My Life on Lupron

*If you're just joining me, or have come aboard in the last couple of months, I have severe endometriosis. I've already had a radical hysterectomy at the age of 27. Since last fall, I have been in a lot of pain because of a reemergence of my endometriosis that we've found to be inoperable because of the locations of the endometrials. Now, I'm on a six month course of Lupron - a drug that shuts off all estrogen production/targets estrogen cells - to kill these little clusters of hell. 



Lupron is the effing devil.

I'm going into week three or four of Lupron and this shit is making me insane. Certifiably. I think?

Apparently, it feels weirder if you've had a hysterectomy. You get to actually feel it attacking the endometrials. I think it's like the "pew-pew" battles seen in Star Wars. Imagine tiny ships shooting little lasers into the endos, okay? They just load that little estrogen cell filled thing up with medicine, it gets full to bursting, then BOOM! They knock the hell out of that thing, draining all of the estrogen out and save the day!

The pew-pew fight moves on to another endo and the battle resumes. Some of the endos fight back, and that's when the swelling occurs. Can you tell I've had time to think about this?

Lupron puts you in menopause, which I'd already be in, but I went off of my meds for that keep me out of it.

Menopause and I don't mix, okay?

I'm having hot flashes that make me wish the Polar Vortex was still hanging out. Meanwhile, everything outside is swampy feeling. I get that I live near a damn swamp, but does the air have to feel so freakin' offensive? It's not just hot, it's like I step into a wet towel fresh out of the sauna from hell.

My apartment's thermostat is set to 75 degrees to keep the other inhabitants comfortable. However, all ceiling fans are going full blast at all times. I'm guilty of sticking my head in the freezer, sticking the ice pack thingies under my knees or arms to cool down, and yelling to an empty apartment, "Just stop moving! I have to cool off!"

I want to move to Antarctica.

I'm saying stuff out loud without meaning to. You know, more than usual. That self editing thing I'm really bad at? Oh God, it's just gone, if it was ever there. I've asked the kids to breathe quietly, to stop smiling so loudly, and then apologized. I've told the dog she's too fat, the cat that she's an embarrassment to felines, and then cried. I've told my husband he can't touch me, then cried when he didn't hug me. I've cried over insurance commercials.

To add insult to injury, my stupid hair is falling out and coming in gray. I'm pretty sure this crap is getting chopped off. Not that this is an irrational decision (ahem, people who have said that).

You see, I'm a hot flashin' mess. Not literally a hot "flashing" mess, but a hot flashin' mess. Whatever.

And the food. Oh, wow... the food. I'm going to turn into a Lemon Creme cookie before this is over with. Or a container of Hagen Daaz Salted Caramel ice cream. I have very little willpower.

Just a snack

I'm so damned ragey. I have rage. I can't write about it, or much else, though, because my brain ditched me somewhere around the time that damn needle was put into my buttcheek.

I have these thoughts? And when I think them? They sound awesome. Then, when I write them down? I can't decipher (see what I did?) them sober or drunk. Not that I'm getting drunk, because that causes more friggin bloating and less operational thinking.

So, what do I do with this rage? I thank baby Jesus in swaddling clothes that I'm on Prozac every single day and I try to stay away from the general public. True story.

It's been easy to stay away from the public for the last couple of weeks because it's either been raining or I've been so swollen, I've needed to stay inside. I can't waddle to the pool. But, with sunnier weather on the way and these fluid pills finally working, that hermit plan is kind of over. I need to remember, "inside voice."

I also make really awful memes. You're not seeing them because they, well, suck.

See?

Let's just hope that that the remaining five months of this crap are quick, without incident, and my kids finally get to go swimming because they have to get out of the house and stop leaving Legos and trains everywhere. 

I also need to keep, "Jessi, inside voice," on loop in my brain, I suppose. 

Sometimes, this female crap sucks. 

When Nightmares are Reality

I had a dream that, at first, was so real, I nearly believed it to be true. We were at the beach. I was healthy, playing with the kids, running around, laughing, free of pain and everyone was smiling. My mind then whispered, "This is a lie. You need to wake up." In the dream, a tidal wave filled with pain washed over me. It tore away the happy moment, the laughter, and the smiles. Then everything went black, cold, and I was in gut wrenching pain.

I woke up drenched in sweat and found that the tidal wave was real. I was in pain, a lot of pain. And that pain was washing over me like a tsunami.

That dream is my reality.

Dreams are, very rarely, reality. Unless they're nightmares.

I keep hoping and praying that this is all in my head.  That this is just a nightmare. That this is psychosomatic, that this really isn't happening. 

But I know it is real. 

It is happening.

I am not making this up in my head.

I'm certainly not dreaming it. 

