I wanted to listen to My Own Prison this morning (oh hush, I love it), but I couldn’t remember who sang it. I knew Scott Stapp, but I didn’t know the name of the band. I put my head down and thoughtthoughthought – and CREED popped into my head. I yanked my head up to scroll back up to get to the C’s, and saw that my cursor was hovering over My Own Prison. I’m not even lying.
Co-Workers think I’m a witch because I can ‘find’ people. If I start thinking about someone or talking about someone, I’ll see one of their packages or letters that day. 3 have happened at the same moment. I was listening to a friend speak about a co-worker’s ex-husband being a deadbeat dad and how they couldn’t locate him and yadayada – and guess who’s letter I happened to be holding with his new address? Yeah.
I was talking to a new gal about the psych department at the university and rambled on about my favorite professor – only to be holding her package when I looked down. These strange “happenings” make me jump inside – my guts are tied in knots for hours afterward.
Then my favorite – I was telling my friend at work about my mother’s diet pill addiction – and proceeded to toss a package (of pills) into the bin. I went to check on the package because of how it landed. It was mom’s. I damn near had a heart attack.
If I’m a witch, I’m getting fucked out of cool powers. Soooo, I don’t think so.
All from ~ I A N ~ ