13 October 2016

A little Thursday ketchup

This is my fight song
Take back my life song
Prove I’m alright song
And I don’t really care if nobody else believes.
I still got a lotta fight left in me.

It’s been a while. Because. I have a life? Haha, not really..  Well, yes. I am among the living. However, I do not have a social life; unless you count avoiding people and reading a book as a social life. (Elizabeth Bennett is doing quite well, if you’re wondering… )

Life has been crazy, life has been hard.
Shortly after arriving in Utah, I started having severe abdominal pain; the kind of pain where you can’t get comfortable standing, or sitting or laying down and the kind of pain that Tylenol is a joke. Then it became the kind of pain where you can’t breathe anymore. My stomach was becoming swollen, hot to the touch and bright red.
I had been rejected for insurance and my new job didn’t have any insurance to offer me. And the only insurance available that I qualified for would require me to live in my car. So I was NOT going to the hospital, and no doctor would see me.
All week, my stomach was growing and growing as the infection (though I’m still convinced that a parasite had taken root in my guts and was growing an alien…) grew.  I was no longer able to do tube feedings or drink anything and keep it down.

By Saturday, I couldn’t take a normal breath without crying. And crying hurt because I’m a deep belly-breathing crier. So, knowing that it meant I would later have to fake my death and move somewhere tropical, I took myself to the hospital.

Remember that time I had a G-J tube? (gastro-jejunum) So basically, the Gastro portion is where the tube entered my stomach. Not just my abdominal cavity but my actual stomach. That tube was there to remove excess air, acid and food that my stomach wouldn’t get rid of. From there, the jejunum tube extended into my intestines. This was because my stomach doesn’t empty. The tube bypassed the stomach so the food could be deposited in my small intestine (which would typically work for Gastroparesis patients, however I also have a condition known as Enteroparesis. My intestines also don’t work. Because I’m a dirt bag and I really like to complicate everyone’s life.)

So yes, that tube, remember that? The J portion apparently had perforated my stomach, meaning it put a hole in my stomach lining. My entire abdominal cavity was infected. So the doctor had to chemically sedate me (yay versed!) to remove the tube. And again, dirt bag over here, my pressure kept dropped to 80/40, 70 systolic and at one point I syncoped (passed out).
A few hours (in hospital hours, which is like 20 hours in real-people time) later, and 3 IV antibiotics later, I decided to go home rather than be admitted, because again, no insurance and poor.  So I had to agree to go back for a week and get IV antibiotics for my guts.

Living with gastroparesis is… strange. Imagine if you will, fast Sunday. For the non-mormons, imagine that day you woke up late, didn’t have time for breakfast and forgot your lunch in your haste to get to work. Remember feeling so hungry you felt sick and every word made you either emotional or angry?
Yeah… That’s kinda how I feel. Every. Day.
Imagine having no energy to do anything. Because you have no nutrition, your blood sugar (which your brain needs to function) is probably in the negatives (okay, that can’t really happen…) you’re shaky, your brain is foggy. Yeah. It’s a great feeling.
In my case, without the tube, if my stomach really isn’t work and it’s a bad flare up, I have 2 choices. One, I can be on a strict liquid diet.  This is hard when you live in a society where everyone is obsessed with food. Myself included. I love food. All food. It’s also exceptionally challenging because the liquids I’m supposed to consume are incredibly expensive. When you’re having smoothies with protein powder and ensure’s or Orgain meal 6 times a day (because with GP, I have to eat tiny meals) you spend far more than your budget allows. So this option became not possible.

Option two. I can eat solid food. Food that I love. But I WILL throw it up. Almost everytime. This doesn’t sound terrible until you learn that when you vomit, you throw electrolytes in your system off. The electrolytes they typically look for in this case are potassium, magnesium and calcium. Potassium is one of the chemicals that help drive the electricity in your heart. Without the electricity, your heart can’t pump. No pump, no blood, dead. (That’s bad.) Magnesium does so much for your body. Low magnesium is bad as well. So when I throw up (sometimes up to 8-10 times a day) I start having problems with my heart (PVC’s, chest pain and trigeminy) that has led to passing out. Also, it destroys your teeth, and the lining of your throat. The teeth is more a vanity thing, and the fact that I’m too poor for dentures. So I can’t afford to lose these chompers. But when you vomit a lot, you can develop esophageal varices. You know those spider veins you get on your legs and how much pressure can be behind them if you rupture them? That’s what these are, except that it’s in your throat where you can’t hold pressure to stop the bleeding. Bad.
A secret third option is to just not eat anything. But that’s not an option because I love food. All food. Except Liver. I don’t understand the point of eating something that’s whole purpose in the body is to filter out the bad stuff…
---interesting side note; you and other normal gutted people, can eat something like scrambled eggs and within 90 minutes, 75-85% of that meal will have exited your stomach into your small intestines. That same meal might hang out in my stomach for hours or days. ---