Illness of any sort will have an effect on any person and any family. In an autism family, like mine, I think it's harder. We already feel like we've been running a marathon for years that is never ending. The finish line, as soon as it's in view, recedes back into the distance (thanks, regression, you're an asshole). Throw some illness in there and all sorts of things pop up. Like Morgan perservating on the idea of me dying, and him scratching his head (new stim) until it bleeds. Then Bay had a potty accident at school for the first time the other day and who has been exceptionally sensitive lately. 

They are both terrified and I can't blame them. Their mom isn't their usual mom right now.

My biggest fear is not being able to take care of my children.

When we noticed autism in Morgan, one of the first things I remembered thinking is, "I can't die. I can never die because no one will be able to take care of him the way I do." I find this sentiment to be true for a lot of special needs families. I try not to think about it, but it's always there. 

That dream was easy to interpret for me. This pain washes over me in waves, stealing moments that should be, by all rights, mine to enjoy. It knocks me down, tears everything apart, and even knocks me out. It's drowning me. 

This is scary. 

I am trying to be so damn brave in front of the kids. To not break down. But that is incredibly hard when I can't escape my own body.

*Editor's note... I promise sometime soon I will get back to talking about autism. I swear. It's just that right now, this is what is going on in our life as a family and it's the vortex that sucks everything in. This blog is also my place to vent. I won't make apologies for that. 

A favor, please

Dear Readers,

I'm not looking forward to this next month. In fact, I'm dreading it.

In the next week, I will have to take Morgan to the neurologist to begin testing for seizure activity and then, on Friday, I have my consult for my surgery for removing endometriosis from my bowels.

Fun stuff, huh?

I always say that when one shoe drops, get ready for the next one... because God knows, it will hit. But I'm kind of a pessimist.

I know that insurance will not cover the full cost of my surgery. Our insurance is just plain crappy like that. We have a deductible to meet and it's high. To put just our drug plan into perspective, each month, I spend $97.00 on one drug, just one, and that's for me.

You can't see the pillow & heating pad separating me from my loves

The best things about the month of October are Morgan's birthday and Halloween. I love, love, love planning parties, but this year, I know, will be different. I will be recuperating from surgery. I might not be my "normal" self. With the OOP (out of pocket) expenses, things will be tight. Also, this kid (and his brother, to be honest, who isn't handling things well at all), needs cheering up from dealing with his mom being ill.

Even at my best right now, I'm limited on what I can do. I cannot stand for long periods of time because I will double over with excruciating pain and pass out. I vomit- a lot. I cannot drive right now because I never know when I will pass out. I cannot do all of the 1,001 things I normally do.

We're cuddling a lot, but I cannot stand to have them touch me because the pain is that intense. It's like childbirth, but worse, because it never ends.

They are witnessing me pass out, vomit, and/or scream from sheer pain, even when I try to hide it from them. This is not something a child should ever see. Ever. They are worried and it shows.

We need some cheer, y'all. 

So, I'm going out on a huge limb here. I'm doing something that I would never think to do in a million years.

People keep asking me, virtually, how can they help? I keep mulling this over and this is the only thing I can come up with. I'm asking that each person who reads this blog send Morgan a card, if you can. You can send a present, if you want, but a card would rock his socks off.

Please, help me cheer my kid(s) up. Help me make Morgan's birthday extra special. He knows that I write this blog about him and our family. He loves mail, in any form. He loves postcards from different places, cards, packages, etc.

Bay does, too. I'm including him in this because, frankly, it's confusing as hell for his five year old brain to process his mommy being in this much pain and passing out from it. Also, sibling rivalry isn't pretty.

Messages posted to my Facebook wall are great, too.

Morgan's birthday is in the third week of October. I'm hesitant to post his actual birth date until the actual day because of privacy issues. I feel like I'm already baring my soul and pride in this post and blog so much, so some things should be kept private until they cannot.

Should you choose to send something to my son(s), here is how:

You may mail letters, postcards, cards, or packages to

Morgan

c/o Thomas Cash

Laborde Products

74257 Hwy 25

Covington, LA 70435

Morgan loves Thomas the Tank Engine (obviously, there are whole posts about this) anything. There is a new movie out called "King of the Rails" which he is incredibly excited about and there is a ton of paraphernalia surrounding it. He also likes Mario Kart, books on trains, Clifford the Big Red Dog, the ocean, reefs, and shells. 

If you're interested in sending something to cheer up Bay, he loves Legos sets, Skylanders, art supplies, books on anything (especially level 1-2 readers), and Minecraft. 

From the bottom of this mom's heart, thank you for the love and support that has continued to pour forth to me and my family. If anyone every tells you that online friends aren't real, they're lying. I've had more people check in on me to give me a laugh or offer an ear this week than I ever thought possible. 

Love,

Jessi