Things I Wish People WOULD Say To Me

Having a Chronic Illness is really, quite possibly, one of the most awkward things to enter your life. Akin to a "Kick Me" sign on your back or a big booger hanging from your nose that nobody bothers telling you about, it's just socially something many people do not know how to handle. "What if I say the wrong thing?" Is something that I'm sure runs through the minds of many peoples' minds--or maybe not, based on the strange, random, and rude things I've been asked, told, and suggested; but I digress. 

Often times people with Chronic Illnesses dwell or warn againt the negative, "DON'T say/do thus and so..." but then we never bother to give you the other side of the coin and tell you things we wish people WOULD say or do for us. And, I think, it's because we so often dwell on the DONT

and "I rather you didn'ts" that so many of our friends are scared away. 

Come back, dear friends, because here is (my personal), list of::

A FEW THINGS I WISH PEOPLE WOULD DO::

1. Ask how my health is, not how are you but how is your health? And then listen with intent and purpose. So many times it feels as if, when asked by friends, we aren't being listened to because we are reporting much the same thing to you (nausea, fatigue, vomiting, doctors visits, etc) but that is the mundane routine of our lives a lot of the time. We know and understand that you want us to be better, 

WE want to be better, but, for the majority us, it's not going to be mediconed, protein shaked, deep tissue massaged, or surgery-ed away, it's just...life. 

2. I wore [insert color here] in support of you and your disease and posted it on social media today because I know your disease is rare. I know that this might seem trivial, but it's not! It means that you're thinking about me, you're thinking about the cause at large, and you're thinking about getting the word out there. Every little bit helps, right?!

3. Would you like ME to come visit YOU? I live in the middle of nowhere. I know this. I've lived here since the dawn of time. Nobody wants to drive here, but somehow the distance becomes shorter when I have to drive to someone else. It would be awesome to have a person come and visit me, knowing that merely getting ready makes me tired (I don't know that I've ever said that out loud before). 

4. I looked up [insert disease(s) here] to hopefully better understand. The willingness of a friend to take the time to look up another's disease(s) to try and better understand what they're going through means a lot. You can only learn so much can through the Internet, but it still shows a willingness to learn and not just ASSUME things. 

5. I was thinking of your recently, so I dropped a card in the mail, actual snail mail, so you should be getting it soon. Receiving a card in the mail, just because, is so awesome! Particularly for someone who is Chronically Ill. Getting that little pick-me-up at random can get us through a hard time better than any medication can (trust me, you'd be surprised). It shows that someone in the Outisde World is thinking of you. When you're so often sick, you start living in a bubble and it's all routine and humdrum, so a card can do wonders. 

I hope this list, in no particular order, sheds a little light onto what makes someone who is Chronically Ill smile. Being listened to, being supported, being visited, and randomly surprised (at least for this chick)...and chocolate never hurt anybody either!!!

Riding the Hallway Gurney

Spending my Thursday from 2pm to 8:30pm at the Kaiser Emergency Room is not my idea of excitement, but that is exactly what I did with my afternoon and evening. Let me be one--of countless numbers of people--to tell you::Chronic Illnesses are like vampires and they suck! They steal your life, your joy, your friends, your family, and--if that isn't enough--your money. 

I digress...

I have had left side abdominal pain for a couple of days now--my left side hates me--but I didn't know if it was due to my recently Gastric Neurostimulator adjustment or something else, so I ignored it. Today the pain was so HORRENDOUS I was wanting to double over while at work--can't exactly do that in front of a bunch of teenagers. I gave in and drove myself to the ER thinking "it's the middle of the school day. People will be at work. Kids will be at school. I'm golden!"

WRONG!!

I checked in pretty much at 2pm on the nose; I didn't get put into a bed--a gurney--until 5:25pm! Sweet Mother Of Pearl! My gurney was also in the
hallway...next to the nurse's station...a filing cabinet...and a stone's throw from the check-in area. I know what EVERYONE'S shoes sound like!

Finally, the doctor came (one I had around Christmastime) and we talked about what might be going on. He ordered blood and urine samples--the usual. FIFTEEN MINUTES LATER the nurse came to start the IV and ask me to go change into a gown and do the sample. I think everyone was just working in slow motion. 

Around 7:45 the doctor came back to let me know I have a kidney infection...again. There doesn't seem to be a way to tell WHY I've gotten another one, but because there's pain with Gastroparesis, it's hard to discern the kidney infection pain from the Gastroparesis pain. He ordered for me to get a little more morphine before I was released and he sent me home with antibiotics, Phenergan, and pain meds. 

Being home now in my comfy bed feels nice. My tummy still feels painful, but I'm in a bit of a blissful fog still. I highly desire what I call a "left-ectomy" as that is the side that always gets the kidney infection, has Alfred my Gastric Neurostimulator, and is close enough to my stomach--haha. Any takers on giving me that left-ectomy, give me a call!