The Burden of Life

 I’ve been wanting to recount my experiences a bit, process the trauma and all of the bullshit I’ve gone through this year. There will be no “in order” it’s just whatever comes to me that I feel I can coherently type out like a cigar chomping monkey chained to a typewriter. 

Right now it’s memory. As I take tentative baby steps toward rejoining the world, a small errand here, a masked up outdoor event there, I realize I need to take my keys. I forget them all the time. I hardly ever remember my wallet. Mom won’t let me touch cash, so I pay for things with my phone… I am usually with family or mom is home if by chance I am not with her… so keys are just sitting on my dresser. Coming home I knew to expect some things changed - furniture rearrangement is one of my mom’s methods of stress management - but I didn’t expect a lot of my shit to be packed up and shoved away in bins and vacuum sealed bags. I’m only coming out of the haze enough to ask, “hey, where the fuck is my christmas cookie tin of stickers??” 

Granted, the second I stepped in my bedroom the night I was discharged, I immediately noticed the urn with Mr. Destiny’s cremains were missing. Turns out my aunt heard “Pack the cat, leave her dad” instead of vice versa. 

Of course the thought of anyone in my bedroom riffling through my shit gives me the heebie jeebies but that’s another post.

Remembering where the spoons go. How heavy a glass of water is. Where is my lip scrub? Why did you vacuum seal the dumbo plush I sleep with every night? It isn’t amnesia per say, it’s just returning to a world I expected to be deliberately and carefully put on pause until my return. 

I’m only now coming out of the fog enough to nake an attempt to go through the pile of mail that built up; I remember pre-ordering a LP but don’t remember receiving it. Did it ever arrive? Did I fever dream that order? Thankfully I kept the receipt in the proper Gmail folder and my mom knew exactly where to find it; a package I had been staring at every day on my bookshelf for the last month. 🙄

Only a couple of weeks ago I started to sit at my PC. I wanted to get back to playing Stardew Valley - which I resisted playing on the switch my Eldest gave me, in fear I would lose the muscle memory of playing on PC. Thankfully my abstinence paid off and I didn’t run into trees or key smash all over the farm. It’s little shot like this to the bigger shit like remembering how to dress in proper clothes…how to best fit them around my external device how to shower again…how to feel human. 

Part of it is the drugs, I’m not going to dance around that. O’ apothecary, thy drugs are quick! But there is something to be said about the muscle of memory falling as lax as the extremities that wither in the temperature controlled confines of a hospital. 

Holy Shit, I’m a moron

 Okay for whatever reason I convinced myself that it would be TOO HARD to figure out how to revive this blog and start using it again for medical updates. Also that I probably could not update it from my phone.

Uhm. So turns out I was wrong!

I am logged in THROUGH MY GOOGLE ACCOUNT.

For fucks sake.

Hookay. *Jedi mind trick hand wave* you do not know about my Livejournal and will forget everything about it.

So let me give you the run down of my health updates:

* I’ve been told it is time to start the process of a heart & liver transplant.

* I officially started the Evaluation Process on March 15th

* The Evaluation Process is comprised of a fuck ton of tests and consultations, all of which will be compiled into a presentation which will be taken to the Transplant Board. They in turn have a major clandestine meeting in their super secret headquarters in a bunker out in the wasteland of the Salton Sea. They will decide if I am: medically, emotionally, and physically fit for a double organ transplant. 

* Once I am determined fit, I pick a date to get listed. I am not going to get listed until after January 10 2025 (February 18th if David Tennent is coming to Gallifrey One because I sure as shit ain’t missing that) So long as I get listed before March 15th, I am in the acceptable window of Evaluation time.

* Am I scared? Of the surgery, yes. Recovery will be an uncomfortable pain in the ass, but I know once I cross the threshold into stability, I am actually quite excited to go on this new chapter of my life. 

You may comment and leave questions but I reserve the right to patronize you if said questions are dumb.

Image is Everything - Part One

I will explain my prolonged absence from this blog as best to my abilities permit me to do so. So, after this post I had my surgery and it surprisingly went very well and I recovered fully within 4 weeks. No complications, and best of all, with a new battery, I felt like the Energizer bunny. For reasons external to my health, I had hit a serious wall of crushing depression about 6 weeks before the surgery, so with this new found energy, I was really looking forward to getting my life back on track. 

