.....and sat.....until 11:30am. Now, anyone that knows me KNOWS that, at this point, I was PISSED. So I wrapped that damn paper sheet around my lower-half and stomped out into the hallway yelling, "Is ANYONE here????" Shortly thereafter I had my doctor and nurse in the room with me. The question I have is WHY does it take me getting irate and nasty in order to get anything done in a reasonable timely manner? I understand that doctor's are busy dealing with potential emergencies, but patients are busy too....patients don't allocate an entire day to spend at the doctor's office. The least the could've done was occassionally check in and let me know how much longer it was going to be...or heck, offer me some water or something.

After the doctor got there, I kinda let him have it over the wait, as well as the lack of a call. Let's face it..had I not called about getting the IUD, then I wouldn't have known about the abnormal pap until next year. That's just unacceptable, especially with someone like me that has a compromised immune system. What could be trivial in a "normal" person could become quite serious quickly for someone like me.

After I was done railing, and he apologized, we got on with the exam. He went ahead and did the colposcopy and LEEP at the same time so I didn't have to come back again to have it done, which I was thankful for. It'll take a couple of weeks to get the biopsy results back, so keep your fingers crossed for clean results. The best part of the exam was that he didn't see any abnormalities on my cervix...the bad part was that I had to get a shot in my HOO-HA! Yes, and it hurt as much as you would think it did.

Toodles for now!

Test came back : FSGS Sucks

I'm at home today because Izzy's sick, and that's sort of a blessing because I just got a call from my OB/GYN saying that the 2nd pap I had done last Tuesday also came back abnormal.

I'm freaking out.

Next steps..colposcopy next Tuesday morning.

Dear God/higher power....please let me be OK.

Clinical Trial visit : FSGS Sucks

I can't believe it's been a week already since my last clinical trial appointment!  It seriously feels like I just went there yesterday!  And once again, I was reminded why I like them all so much at Cincinnati Children's Hospital....it's because they're FANTASTIC!  Ok, I can't speak for every single person that works there, but I can easily say that for everyone I've met because of this clinical trial.

I love Barbara because she's:  nice, intelligent, reads my blog, can answer my questions, completely in charge, makes me feel appreciated for participating in the trial, gives Izzy prizes, etcl.

I love Dr. Goebel because:  he listens,  he explains things in a way that make so much sense (must be from usually working with children :), is my metolazone advocate :)

I love Christie because:  she remembered giving me my first injection, she makes me laugh, and I think we'd be best buds outside of the hospital.

Ok, back to the trial.  I brought my first morning urine, and got the requisite blood draws/vitals.  Barb then gave me the rest of my supplies that I'll need until my next appointment (meds, syringes, alcohol swabbies, pregnancy tests, etc.).  Joacim and Izzy came with me this time too, so we spent some time chatting about how awful Barb's evening before had been (flooded basement....I DO NOT ENVY :).

Dr. Goebel made his way in too.  He had a very busy day as there were two transplants happening that day, but he managed to squeeze me in.  He checked everything out, including my swollen ankles, and that's when I started pegging him with questions about metolazone and increasing my dosage.  You see, it's not working as well as it did when I was on vacation...I mean it's essentially not working at all.  I wanted to increase my dose, but considering the last visit I had with my neph, I was nervous about even asking before I had a chance to talk to Dr. Goebel about it.  Sadly, I'm wishing I was 18 again so he could be my doctor.  He's that great.  Anyway, he pulled up info about metolazone and explained the dosage I'm on and how it wasn't a big deal to double it, which still puts me well within the normal dosing. He also helped explain to me why I've been craving salt and water so much.  I seriously thought it was all in my head, but it's not.  it's all about the amount of water in my blood and my body's thirst mechanism.  It's registering that I'm thirsty because there's less water in my blood since it's leaking out, which makes my brain think I'm thirsty.  Here's a great article I found that helps to explain the edema and whatnot.   He also gave me some great tips to help out:


1.  Restrict my fluids - I can't remember the EXACT reason why, but I'm trying.
2.  Restrict my salt - RIDICULOUSLY difficult, but I'm working on it.
3.  Double my dose of metolazone, that way I'll have evidence if it works to go back to my neph with.
4.  Change lasix dosing - I usually take 40mg in the morning and 40 at bedtime, but lasix is actually a 6-hr drug, meaning there are several hours in the middle of the day where I'm not getting the most benefit, so he suggested I split my dose into 3 different doses to give me the most benefit.
5.  hot baths - again, gonna have to research the EXACT reason, but there was something about hormones and how they'll work when submerged in hot water.
6.  swimming - the pressure of the water helps to normalize the fluid retention in my body, plus the exercise is great for me.

Armed with this information, I feel better.  Sometimes that's all it takes...knowing that I might have a chance at changing some of the things that are making this disease unbearable for me.  I can't imagine having this level of swelling until my kidneys fail...that could be YEARS!  And Dr. Goebel said that that's why FSGS sucks...and I couldn't agree more.

I'm trying not to panic : FSGS Sucks

And this doesn't really have anything to do with FSGS  per se, but this is my outlet, so here goes.

I've been looking into getting an IUD since July.  My doc said that they like to do it within the first 3 days of my cycle.  I couldn't do it in August because I was on vacation, and I couldn't do it in September because we were in Minneapolis.  I started my cycle on Saturday, so I called my gynecologist first thing this morning to schedule it.  When I was on the phone with the scheduler, she asked me if I had gotten my last Pap results back, and I realized that I hadn't.  She said that she'd look them up and call me back. 

She did call back, but not with the results that I had expected....she told me that it was abnormal.   And I'm freaking out.  I've never had abnormal pap results.  NEVER.  She said that the doctor messed up and never got the results sent out, so she's glad I called.  Seriously???

Of course, the first place my mind goes is cancer....because apparently kidney disease and colitis aren't enough  And I start thinking about Izzy and Joacim.  And then I start to spiral.

My brain is working overtime on this.  I'm still getting the IUD tomorrow, and they're going to do another Pap test to see if it's changed since Friday.  I should have the results back by next Wednesday, so I'll be pacing the floors until then.

I talked to my dear dear friend, Emily, tonight, who is always a voice of calm and reason.  She talked me down from the ledge I was on,  I really don't know what I'd do without her...seriously.  She's coming down to Riley to take her son for an appointment with a specialist (pray that all goes well and normal), and then we're going to take our kids to the zoo to spend the day. 

I have so much to do at work, and we've got our big Lilly Day of Service on Thursday (which I'm a leading a team this year) so it's probably not a great time to take a day, but it's so necessary for my mental well-being.  Besides...I'd just sit there spacing out all day anyway.

Pooped : FSGS Sucks

No, this isn't a post about my colitis issues (although those are not so fun either) but I got so tired of writing the post title "Tired" that "Pooped" was something different.

I stayed home from work today because I have been UTTERLY EXHAUSTED the past couple of days.  I slept until noon this past Saturday (thank you, Joacim) but it just isn't enough to try to catch up on the weekends sometimes.  I slept until noon again today, and I'm STILL tired.  I think I could lie on the sofa the rest of the day, floating endlessly in and out of sleep.

Funny thing is that I think the need for sleep indicates something for me.  My voice has turned quite manly in my slumber, and my eyes are, once again, puffy and swollen.  Super.

And I was just telling Joacim the other day how good I've felt lately.  I had been feeling like I have a lot more sustained energy lately, but that's all gone today. I thought if maybe I did some yoga that it would trigger some energy...still waiting to see if I can summon up enough energy for a downward-dog...gotta be careful that my eyeballs don't pop out of my head!