Blood From Turnips
Hello my darlings.
Welp. It’s been forever and then some. I’ve wanted to come onto this silly blog of mine so many times to say…anything over the last few months, but no matter what I came up with, it paled in comparison with the active sewage fire that is the world as a whole right now.
I kept thinking I would hop back in once things normalized to a degree. When it felt right to talk about our lives like it’s not a tiny splinter in a termite-infested national home.
There’s something to be said for the acceptance that things are just not going to disappear into that goodnight where we can just shut it all off forever and pretend there’s even such a thing as normal anymore. Or maybe there never was.
But. As my blog is my mental dumping ground for all things confessional, the place I work through life, and the place I keep everyone up to date on life things, here I am, unpacking.
A few Fizzy Family things to note, really.
First up: On October 3rd, I woke up in super not okay pain. Hubs whisked me off to urgent care, I was sent to the ER from there, and I’ve been trapped in bed ever since. I’ve lost 60-ish pounds in about 3 and a half months. I had my gallbladder out. Passed my first ever kidney stone. Was hospitalized for a week, missed my son’s birthday, had to sit out every holiday, and haven’t been able to eat much more than Ensures and soup since that random October 3rd. I’m generally so weak I can’t even sit up in bed to read or write.
I’ve had more doctors appointments and tests than I knew existed, I have had many of them twice. I had a spinal tap. That spinal tap didn’t go well and I spent a few days leaking spinal fluid. I do not recommend this.
Here’s what we know: My gallbladder stopped working. We thought that was the problem. Nah. My stomach is partially paralyzed, a disorder called gastroparesis. We thought that was the problem. Nah. Then we discovered my brain is being squished by spinal fluid. We thought this was the problem. Nah.
This list goes on for a while.
However, they learned those are all symptoms, not the cause.
The cause is a disorder called dysautonomia. Cliff’s Note version is this: It’s neuropathy throughout my whole body, and it’s shutting down basically everything.It is a common disorder in one degree or another. Most of the 70 million people worldwide don’t even know they have it. However, this level is NOT common. I have a very severe case, or “global” dysautonomia. It can, in fact, kill a person.
Whiiiiiiich is right where I’m at. My organs are just sort of…shutting off. My gallbladder was fine, but it just closed up shop one day. My stomach just doesn’t work and I can’t eat. The blood vessels that take away spinal fluid waste from my brain have stopped functioning properly. I keep getting kidney stones. I can’t see well. My memory and concentration are nonexistent. I can’t walk without falling over or blacking out. I ride in a wheelchair now. It’s gotten to my heart and my blood pressure and pulse are borked.
Basically, I’m shades of fucked I didn’t think were possible.
Randomly: All the bizarre health problems I’ve had over the years? They are tracing them back to this disease. They believe it first showed up when I was 12 and started having untreatable migraines. The 60+ migraines I’ve been having the last year and a half? Same. The massive migraine that led to the heart attack? Possibly.
The doctors think my autoimmune disease, psoriatic arthritis, is what kicked this shit into high gear on October 3rd.
There is no cure, but there are treatments, so that’s what we are desperately searching for. The good news is once we find the successful treatment? I should sort of just…snap out of it. Like, I will all of a sudden be able to walk and eat and all of it. I’ll need to be on something for the rest of my life, but, hey, I’ll take it.
So, yeah. I’m actively trying to not die? Now that we know what the problem officially is, we are rooting for a successful treatment. If we can’t find it in the next few weeks, I will be shipped off to the Mayo Clinic and we will kick some ass.
Bottom line is I am quite annoyed and man does this disorder not know who it’s tangling with.
Late 2015, my husband was hospitalized when he became suicidal. He was on disability for a good chunk of time while he did outpatient care, and has been in treatment and therapy and so on every since.
Please note I got full permission from him to tell these tales.
The secret here that almost no one knows is this:
He never really got any better. At all.
Some bits improved. Some bits got worse.
He is still suicidal.
There was a lot of confusion. He was doing everything right, sort of. He was going to all the places and taking all the medications and he definitely wanted to feel better, but he wasn’t at all committed to it, if that makes sense.
Many parts of his personality got worse. For a long time I blamed this solely on my health and the extra strain my illness was putting on his recovery.
I can’t imagine it’s been fun for a second to be trying to deal with his own severe illness while your significant other is completely invalid.
I’m going to try to be succinct and plan to come back to this all in a later post because I think it desperately needs to be discussed, but I’ll be very honest there were some very DEAR GOD moments that had me trying to figure out how to keep him alive but also how to get the kids and I out because things had severely deteriorated. (Note in like a, fearing for our lives or danger way, FYI. BPD tends to cause people to be less than considerate to their loved ones. Again, I will do a post all about our group experience soon.)
There was a day, a very bad day, where I ambushed him at his therapy appointment. I cloak and daggered some serious shit from my sickbed over the course of weeks.
We were losing him to a disease that had taken over.
After my months of dealing with doctors trying to treat symptoms, not causes, it hit me.
I was sure, like 100% beyond a doubt COME AT ME BITCHES sure that he had a disorder that is notoriously difficult to ever diagnose, let alone treat.
So. Ambush. I’m not even sorry. I will always do whatever needs to be done to save a life.
The poor lad was diagnosed officially with Borderline Personality Disorder a week later after therapists, doctors, evaluations, DNA tests, etc. weighed in. (The DNA test showed he wasn’t absorbing any of his medication properly. Some of it not absorbing at ALL. Which…is not helpful.)
He’d spent years being treated for anxiety and severe depression. Which were accurate. But they weren’t the dragon to be slayed. It’s like he and his doctors had been fighting the pain an organ failure from cancer without even knowing the cancer was there.
It’s damn near impossible to get better unless you know what you’re fighting.
Yes, we have taken many a-moment to blink wildly at the surreal parallels between our situations.
My body gave out, but my mind was still mostly functioning. His mind was under seige, but his body was working fine.
If you combine us, we are either one super-bionic person, or we are a HOT DAMN MESS.
It has waffled back and forth between those more than a few times, not gonna lie.
Drew is now being treated for the disorder and the symptoms, his medicine has been tailored specifically to the way his body metabolizes various drugs. He will have good days and bad days and some really awesome days and some scrape him of the emotional floor days.
He is trying. He is working hard. He’s got this, and he’s got us for support.
(BTW, he is @quikchaos on Twitter and looking to bond with other people with BPD, so he encourages anyone to reach out to him to talk or just be pals! Also, I am very really stuck in bed, so I am also around for chats.)
Add in an election season that would make Lucifer himself say, “Okay, but dial it down guys, damn.” and things are bananas.
I took all those after-school specials way too literally as a kid and honestly never thought to hide who I am as a person while always being welcoming and respectful of others. (I mean, I certainly try to?)
Yeah. That didn’t fly once mid-October hit.
I put a Hillary sign in our yard. I have been punished for it ever since.
Literally. Local people have formed these like, bizarre mean-girl gangs to taunt and harass me. We’ve had someone threaten to shoot me or burn our house. Parents have had their kids start picking on our kids.
Not that I want pity or anything, but none of these people started acting this way until after I became bedridden, for the record. And every one of them knows exactly what my health situation is.
They are punching waaaaaaaaaay down right now.
But hey, they find it funny and of my own doing for being liberal in a hyper-conservative city, so whatyagonnado, amirite?
In the spirit of full-disclosure, I don’t have the patience I once did. For 8 or so years, I’ve lived here, letting people make mean cracks about me and smiling through it. I’m used to saying “hi” to other moms when I chaperone field trips and having the other moms scowl at me and literally walk away without replying. I’m used to people slamming into me with their carts at the grocery store just because I look different. (Seriously. Thing that happened.)
I can find redeeming qualities in just about anyone, and be friendly even to the most hateful folk. In the past, I’ve always tried to keep the peace and never speak up when they behave in these ways because I didn’t want to have this exact sort of thing happen.
But I am too damn old and too damn sick to allow toxic people to take their doormat stomping desires out on me anymore.
For the official record, not every person here is a monster. (I am shocked to hell at some of the people who turned out to be. Dude.) There are a few people in this town that are goddamn treasures. Honest, good, thoughtful, caring, kind people.
When my air rescue comes, I hope there’s room in the chopper for those folks. I hate the thought of leaving them here, but we all know damn well we can’t stay here anymore.
As you can imagine, this has all been a hoot and a half on the kids. I have them both in counseling to try and stay ahead of things. And for the first few months, things sucked, seriously, but the kids and I are really finding our groove here.
I hate all the suffering they’ve had to feel, and see from us, but man, these kids have developed some nuclear level empathy that will live on in legend.
Silver linings, baby.
And that’s the update. We are in a desperate quest to get the wild holy hell out of here as soon as possible. One so hubs and I can both have access to specialists that can give us the care we need.
Plus, there’s that whole the pitchfork-wielding townsfolk periodically threatening to kill us thing.
Looking at things through the filter of what’s happening in the world right now, our lives don’t seem important in the slightest.
But within the walls of this house, lawd, we are fighting hard to keep swimming.
And we will. We will triumph.
Plus, I need to get healthy because I am very disappointed I haven’t had the opportunity to punch a single nazi.
That’s just wrong.
I still hope you all are well and wonderful, but realistically, I hope you all are finding a way to survive and resist and find flickers of joy wherever you can.
Until next time,
Peace, Love, and Keeeeeeeep Swimming