Steroids: I'm guna pump you up!

Sadly the only thing that has been pumped up is my face. I keep waiting for the day when my face goes back to looking like I only have 1 chin and not 3.

Here's my pretty pre-steroid face

And here's me today 5 months later feeling bloated and disgusting 

People find it strange that I still take photos during the times I feel my worst but I like to just document everything for the ride. I want to be able to look back and see how far I've come. I know that eventually my face will go back to looking "normal" and hopefully by that time I will be completely off steroids and not have to use them again. 

Everyone told me when this first happened that I should avoid steroids. Even my doctor said they were the last cause of action because she didn't like using them. After my first IVIG triumph and then complete downward spiral I was put on them basically to make my body stronger to help the IVIG work it's magic. At that point I was just wanting to be able to stand up on my own so if steroids was what I needed then that's what I was going to do. 

What no one told me about steroids was that I was going to basically hate my stomach or rather my stomach was going to hate me for the duration of our trip together. 

It started off basically with bad heartburn. Everything I ate no matter what it was gave me heartburn especially Swedish fish for some unknown reason. 

From there it changed from heartburn to basically sour stomach all the time. You know the kind you have with a bad hang over that only an ice cold water can calm it down. 

Then it progressed again to full on roid rage brewing in my stomach and causing a lot of issues that went along with it. Let's just say medicated pads are the only thing making me not want to jump out of my seat. (Although if I did it would be quite the site to see since I haven't jumped in a long time) 

June we started off with an incredibly high does of 80mg a day. July we knocked it back to 60mg daily and added in Imuran.

August we started the weening process 60mg/55mg and currently I'm at 60mg/25mg. It seems the bigger the difference in the numbers the more off I feel. 

Lucky for me steroids also cause insomnia. I already spent many sleepless nights just laying there staring at the wall. I'm not sure if it was nerves about my treatment, grief over my diagnosis or what caused it to begin with but the prednisone didn't help one bit. I would watch complete series of showtime shows in my spare time and then get a few hours sleep and go to treatment. 

Lately I haven't had too much trouble in the sleep department perhaps it's because I'm sick so my body is exhausted or maybe I am finally starting to try and not worry so much about things. 

Life doesn't have a set path, we all may think it does but sometimes something so strange happens and things change. 

In the blink of an eye my life completely transformed. 

I honestly just cannot wait for the day that I can get out of bed and walk to the restroom without putting shoes on (thank god for crocs) and without the thought in the back of my mind that I'm going to fall. 

I miss all the normal things I used to be able to do with my friends and bf. I am not used to having to depend on people so much to accomplish daily tasks. Being such an independent person and then having to be so dependent on everyone.

I honestly don't know what I would do without Andrew and my parents & Jeff too! I know this has been hard on all of us but just know not a day goes by that I'm not so grateful for all your help. 

One of these days I will push through all this and we can enjoy our time together again (I still enjoy it now but you know what I mean) 

Anyone that's helped me with doors, bathroom breaks, loaded all my stuff into your car, wheeled me around, helped pick me up off the floor, opened my soda, basically anytime you have helped me with anything I genuinely thank you!

I keep saying it takes a village and I know with all your help I will eventually get to a point where I can be more Independent. 

Never in a million years did I think 32 would be such a tough year for me but in a way I am grateful I am so young as I don't know if as an older person I could handle this. 

But I finally get to say I'm one in a million and mean it ;)