Starting to Get Excited

We leave tomorrow for Vegas for 4 days. Really two, but who’s pissed about it? Ok, I am. No other choice, but still pissy about it. Monday I have to work from 2am -10:30, so we missed the morning flights. Only other ones are after 6pm. So we get there at 9 and ? Won’t we be tired? I know I will be. And then we fly back Thursday morning at 10am, so that’s not a day to count either. So we have Tuesday and Wednesday. Probably be ready to kill each other soon in to Tuesday.

Really sucks that we won’t have as much cash to take as we thought. And we really aren’t taking much to begin with. But of course, cars will break down. They need tires and windshields and batteries and that’s all in one week. I laugh so I don’t bawl. BUT – we still have some, and should be enough to gamble a little.

My uncle died. I liked him a lot. He stepped in when Dad died and helped my mom tremendously. He had trouble with his memory a few weeks ago, so they starting running tests, found an inop brain tumor, and he died Tuesday. They were planning a trip. He didn’t expect to die this week.

Scared me again. I’m not scared of dying itself. I’m scared of not living. I don’t want my kids to have to dig through my clothes and shit or have them find My Drawer Full of Female Goodies. I do have letters in my underwear drawer for everyone. I need to update them. I also have a file entitled – Things to Do In Case Angie Dies. It covers mostly online shit. This blog, my FB groups, user names, passwords, etc. But there will always be more to tell everyone. Few people are 100% prepared to die. But with no warning? I don’t dig that. Not at all. Of course, the long progression into’s I’s disease means that we get to pre-mourn for years. It’s always there. Waiting. Fucking waiting. It’s just as strong as grief felt after someone’s passing. I am heartbroken about I just as much as I was/am about my dad’s passing. It’s devastating. I can only imagine what the grief morphs into when the time comes. Nothing good. We’ve been this way – living on a tightrope between sanity and the fucking funny farm – for almost 9 years now. Not sure how much longer we will have – but I hope it’s a long long long time. I hope this exon skipping drug for his type of Duchenne works AND the FDA approves it. That’s pretty much our only shot. Nothing else is really recruiting for anything “major”. Heart and Lung trials – which excludes entry into the more important studies. THen again, his heart is starting to enlarge, and his pulmonary scores are starting to decline. He’s leaving his hooneymoon phase and starting to really progress into the active window for Duchenne.

And there isn’t a fucking thing anyone can do about it.

Getting Excited Despite My Anxiety

I can’t wait. Next week Jay and I will be on a plane headed to Las Vegas. My husband of almost 30 years. Happier than I’ve ever been. Trying not to wait on the other shoe to fall. Trying to enjoy life as it comes. Trying to get through the day without crying about my son. Some days that’s harder than others.

He’s asking about his future. Wanting to know if he’ll be able to drive, date, marry… I tell him of course it’s possible. I tell myself to believe that anything is possible. I want to believe that he’ll defy the odds, but it’s hard to battle this monster – Duchenne has never lost a battle. Never. No cures, no real treatment. Just a progression into hell.

ANyway, this was supposed to be a happy post. We’ve never been on a honeymoon. We went to FL last year for his sister’s wedding, but he was sick the entire time. Every other vacation, I was sick. Throw us some – let no bad happen – vibes. Planes make me hurl. Please plane driver, don’t scare the shit out of me.

Decisions Decisions

Jay has been offered two jobs. We are trying to pick the right path.

First job is to stay with the same company, just be promoted up a level. The Boss instead of the business sales guy. Nice chunky raise. Decent benefits. Perks would still stay the same working for same company.

However, his company has been bought twice the past 3 years. And this current owner is HUGE but we’re not sure what direction they’re headed. That’s why he was looking. Jumping from the Titanic. Maybe.

Second job is with a small IT company. They do very nice business. He would manage, so our livelihood wouldn’t be contingent upon him selling. That is awesome. That means a steady paycheck. The same amount each week. Awesome. And, they have bonus. We would average around $3000 every quarter if they stay on the same growth pattern.

Negatives? New company. Small. No insurance. Insurance on the market is high. Then again, I have insurance offered at my work – a government job. It’s not the bestest, but it’s damn close. Yeah, I checked. It would still be half of what we would pay on the marketplace. I prefer the IT company. I like steady money. I’m trying to manage finances with checks that have ranged from 780-7564. We still live as cheap as we can. Couple of those slower months can kill you. Scary times, sometimes. Of course, he’s had 3 awesome months. But how long until it slows again? I hate it. I just hate it. Panic and anxiety at your service.

