Thursday, October 4, 2012

Owie : FSGS Sucks

I've gained 10 pounds this week. And I have no appetite.


Thats all I have to say about that (for tonight, anyway) ;)

Wednesday, October 3, 2012

Feeling thick : FSGS Suks

Remember my comment about saying I feel thicker? Well, jumped on the scale tonight and it turns out that I've gained 10.2 pounds this week.

I don't really think there's much else I can say about that.


Tuesday, October 2, 2012

Something's up : FSGS Sucks

Something's up and I don't know what it is, but I know it's something.

People like me with a chronic disease (or any disease, probably) are incredibly in-tune with our bodies, and I  can tell that something's not right...I just wish I knew what it was.

My eyes are puffy.  My entire body feels as though bugs are crawling all over me.  The swelling in my legs is intense...much like it was at this time last year, and it doesn't go away with sleep anymore.  I feel like I need one of those inversion tables in order to have any effect, but then that'd probably make me pass out, which would also equally suck.  Even my pee is different.  And the swelling is not only in my legs, but moving up to my abdomen and my neck.  And I've lost my appetite.

I'm off the Acthar, and I'm getting thicker, and I have no idea why.

If you look any of these things up, put together, they're not so good.  I have an appointment at Mayo on the 15th of October, but I need to move it because I have a meeting for work that I can't miss, so no idea when I'm going to be able to get there.

So that's the physical side of things....the emotional side is worse.  I feel like I've given up a little...or I'm just (say it with me now) so tired of being so tired.  My new job (that I love) keeps me going 100% all of the time.  And when I'm not going 100%, I'm sitting in a car..a lot..watching the fluid pool around my ankles.  The other day, when I was flying home from Detroit, I almost missed my connection because I had pain in my shins that was SO bad I actually nearly stopped and started crying.  I physically couldn't walk any fast...forget running.  And it made me FEEL sick....it made me feel incapable of doing what I want, and it made me so fucking mad that I can't describe it.  I can't think.  I can't remember.  I almost showed up to a party a week early tonight...thankfully my neighbor gave me that look like "are you crazy"...maybe I am...maybe she's right and I've completely lost my marbles.

The physical limitations are growing, and I can't seem to stop them.  I can't rest enough.  I can't sleep enough.  I can't do anything.  I try to eat something good (or eat anything, for that matter) and mid-meal I'm so nauseous that I can't stomach another bite, yet I continue to gain weight.  My shoes aren't fitting again, and neither are my clothes.  I know it sounds as though I'm describing physical things again, and I guess I am, but imagine what it does to a person emotionally.  To know that you're being completely betrayed by your body that should, by all odds, be completely healthy.  I just had shitty odds.

I put my pilates machine upstairs so that I can at least start to use it to become more active again, as all of this "resting" is making me feel like Jabba the Hut.  I can at least start trying to become a bit more flexible...it's something at least.  But we need to move some stuff out of the way, and I can't move it myself.

And right now, at this exact moment, Izzy is screaming, "I WANT TO SNUGGLE WITH MY PAPPA".  You think that'd be cute, wouldn't you?  Now imagine that in a hateful, nasly voice, over and over and over again.  Not so cute now, is it?  I'm so tuned out right now to her...I feel awful.  I just don't have that mental kind of fight in me right now.  I'm fighting all sorts of my own demons, and believe me, I know how selfish that seems.  But how can I take care of her when I can't even take care of myself.  I'm trying to put on my air mask before hers, yet I feel like a complete and utter parenting failure.

I know I'm my own worst critic.  No one is expecting all of these things from me, except for my husband, which hurts because even after all of this time dealing with it, he just doesn't get it.  I feel like the way he looks at me is one of distaste.  Like he's frustrated with my "laziness"...

Fuck, I don't know what to do, and there isn't a single person in this world that can tell me.  Not that that's stopping me from asking.  A guy I work with has a brother that's a nephrologist here in town, and he did a wonderful thing by setting up a call with him.  The doctor was so very kind, and honest.  I told him that I'm interested in learning more about a medical nephrectomy, which is essentially killing off your kidneys by medicine.  I know, I know...sounds drastic doesn't it?  But that's how bad I feel.  I still can't understand why I'm trying to save things that make me feel so awful, and that's because the grass is always greener on the other side, isn't it?  That doctor gave me some things to think about, as well as some of my other kidney friends.  I don't know which way to go, or what to do, but it's time to explore all of my options, no matter how drastic they are.

Would I feel better on dialysis?  Maybe.  Would I be able to handle it, emotionally, if something went wrong and ultimately I was responsible.  There's something to be said for letting nature run its course, but I honestly can't imagine surviving kidney failure.  I don't want to wait until I'm not even mobile before I do something, but I also want to consider how my choices affect my life and that of my family.  What kind of a commitment is it?  How much support will  I need?  How will I take care of Izzy?

Soooo many things running through my head..  Luckily, I've got the NKF walk coming up where I hope to meet more people and talk about them.  The walk is October 13, so you still have plenty of time to donate.

Here's a link to my page:  http://donate.kidney.org/goto/jenntrunk

There's also the Nephcure Lunch and Learn in the Twin Cities on November 10th.  You can go here to register if you're interested as a patient, or just someone who wants to know more.  A light lunch is provided, and the event will go until about noon.

I've got lots of things to think about, and I actually could use some useful advice, if anyone has any.  Maybe a personal story about their experience, or any sites/links that you could send me to for info...anything would be GREATLY appreciated!  Thanks for reading :)



Transplant / Living Donor Info for me (edited)

I wish I would've had this post ready because I had so many people reach out to me after the last one that wanted to share my info.  I&#...