My New Dragonfly Friend (aka: port Huber)

I got a new accessory! No, it's not a purse, or shoes, or jewelry... It's an accessed Power Port with a Huber needle. 

Ok. If you're not a dysahtonimiac,  gastroparesis chick, or some other spoonie you probably have no idea wtf I'm talking about. Here's a quick synopsis:

Wikipedia's page on it says: 

"In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick".

Ports are used mostly to treat hematology and oncology patients, but recently ports have been adapted also for hemodialysis patients.

The port is usually inserted in the upper chest, just below the clavicle or collar bone, leaving the patient's hands free."

Why a port? You see, I have terrible - I mean terrible - veins. This saves me from needing a peripheral IV ( the regular kind that goes in your arm) every time  need IV hydration, medicine, or other treatment. It can stay in for years and is completely under the skin, and no open wounds ( except when accessed) is always a good thing ;) I am extremely relieved to have this and be able to do all of this at home! My daughter is still a bit nervous about me having this thing in my chest, but for the most part she has decided she likes it because Mommy gets to stay home and doesn't have to go to the doctors for long periods of time (aka: hospitalizations). I totally agree :) 

With the special Huber needle, I think it looks like a Dragonfly. Don't ya think? I love dragonflies :-)

Tomorrow I'll start my first saline hydration therapy (I have no idea what the crap I'm supposed to call it. The Rx says "hydration therapy", so I guess that's what it is.) 

So right now, I'm rocking it! ... or at least trying to, lol.

Maintenance

It seems like it's really hard for some people to grasp that having to be in the hospital from time to time is a perfectly normal aspect of dysautonomia. To others, it seems that being ill and in the hospital means that when you leave you'll be better - and that is what it normally means. But for someone with dysautonomia (or anything chronic for that matter). The truth is, being in the hospital is just a tune up. It's reestablishing equilibrium. 

This is my "normal"

Example: Last week something seriously irritated my gut. I have no idea what exactly it was, or if it was even something specific. For all I know, it might have just been my body being a defiant teenager. The rest of the week I was unable to keep anything down. Nothing. Not water. Not my meds. Nothing. I finally called my doc and he told me to get over there ASAP. Because apparently not keeping anything down for three days is a bad thing. So long story short, I'm in the hospital. Again. 

Sweet, sweet IV fluids... Oh, how I love you! 

And I'm facing the statements like, "Maybe you just need to try harder to eat even if you get sick." 

And questions like, "Well what are they doing to fix this?" and "What if you just do ___?" 

...*sigh*... 

Ummm, no, I can't try harder. No, I can't just do ___. And they aren't doing anything to "fix" this. This can't be "fixed".

There comes a point where you just have to accept that this is reality and part of this reality is hospitalizations from time to time. This one is mainly to give my gut a rest. I'm on IV fluids (miracle juice!), IV meds, and a strict clear liquid diet. After being here for a couple of days my vitals are back where they should be and I'm keeping some of my meds down. My stomach is still ridiculously irritated and I'm still needing IV fluids and meds. But once everything chills out, I'll be able to go home. I won't be cured and it won't be the last time this happens. This is just maintenance. And I'm ok with that. I'm just waiting for everyone else to be ok with it, too.