Infusion Day

This week was the IDF National conference, my first year of not going after attending the last 4 years. It's a strange feeling because I'm not seeing old faces however I've notice that this year I was missing a lot of old faces because I wasn't attending an book con that I fell I love with last year. But I will see some at a new book convention that is taken place in St.Louis in July.

It's been 8 years since I've been to St.Louis so this upcoming trip I have in July for that new book convention that I've never been to will be bittersweet seeing the arch once again. 

So one of the main reason why I didn't go to IDF this year was because it was my infusion week, I still do IVIG at my local hospital. So there was no way to move things around, but I did do an infusion selfie and I went on posting it on the common variable group page as well two other groups that are readers/writers. 

It's no secret that my life is unique, being a zebra is unique. So when I shared n my two writer/readers group page they were moved. They were moved that I share something so personal, the reality is that being a zebra isn't personal it's my life. It's a side of me that I show whenever the opportunity occurs, I get told this all the time I have a bubbly, sassy and fun personality. So that what's makes me personable, I may not wear zebra ears or have many items of clothing that represent zebra but it's no secret.

People would call me brave

The Definition of the word B-R-A-V-E;  ready to face and endure danger or pain; showing courage.


maybe the word Brave isn't the right term to describe myself as a Zebra, because I've dealt with this all my life, I didn't have a choice in this lifestyle. This is my lifestyle and I've accepted this lifestyle a long time ago.

I was told as a kid when this all started was to be brave and while the fear was there and the pain, that bravery have subsided into acceptances and being my own advocate.

If you're just starting out, the adjustment struggle will be there. Don't just expect that maybe you won't have a hard time adjusting that it will be smooth sailing. You will have some hard adjustment, whenther its getting your IG products, finding the right doctors, meeting the doctors, learning everything about what it means to be a Zebra.

You must accept it at your own pace and learn about it at your own pace. That what I did when I first started in '99. Can I say when I finally accept this lifestyle? NO because it became a regular routine for me and it will for you.

I wish I could give advice to those that are in relationships and your spouse is having a hard time adjusting to this new you. But I can only give in what I believe and expects, not from experiences.

Infusion Day

Okay so this is a week late since I had my infusion last friday but I had a big big weekend so I didn't have the time to sit down and type away!

So my infusion went a little bit different because I had a nurse who seen me before and sometimes changes the bottle every once in awhile if my primary nurse isn't around. Well she was my primary nurse and I know she's knows what the routine is for me but she or I was going to play hardball.

First it had to deal with my needle size really its the same dance over and over again, I typically "Usually" uses an 1 and 1/4 size needle that practically the biggest size they make.

BUT . . .




. . . .




BUT . . .

The claim is that they don't have that size!!!!! Which I know is not true because Ive made it a habit to check the needle size when I come every 21 days. There's only a few nurses that actually know where that neddle is stocked but still it's the same old dance.

Anyways so I said we can do 1 inch  but I can't go any smaller than that.

So I'm access and waiting for my stuff to come up the nurse wanted to give me an IV saline bag which is like NOT WHAT I DO! Not in the last 6 to 10 years!

But she was insisted that it was protocol but I know the routine for me so after she was trying to provide an argumentative discussion about it's a backup, we can't just give you your medicine and such but I told her that we don't do IV Saline for me, we never have unless we needed to and I've been doing pretty good on Privgen without an reaction.

I kept telling her that no one else give me that IV saline but she goes on saying that everyone's problem but I had to put my foot down because I did not need that excess fluid running in me!

SO after I told her that I simply don't get it, she asked  

"So you're refusing this?" 

NEVER IN MY LIFE had I had someone say that to me! It was like I was refusing treatment but which I was not. But I said YES I'm refusing the Saline bag and so she gave me Saline Flush (Syringe) which is what everyone else does, simple as that.

Its rare that I had to do that but I did not need that medium size IV Saline bag, it wasn't even the smallest they had!  The only other time that I had to explain that I don't get an IV bag saline was with a new nurse (really new) and she asks for a switch

I promise I don't BIT! Or Claws but she was very new so she was uncomfortable with how things were run with me and me being so vocal.

And that's okay . . . with me it's just a go with the flow.

Infusion Day

This will be my first infusion blog that I have done in a long time, I  had used to write Infusion blogs on an old blogging site but I wanted to part from that. So now with the Zebra Divas I thought why not post an Infusion Day post.

To start off, I don't do home Infusion . . . WHY? you might asked is mostly because my home setting isn't suitable for sterile field too much clutter.

Another reason why I don't want to do home infusion is because I would miss my 2nd family that I have at Scared Heart, I'm like their 2nd/3rd/4th daughter to them. But also it's my comfort zone BIG TIME.I know at some point I might leave that comfort because of life changes.

So you might wonder what I do (AT) the hospital while I infused . . . A Computer, Ipad, Iphone

Typically I write (I'm a writer can't you tell?), it doesn't matter which book I'm working on I just know that I have to write or WANT to write.

Every once in awhile I will watch TV mostly for Cupcakes War (if its on) or Say yes to the Dress shows and sometimes whatever TNT is playing. 

I listen to music on a very regular basis, I'm almost never anywhere or doing anything without music playing. Then I get a visit from the spiritual people, we talk and then we say or well he says a little prayer for my life journey because I'm always doing something new that is towards my life journey down the road. 

Well that's pretty much what's goes on during my infusions, I'll share a old story of how I used to spend my time while doing my infusions so long ago.

~Kat