On the day I die

​Found this on Facebook, and it’s too good not to share. ~Stef



On the day I die.

On the day I die a lot will happen.
A lot will change.
The world will be busy.

On the day I die, all the important appointments I made will be left unattended.
The many plans I had yet to complete will remain forever undone.
The calendar that ruled so many of my days will now be irrelevant to me.
All the material things I so chased and guarded and treasured will be left in the hands of others to care for or to discard.

The words of my critics which so burdened me will cease to sting or capture anymore. They will be unable to touch me.
The arguments I believed I’d won here will not serve me or bring me any satisfaction or solace.
All my noisy incoming notifications and texts and calls will go unanswered. Their great urgency will be quieted.

My many nagging regrets will all be resigned to the past, where they should have always been anyway.
Every superficial worry about my body that I ever labored over; about my waistline or hairline or frown lines, will fade away.
My carefully crafted image, the one I worked so hard to shape for others here, will be left to them to complete anyway.
The sterling reputation I once struggled so greatly to maintain will be of little concern for me anymore.

All the small and large anxieties that stole sleep from me each night will be rendered powerless.
The deep and towering mysteries about life and death that so consumed my mind will finally be clarified in a way that they could never be before while I lived.
These things will certainly all be true on the day that I die.

Yet for as much as will happen on that day, one more thing that will happen.
On the day I die, the few people who really know and truly love me will grieve deeply.
They will feel a void.
They will feel cheated.
They will not feel ready.
They will feel as though a part of them has died as well.
And on that day, more than anything in the world they will want more time with me.
I know this from those I love and grieve over.

And so knowing this, while I am still alive I’ll try to remember that my time with them is finite and fleeting and so very precious—and I’ll do my best not to waste a second of it.

I’ll try not to squander a priceless moment worrying about all the other things that will happen on the day I die, because many of those things are either not my concern or beyond my control.

Friends, those other things have an insidious way of keeping you from living even as you live; vying for your attention, competing for your affections.
They rob you of the joy of this unrepeatable, uncontainable, ever-evaporating Now with those who love you and want only to share it with you.

Don’t miss the chance to dance with them while you can.
It’s easy to waste so much daylight in the days before you die.
Don’t let your life be stolen every day by all that you believe matters, because on the day you die, much of it simply won’t.

Yes, you and I will die one day.
But before that day comes: let us live..

~ John Pavlovitz

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Since the last post…

I made an appointment with a primary care professional (a nurse practitioner) for a full checkup. She ordered a bunch of tests and lab work for me, prescribed some meds, and we generally had a nice conversation about my health history. 

Yesterday, I got the results from my blood work. My platelets are still low, but not low enough to cause concern apparently. They’re below the normal range of 125-150/mL, which does concern me

I don’t have hepatitis or HIV (which I was pretty sure about anyway), my thyroid is slightly elevated (again, not enough to cause concern), and my a1c is normal, meaning I don’t have diabetes. 

The prescription was for an anti histomine to combat the constant itching. It was called in, but SoonerCare is taking its sweet time in deciding if it’s an eligible drug to be covered.

All in all, I’m in pretty good shape despite the liver disease and the need to lose weight (lost 4 lbs since my trip to Nazih Zudhi in August). 

I’m going to have a mammogram and a bone density test at a later date. 

Loads of fun, yes?

Don’t answer that! Just all part of getting older. Yay. 

===

I’m Stef, and this is where it’s @ !~

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.

===

I’m Stef, and this is where it’s @ !~

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…

===
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

===

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.

===

I’m Stef and this is where it’s @ !~