It was November, I was back into a hobby I'd all but abandoned for close to a decade, and to stave off the depression, I decided to focus on personal projects and my friends. I'd determined that the impending 2014 was going to be HELLA HELLA HELLA: I was maid of honor for two friends, a bridesmaid for my sister, and attending another wedding. Seriously, when it comes to a wedding, this is me:

I was also PSYCHED for camp and getting a very early start at volunteering - and just as I started Ye Olde Job Hunt again, I noticed a funny little lump just under my left tit. I ignored it for a couple of weeks, but finally showed it to TEAM RACHAEL! after describing it on the phone. I don't know why I wasn't terribly worried from the get-go, as I am usually the first to assume the worst. Regardless, I was floored when the team told me it was a hernia.
 A hernia?! A hernia?! How the fuck...how the fuck can that even be? Hernias are for old men who drink and eat like a gout-ridden English king. Alas, it is never that cut and dry. My hernia was most likely caused by years of trauma to my abdominal wall via surgery. The pacemaker battery replacement was merely the straw that broke the camels back. 


What is worse, I would have to deal with the ornery surgeon who performed said pacemaker surgery (the more prolific the surgeon = the shittier their bedside manner) and we would have to find a time that worked for both of us. There was no way I was going to risk missing out on any of the weddings - and as both hernias and my own personal recovery times are equally unpredictable, the surgery kept getting pushed back.

Then, more disappointments:

I had to ditch the job hunt. No point in going to the trouble of employment just to have my ass get fired for being out for an unknown period of time.

I had to then ditch camp - something I am still pissed off about to this day. I should not have listened to TR! on that one. Goddamn I am still angry about that.

Long story short, my surgery did not take place until 11 months after it was initially diagnosed. 

And let me tell you..it was pure hell.

-- TO BE CONTINUED -- 

I have no excuses

I have no real excuse for the lack of updates over the last two years. During my bilateral hernia surgery recovery, the pain was so intense that I could not find the spirit to rally my thoughts beyond "I am in pain and I am depressed." 
I have a few half-written posts that never got published simply because I find it too difficult to show that level of vulnerability. So I kept away instead. 

Also, as time has wears on, I grow closer not only to my team, but to people in this Spoonie world overall. So I become self-aware of the impact my words may have on other people. I don't want to alienate anyone, or risk divulging private information, either. I do my best to avoid naming names or referencing any event outside of my own experience. It is an ever growing challenge.

Many changes have occurred in just the last six months alone that I have had to completely recalibrate how and what I want my online presence to be. My big blog, formerly Glass of Win, is going to move from its current state as a self-hosted website to a smaller, quieter entity on a simple Wordpress. I no longer have the energy or a strong enough interest to update it as I once did. I will miss a lot of opportunities, but the rewards were always short-lived and ultimately not as fulfilling as where my energy is being currently directed.

This blog, for all intents and purposes, has always been the more personal outlet and the one, two year vacation notwithstanding, I come crawling back to at the end of the day. I have a private-private journal for the truly vulnerable emotions, but I know a handful of readers really do enjoy my visceral ramblings. So I am going to try this out again. 

Buckle up. 

Insurance beating me down left and right

So this week I received a letter from Medicare stating I owe them $14.4k because they forked over the money to pay for my hospitalization after my partial hysterectomy surgery. Oh, they paid for the surgery - but the fact that I didn't just get up and walk away from it that night and had the audacity to stay 48 hours to make sure I was not, you know, bleeding internally WAS JUST OUTRAGEOUSLY GREEDY.

Never mind they already paid it and it's been two and a half fucking years; I have to back pay them. SO I now have to rally both my GYN and cardiology team to submit ample documentation to support the justification for that stay. 

I am too stressed out to make any witty jokes. I just want to live a fucking normal life where having a chronic illness that needs constant upkeep isn't a punishable offense. 

EDIT EDIT:

Upon further inspection, the bill is actually for the provider - not the beneficiary (i.e. ME). I just received a copy to keep me aware of what is going on. So, apparently, UCLA did not bother to submit the claim until Nov 18th - and by that time I'd had my surgery, was discharged 48 hours later and re-admitted with an infection. I don't know if that was some diabolical strategy on someone's part to make sure I had my surgery anyway, or just some really lazy jackass, but wow. Now, I'm not out of the woods quite yet  - I fully expect UCLA to be petty assholes and come after me for those charges, even though Medicare made it very clear that they deemed me unaware of the situation (which I was) and not at fault or responsible.

This could potentially get ugly.