So Do What You Want, Just Don't Go Dark On Me

Well, hello there.

I have not blogged in a while, or quite frankly written anything at all, because mama says if you don't have anything nice to say, don't say anything at all, and well, that's where I've been.

No one wants to be pummeled with my constant bad news or negativity.  Despite the insane events of this year, and my illness over my lifetime, I am, at my core, a sarcastic, (what I consider to be) funny person, who tries to find the humor in any situation; and lately, I just haven't been able to be that - I've been a sad, negative Nancy.

So that has been me, putting a pause, on any and all health-related discussions.. 

Until this past week.  This past week I finally hit my breaking point.

For a quick refresher; back in February, my Emory gastroenterologist discovered that my stomach was far larger than it should be, 100% dead, and sitting in my pelvis.  Therefore - it needs to go.

I have lost my entire large intestine and have an unhealthy small intestine.  I have already had parts of my small intestine removed due to emergency surgeries.  You can survive without a large intestine, but you cannot survive without a small one.

My dead stomach/unhealthy small intestine combo is causing an astronomical amount of pain and the reason I rely on total parenteral nutrition in order to survive.  At this point, I cannot consume anything by mouth, as the entire pipeline does not function.

I need my stomach removed and my unhealthy small intestine reconstructed in order to live, in order to give me some quality of life.  When I tell you I am so tired of hurting, I mean I am so fucking tired of hurting; but throw the pain out of the equation - I just want to you know, extend my time on Earth.

Obviously, this is an extremely complicated surgery, which is why my Athens surgeon has wanted to defer to the experts.  I am an established patient at Emory, and as many of you know, they have a reputation for being "the best" in the State.

I am not even going to go through all of our phone conversations, because it infuriates me so badly, but I'll leave you with our final one last Friday, delivered via e-mail:

"We have decided your case is too complicated.  You have too much scar tissue for us to perform this operation.  Please reach out to a local surgeon to see if they can help you."

I will say that since I've been with Emory in 2019, this is not surprising, but what infuriates me so horribly is that this can happen.  Someone needs a life-saving surgery, someone needs your help in order to complete basic day-to-day operations, to maybe have a pain-free life, and you know, uh - LIVE, but - nah, bro.  Call somebody else.  Say what?! And I cannot be the only one experiencing this problem with them or the healthcare system in general. What do people do??

I can't even.

I cried, I wept, I cussed, and I called my Athens Gastro Office to let them know the news.  I am extremely lucky in that I have him as an option.  We'll meet soon to discuss what we will do now (after this week and weekend, I'm hoping sooner rather than later), but if I didn't have him - I don't know what I would do next.  Mentally; I would be a disaster.

It makes me infuriated at the healthcare system overall and I've just been angry at the world.  I do my best to pretend that things are normal, I joke, I do my make-up, but I am hurting so insanely bad every day that I do not know how much longer I can take it.  This is how it is for us sick people; you've got these parts of your lives that are amazing (your friends, your hobbies, your families, etc) to live for, but these illnesses and subsequent side effects, battles with hospitals, insurance companies, juggling/measuring medications, all on the side, and it is exhausting.  As I've said before, it's a Jekyll and Hyde scenario every day.

I have also had now around 25 surgeries, and at this point, going under is just another day.  It's just not a big deal.  When I think about this operation, however, I am absolutely terrified. As much as I have had to talk about it, communicate with doctors, hospitals and PAs, I have purposefully not sat here and thought critically about this operation because it scares the ever-loving shit out of me.  It's going to be one of the biggest procedures I have ever undergone, and with even my Athens surgeon wanting to default to anyone else more experienced to do it; it just makes me hella nervous.  I recently had a chest port placement that is absolutely kicking my ass, and to struggle from something small and insignificant has me scared for something so massive.  If I can't heal from something as easy as a port placement, how am I going to overcome this thing?

Recovering from big operations is just exhausting and painful.

So switching gears...

This is also a huge thank you to the massive support network that I have.  I am blessed beyond measure in this way.  I appreciate everyone who has checked in and even asked my least favorite question - "how are you?", because I know it has well-meaning intent behind it, I just hate having to respond with bad news and a negative answer every time.  It really sucks to have to be negative, because the honest truth is not positive, and I want to operate on the
happier side of things when I can.  Thank you to everyone who has talked about anything other than what is happening also - it's just nice to talk about something other than my health (although I recognize the hypocrisy in writing this entire post with that statement) and I'm grateful to anyone and everyone who has also just given me space and talked about anything but.  Lately I just turn to a puddle of tears any time I have to discuss anything related to what's going on, so I just want to distract myself with normal people things (again, I know I'm a hypocrite in blogging, but I feel the need to update, and vent as well - I need that too 😂)

Fingers crossed for more positivity in the next post.. :)

Currently *Still* Listening to "Don't Go Dark" Bleachers