However, if the Titanic pays what we think it pays, then he wants me to stop working. He said he wants his life/wife back. But he’d be gone all the time – all the time. I almost couldn’t work, as there would be no one here with Ian and Bana from 2am – 9am. No. Just no. Not worth it. I hate sleeping alone.

Family Update 2019

Haven’t updated in awhile. Let’s start with MB1. Tyler just turned 28 last week. Isn’t that fucking incredible? Having a bit of trouble defining himself. He’s suffering in a big brother can’t do a fucking thing for little brother kind of way. He gave therapy all of about 2 minutes before he nixed it. His long term girlfriend R is still here. Think it’s been about 6 years for them. I don’t know what he’s waiting for. I told him to piss or get off the pot and give someone else a shot. He pretty much ignores me when I bring it up. He doesn’t treat her right either. She should probably keep searching for that soul mate. I don’t want him to waste her life waiting for him. They have lived together for 3 years. Just don’t understand.

MB2/ Zach is 26. I know. He’s married to Lexy and they have kitties. Not sure about the kids yet, but that’s fine. They should enjoy being young. He works in graphic design, and she’s a tax gal. They are gearing up to buy their first house. I don’t have to worry about Zach. He’s doing just fine.

MB3/Austin? Still a hellion. Only now he’s 23 and a Marine. All KINDS Of crazy. Still sweet though. Would do anything for anyone. No girlfriend these days. He’s enjoying himself. I hope he’s being smart about it.

MB4/ Carson – is going to be ….20. Unreal. He’s incredible. Jay calls him the perfect human. He is compassionate, friendly, outgoing, confident, kind – you get the picture. I haven’t seen him get angry since he was 5. ANd even then it was because he couldn’t understand what I was saying. He has a steady girlfriend, they’ve been together about 5-6 months. I have a feeling she’s sticking around. They got promise rings last week.He pretty much lives with her. He only comes home to watch Ian for us for bowling league, and to wash clothes. I’m glad he’s happy. He works a full time job – worked his way from a waiter (first job ever), to the manager spot. Did I mention he’s also a sophomore in college? Engineering. Mind blowing. I didn’t know if he’s ever be able to move out. ANd now look. We even had the talk about the condoms – to which he said – it’s ok, if I’m old enough to do it, I’m old enough to protect myself. Just a very mature young man.

Savanna. Baby girl is 17. Makes you want to hurl, eh? She’s awesome. Very smart, very kind, very down to Earth. She’s very outspoken for things she believes in. She’s a junior in high school. No boyfriend, although her best friend is a guy, and I soooooooooo wish they would see how perfect they are for each other. Not my call. Dammit. She’s beautiful. Prom is coming up, and she said I can do her hair and makeup – which she doesn’t do — at all. She is a no frills gal. Take it or leave it. Very spirited. Did I mention smart?

Ian is 15 years old. That statement is so very odd. Wasn’t he just 8? I try to enjoy every day. Every drop of the day. Trying to bank the memories? Damn. That kind of sounded morbid. I’m not erasing it, because I rarely erase, but damn, doesn’t that sound yucky? Duchenne has become a part of our lives. He’s up to two heart meds, 3 albuterols, zyrtec, singulair, flonase, 4 tums, 2 d3s, prednisone. It’s a shot of that wet shit in the nose, 8 pills, one breathing treatment, 3 rounds of cough assists per day just to keep it clear, 4 tums and a singulair to chew. And he’s healthy. Incredible times await us, I’m sure.

Anyway, back to my boy. My wickedly smart boy who will best you at trivia, rest assured. Especially music or cars or war or weapons or games. He’s a fucking master. No lie, he’s got a bad case of that there ADHD , and he just fucking pours that information in to his head. He has an xbox, a google home, smart phone, and an ipad. I figure he can pretty much find anything he wants uses one of those gadgets. He is losing the battle with his left arm/hand. They simply don’t want to work anymore. “Too heavy to lift.” Fuck you Duchenne. So, he has partial mobility in his right arm/hand. That’s how he feeds himself. And his remote for his games are set up a special way he can play thanks to his big brothers for ordering those specialty ones.

