Water retention and Whining (long)

Hey OHers!

I am going a little bit crazy right now. This morning I was up 8 flipping pounds from my lowest weight a few weeks ago! I KNOW that I have not eaten 28000 calories, let alone 28000 excess calories. I weigh, track, and measure meticulously, but this is still very frustrating. I feel terrible and bloated and awful! I can tell it's water for many reasons, including that I've been drinking tons of water as well as getting tons of IV fluids yet barely going to the bathroom! Literally I've had over 12 glasses of water so far today and barely urinated twice. So here's what's been going on...

A few weeks ago I got a second opinion from a different doctor about my ITP. His recommendation was to increase steroids and give it a few weeks to work because he thinks the doctor before him didn't treat me correctly. I have been on prednisone since September, varying doses of 40mg, 60mg, 80mg, and still managed to lose weight. Very difficult and slow going, but I was proud of myself for doing it. So new doc wants me on 100mg for a minimum of 3 weeks. A day or 2 after I started taking 100mg I saw my weight go up. I was frustrated, but knew it was water retention because I hadn't eaten off plan. Water retention (as well as weight gain) is a very common side effect of prednisone.

I took 100mg for 3 weeks, and my weight continued to tick up slowly. Last week doc finally admitted steroids weren't working, and weren't going to work, and I could start tapering off of them. Woohoo! In a few days of just being on a slightly smaller dose I shed 7 of 9 pounds I had gained...definitely water!

So this week I went in Tuesday for my infusion of Rituxan (new treatment we are trying) and my platelets were at 6k, which can be a bit dangerous. Unfortunately, my doctor is on vacation this week. The doctor covering for him wasn't comfortable with me going around with platelets so low, so she said I needed to start back on 100mg of prednisone because while it wasn't helping to boost my platelet count, she thinks it was helping to slow the destruction of platelets. On top of this, I've been in the hospital every day this week for infusions of platelets, and I've been given lots of IV fluids along with that. The covering doctor also prescribed me additional birth control pills because I've had a basically constant TOM since September and she thinks my body is trying to use platelets to stop that.

So cliff notes: high doses of steroids, plus new birth control medication, constant TOM, lots of IV fluids, and drinking tons of water, all equals MAJOR water retention weight gain!

I know this is something I just kind of have to wait out, and I think that when my doctor comes back from vacation he will probably allow me to start tapering off steroids again. Honestly it helped just to type this all out and look at all the information. Thanks to anyone for reading this, and if anyone has any strategies for dealing with water retention or anything like that please let me know!!

Well, I cant really complain about the 20lbs of water currently floating around in me - i chose this. I am sooo sorry you are still trying to figure out a solution. I wish I could give you a big HUGGG!!! 

Im thinking we should just throw the freaking scales out. They lie!! 

You deserve a serious award for your dedication and commitment through all of this - I only wish I had half the strength you had! Just know that this will eventually resolve. I know it doesnt make it better now, but hang in there. Love ya girl!

Ohh I totally wish I could get a big hug right now! That's exactly what I need, lol *sending virtual hugs*

It's hard for me to think of myself as a strong person sometimes, maybe it's because I feel like all I want to do is go home, go to bed, and not get out of bed, lol. I don't really have a choice though, life continues *sigh*

Thanks, Allison! :)

P.S. I'm looking forward to seeing SSB pics!!

Im slowly getting there. Im really nervous about posting naked pics. I at least set up a password protected album this morning so im getting closer. 

Ohh I'm especially excited for boobie results!

I'm getting ready to tuck mine into my socks, haha!

Did you get my PM? 

Just now, gotcha back :)

I'll be on the road for the next couple hours, if I don't answer that's why :)

P.S. totally hott! With 2 t's haha :)

Elise you are nothing short of amazing.  I loved you from the beginning when I saw you on here.  You are a very strong beautiful young gal who will get thru this.  I am also here if you need me.  I love to give and receive hugs.  I could do that all day!!!

Here's a BIG HUG from me to you!!!!

Hang in there; you will get thru this.  Love ya lots & lots my gurl!!!

Group hug!!!