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.