Hi, I’m Stef, and i have liver disease

I read this article about this girl with an autoimmune disorder, and how she’d like friends to treat her. 

I have this wonky liver problem, and I have a similar set of requests. 

  1. Please come visit me in the hospital- hospitals are boring to be stuck in for 3 to 5 days. True, there’s cable, meal delivery, and a staff of nurses, therapists, social workers, and religious folk from the denomination of your choice. But, they’re not the people I care about. And you know I get it…
  2. Some people just don’t like hospitals- hospitals are where sick and dying people are, and that makes a lot of people uncomfortable. My oldest son is one of those people. He’d rather do anything else than see someone who’s in the hospital, even his own mother. 
  3. Please don’t make me beg for you to visit- I hate that crap more than anything. If you can’t or won’t come, just say so (see #2). But please, for the love of the deity of your choice, don’t make me beg. 
  4. Pray, think good, healing thoughts, or however you deal with people being sick- I need all the outside help I get, whether it’s to a higher power, or just a kind thought in passing. 
  5. Please don’t try and second guess my healthcare team- they have the education and experience to deal with my particular illness. They encourage me to ask questions if I don’t understand something, or question why I’m getting a particular medication, procedure, etc. They’re human and are not perfect, and I guess that’s why medicine is called a practice. 
  6. And please don’t tell me about some pie in the sky “cure” you heard about from your Aunt Sally or cousin Rufus in Bartlesville- I already know that the so called Big Pharma is a racket and that there’s no money in curing disease. There is no miracle cure for anything. I take diuretics, for example, because I can’t drink enough water to flush it out on its own, because I’ll start sloshing like the gas in the tank of my mother’s old Ford Pinto. Plus I have no burning desire to spend my days in the bathroom peeing up a storm. I’d rather have a natural remedy than chemicals, but medical marijuana is still illegal in my state. And forget suggesting anything to do with apple cider vinegar. I’d rather drink the juice from the pickle jar, thanks.
  7. Let me vent, swear, cry, etc- I’m not the kind of person who does the having a chronic illness thing well. The fatigue alone will probably do me in, never mind all the other shit that’s wrong with me because of this stupid disease. Just be my sounding board. Give me a hug. A gift. A stuffed toy (I like bears and bunnies, and maybe a Pikachu or a Rumble the Bison, FYI). Don’t pat me on the head and say, “oh you poor thing…” I hate that false sympathy crap.
  8. Don’t let me get discouraged- things don’t always go according to plan. Sometimes, the docs are wrong. Sometimes I get hospitalized even when I’m following all the advice they give me, and taking my meds on schedule. I do get discouraged. Your job (if you choose to accept it) is to keep me positive. Tell me it’s a beautiful day, or something one of your kids did that you’re proud of, or that your kid’s steer got a blue ribbon at the state fair. 
  9. Most importantly, make me laugh- I like a good dirty joke occasionally; or a bad joke; or whatever stupid ass thing the president did that day. Show me videos on YouTube of your favorite comics. 
  10. Last but not least- be there for me. I don’t care if it’s on Facebook, the phone, by text message, email, or carrier pigeon. If you can visit in person, great! But if you’re Brendon in Australia, or Martin in the UK, or Denise in Germany,  or Vikki deep in the heart of Texas, the other methods are fine. 

Thank you in advance for your support. Together, I think I can beat this, because I plan on living long enough to be a pain the the ass to my grandchildren.

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I’m Stef, and this is where it’s @ !~

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Real time documenting

For those of you on Facebook, there’s a page called “On This Day” the shows select posts from a given day the entire time you’ve been on Facebook. I joined FB in 2007, when you still needed a college email address to join. Over the last several months, I’ve noticed something I probably should have paid more attention to as it was happening.

That I was documenting the symptoms of liver disease as far back as 2007, when I was at Rose State College.

Those symptoms:

  • Fatigue
  • Itchiness
  • Exhaustion
  • Dizzy spells
  • Bruising
  • Etc.

I had gone to several doctors (without insurance, mind you, so it was not an inexpensive endevour) seeking answers. All I got for my trouble were excuses, such as:

  • That I could lose weight (usually suggested by a doctor who needed to lose a few lbs himself)
  • That it was part of getting older (I was in my mid 40s when I was at Rose State)
  • That I was a full time student trying to keep up with kids 20 to 25 years younger than me
  • That I was premenupausal 
  • Etc
  • Etc
  • Etc

So, I got discouraged and quit seeing doctors. If I wanted medical advice that didn’t serve my best interests, I’d just talk to my brother in law the GP. Or my sister who pretty much poo poo’d a lot of my symptoms as a bid for attention. Like I’d make shit like that up for attention…the bruises were/are real, the fatigue was/is real. 

When I went to the hospital on February 11, 2014 thinking I was having a heart attack, then get diagnosed with fatty liver disease, I kinda felt vindicated. I knew there was something wrong and no one took me seriously; not even my own family!

Months later in 2014, when I threw up blood (which I actually took pictures of to show my sister. I ended up not needing them, so they were deleted), I think that’s when I started to be taken seriously. I had ascites (bloating in the abdomen), edema, and chronically low platelets (for which I got the first of many blood transfusions).

I got sick again in January of 2015, was hospitalized for my first pleural effusion, it was decided I needed to see a liver specialist. 

All of this is documented on Facebook! 

I didn’t do it for attention. I did it because after my first hospitalization in 2014, people were genuinely concerned for my well being. 