He got pneumonia twice in a month a few months back. Had to be hospitalized the second time to rehydrate. Said he was getting it due to aspiration. So, he has to have a swallow test. And a gtube inserted because he lost 5 lbs and weight is of the UTMOST priority when it comes to their odds at fighting this bastard disease. He also probably needs the spinal rods. I don’t like it either, but he can’t keep getting sick like that. Scary shit. My heart just can’t take seeing him like that.

Anyfucking way —

Jay is Jay. No, I take that back. He is SuperJay. He cleans, he cooks, he handles doc appts now, he handles the money, he handles the schools and the lunch money and the dental exams and vision and Ian’s well checks and he stays up every night to make sure I leave safely. He start my car 10 before I leave, and watches it out the window so no one gets in it. He has shoveled snow three times at 1am for me the past 6 weeks. I heart him. He is the business sales account guy for the cable company. He works very hard to bring home that bacon. And I luuuuurve me some bacon.

Me? Graduated from the local university a year ago. I got a job at the PO a few months after graduation, and have been here ever since. Totally not my field (psychology and computers) , but that was only for my benefit anyway. I make good money, I like my job, and i love who I work with. Can’t beat that with a stick.

I feel like I’m out of the loop…

This depression has been a real downer (ha!) the past few years. I feel better the past few weeks, but we’ll see how long that lasts. At least I’m up and helping Jay clean and cook and shop and budget. I wasn’t doing a fucking thing. Not one fucking thing to help him. I’m a real winner.

Was thinking it was time for a family update. It’s been awhile. They’ve grown. I’ll work on that. Will give me something to do.

Blessed Beyond Words

There is a current picture of kiddos in this post. I guess it’s going to make you click on it.

There’s Ian in the front next to Savanna. Zach’s wife Lexy is standing next to her. Next to Lexy is Austin (Our Marine). Back row starts Tyler with his girlfriend Rachelle. Next to them is Carson and his girlfriend Lacey. Then there’s Zach, standing behind his wife.

Man O Man, I’m beat. Bored and Beat.

Jay and I had a fight last night. Not a large one, just bickering back and forth. Getting more and more slice and dice with the comments. Caring less about the other because of the constant ick in the air. I hate this. I hate that it’s deja vu all over again. Things slowly going down the shitter – going to bed angry, not resolving the fight, but ignoring it until it pops up again.

Right down to the getaway to try and help things. Let’s see. We had a fantastic time in the summer of 97. Two months later, we were filing for divorce. God, I hate this.

I love him, but he’s slightly narcissistic. He can up and leave the fucking room while I’m in the middle of the sentence and go run dish water. ? Da Fuck? So, last night he is talking during dinner. He starts finishing his story up after dinner and I remember I had laundry in the basement but I needed the basket, so I had to fold. I didn’t want to interrupt him, so I slowly backed into the other room. I expected him to follow. He stopped talking – completely. It was then I realized he was pissed. So i got pissed. Mother FUcker has cut me off, interrupted me, ignored me, placated me, and I get in trouble for going to fold clothes while telling him with my eyes and body language to follow me. I had my pop,purse in my hands, or else I would have waved. Asshole. I gave him a piece of my mind about how his narcissistic ass has hurt my feelings over and over for the past 29 years, and once — ONCE — I hurt his feelings, and he’s going to fucking start a world war over it. Whatever. He knows that he let me go to bed angry. Makes me angrier in the morning. OH well.

I’ll ride the train until it stops.

Stop this ride, I want off…

I swear, I only work 8 hours a day, I only sleep for 3 hours a night, which means I should have 13 hours for the rest of life. Errands, chores, baths, meals,… I still never seem to have enough time. Maybe I should track my computer time. Nah.

I’m tired of the fucking weather. I know everyone is, so let me just get it out there for all of us. Tired.Of.The.Fucking.Weather.

We’re (the husband and I) are going to Las Vegas in about 2 weeks. Getting excited. I have a mandatory break from work for a few days, so we decided to get away for a few days before our son is too advanced for us to go anywhere.

Yeah, I’ll update. Some. Time. Soon.

I remember why I stopped blogging…

I don’t have any fucking time to post. I have spare time now, but it’s not really spare. I should be getting ready or doing laundry or dishes or cleaning out the fridge or grocery shopping or any number of things that need done around here.

My husband has been doing all of it lately. I just don’t have it in me. I need a med change, but both the doc and myself are nervous to switch anything. I’ve been on the same meds for 7 years now. The depression it just getting worse the sicker my son gets.

Damn, I might have some catching up to do.