All that said, I’ve had to balance between not eating, drinking only and eating a puking. This has got me sent to the ER twice because my combination hasn’t worked. It also means that my food intake has consisted of the absolute worst things I can eat, because that’s what I can afford. (thank you dollar store!)
It’s an adventure, to say the least. I’m learning to be creative to survive.

But it hasn’t all be a difficult adventure.
I took an EMT course out here. Loved it. Instructors and admin were fantastic. 8-week EMT classes make me really nervous. I feel like they’re great for recert classes but for people who potentially knew nothing going in, to realizing they know nothing and being able to take a blood pressure and apply a c-collar is kind of nuts. But it was fun.

I got called to be in the stake choir. Which is just ridiculous because I can’t sing. I love to sing, but I can’t carry a beat in two buckets nor can I hit the pitch… But, I figure I’ll go and love singing and then when they realize that this was a terrible, terrible mistake, I’ll get released and go back to being the tone-deaf singer in the crowd. (although maybe being the stake interpretive dancer could be a thing?!)

I got a second job. As a home health caregiver. I actually don’t hate it. It’s nice to be around medical terms and it’s fun to look at the CNA’s and be able to tell them that their patient has a raging UTI.
Me: “whew, have you told the nurse that she’s got a UTI?”
CNA: … she doesn’t have a UTI…
Me: oh yes. Yes yes she does. A bad one. I’m surprised she’s not having altered mentation.
CNA: what is mentation?
Me: …
CNA: How do you know she’s got a UTI?
Me: I smelled it when I came into the house.
When you’re told by your preceptor, your trainer, the charge nurse or whomever that you need to use ALL of your senses when caring for patients and investigating what’s going on, LISTEN. UTI’s, C-diff, GI bleeds, necrosis, ketones,  those all have very distinct and horrible smells… That’s a real thing!

But I like the people I’ve met through there, a lot.
I have roommates, they’re great. I have neighbors, and they’re fantastic.
So yes, that’s been my life. As my hospital bills come in, expect that I will be faking my death and moving somewhere tropical. Roatan anyone?

In other news, I’m going to make a jean quilt because when I came here I owned a total of one blanket that my CA people made for me when I was in the hospital. Unfortunately, it’s a bit short for me. (Surprising, I know!) so I can either have warm feet or warm shoulders, but not both!
Well, Ashlie was super Christlike when I moved here and basically furnished me with everything I needed that I couldn’t afford. (Bed sheets, a blanket, a plate… you know just normal essentials…) but I love warm and heavy blankets, so that’ll have to be a thing when I can make it a thing!

Now we’re just gearing up for the holidays out here. There are a lot of us who don’t have anywhere to go, or can’t afford to go anywhere so we’re planning an orphans holiday (**IF YOU DON’T HAVE ANYWHERE TO GO FOR THE HOLIDAYS, YOU DO NOW! MY APARTMENT, BRING SOMETHING DELICIOUS! Rolls, a side dish, a dessert**)
We’re planning a neighborhood ugly sweater Christmas card picture; if you want a copy of that, let me know!
Yeah, it’s going to be fun.

I’m grateful for those who have been so helpful and kind when things have gotten rough. Panic over medical bills, stress over health and medical stuff, frustrations over meals and lack thereof, worry over running out of medicines, losses and struggles. Thanks for being there. I know I can be a huge dirt bag and as my man Lee Brice tells it “I’m hard to love, hard to love” and definitely hard to live with. (If you pray for patience, you are pretty much guaranteed to be my next roommate, just a head up.) I’ve been blessed far beyond anything I deserve or have earned. Thanks humans! 

1 comment:

  1. Dibe, I love you! You are awesome! Sorry things are being so rough! Hang in there and I will pray for you! Missing you in Hemet. -Kellee Packham