Who knows where my health journey will take me next. As long as it’s not to a box in the ground, I can deal with the cards I’m dealt.

And besides, I want to be cremated. 

But I plan on living a long time. This is just a plot twist in the Book of Stef. 

I feel like crud today

So what else is new, huh?

I’ll take it easy today and hope I’m feeling better later.

I miss my boring little life before this chronic illness took over. I might be gainfully employed now instead of on disability. I don’t wish this on anyone. It’s no way to live.

Okay, pity party over. Back to your regularly scheduled life…

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I’m Stef, and this is where it’s @ !~

A nice case of vertigo to go with my errand running

So, I did go out yesterday, just as the Great American Eclipse was reaching its peak here, and I discovered this:

It’s the eclipse, but filtered through the trees at my apartment complex. I’d never seen anything like that before, so I posted this picture on Instagram and asked if this has anything to do with the eclipse.

I was told that it was like a pinhole viewer, the leaves acting as the filter. So I saw the eclipse, no special glasses required.

I went and ran my errands and was struck by some pretty awful vertigo. I had a bottle of water with me and that seemed to help some, but I didn’t completely trust my equilibrium at that point, so when I got to the store, I used one of the electric shopping cart buggies. I don’t use them unless I’m in a lot of pain (because arthritis sucks), or I’m have trouble breathing (think pleural effusion), or, like today, I had balance issues. If I can walk, I’d rather do that. 

So I got my few groceries and went home to lay down. FYI, I took the bus. I was NOT driving (and I don’t have a car anyway). 

And that was my afternoon. Exciting, yes? Wait, don’t answer that! LOL

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I’m Stef, and this is where it’s @ !~ 

I’m not a happy camper right now.

These two doofus cats are on my last nerve!

I’m not happy with either of them right now.

Salem decided that my laundry basket was a fine and dandy place to relieve himself. 

Then I discovered that Pazzo did the same thing in a box that had stuff I was giving away to Goodwill. So I have to wash all of it.

And barely had enough laundry soap to do so. Thanks kids (the human ones, not the feline ones)!

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Another thing that’s irking me currently is this stupid eclipse (currently ongoing). I might have liked to be asked if I wanted to go to the places of totality (ahem, sister and brother in law). But now I’m not really interested. It’s all over TV locally, and on the internet as well. 

I now have to go out and run errands. Yay.

Yep, I’m not really rah, rah, rah about anything right now.

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I’m Stef and this is where it’s @ !~

Stef’s further adventures in the Integris Healthcare System: regular follow up in the liver clinic

I hate change.

I went for my usual check up at Nazih Zudhi yesterday, and things were a bit weird.

I was scheduled for an ultrasound, and I thought I had to check in to the outpatient radiology clinic at the main check in as you enter the hospital. When I inquired, a very nice young man actually accompanied me and Scott to the clinic. Apparently, outpatient radiology has a new system to check folks in. Fortunately, I was already checked in (how, I don’t know). 

I got my hospital bracelet and waited to be called back. The ultrasound itself wasn’t too bad, but the liver doc didn’t get the results by the time I had my appointment in the liver clinic. I’m sure someone would’ve called me by now if there was something amiss.

Next was the lab where I had a blood draw (SOP. I get a blood draw at every visit). 

After that, I had about 45 minutes until my appointment with Dr. Patel (Nazih Zudhi has two doctors named Patel, and now I’ve seen both of them), so Scott and I check out the cafeteria. Pretty reasonable prices if I actually had money to spend. A grilled cheese sandwich, for example, was $1.50. The salad bar was 45¢ an ounce. Nothing was over five bucks. There’s a deli down there, too, where things were a little more expensive. 

So Scott and I sat in the cafeteria and played on our phones (yay for free WiFi!) until we headed back upstairs to go to the clinic. 

Things there had changed, too. Last time I was there just 2 months ago, the check in staff just handed you an iPad and you had to answer questions about your health history. Once again, I was already checked in, so all I had to do is wait for a nurse to call me back. 

Once called back, I got weighed (I gained 6 lbs. 😢), Then had blood pressure done (131/86, which is high for me. I think I was stressing over how tight the cuff was). Then Dr. Patel comes in, and he had someone observing him, who also was named Patel! The doctor is kind of hard to understand with his accent, and I had to ask him to repeat stuff a couple of times. He examines me, goes over my blood work, telling me my MELD score was 12, and that everything else they were looking for was more or less normal for me. He wants me to consider being placed on the transplant list now that I have insurance that will cover it. He also wants me to lose weight (says he who’s probably never had to lose weight in his life), and to make an appointment with the nutritionist. 

Oh and come back in November. 

Next appointment is November 15th, the week after Scott gets married. Scott does not yet know if he’ll be able to take me. I’ll check out SoonerRide to see what their rates are and all that, just in case.

I just hope I can stay out of the hospital til then. Because as sure as I sit here, something will crop up in the meantime. 

Think positive, Stef!

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I’m Stef and this is where it’s @ !~

Randomness

When it comes to where it’s @ !~, the subject matter is rather, um, eclectic. I write about whatever pops into my head at any given time; the weather, my health, my frustrations with life, getting older, my opinions. Stuff like that.

Since life is, in and of itself, random, shouldn’t my content on where it’s @ !~ be random as well? 

Because it can’t always be sunshine and rainbows, right? Life is dirty, tragic, sad, frustrating, infuriating, and at times not very nice. 

It’s my story, shouldn’t I tell it my way?

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I’m Stef and this is where it’s @ !~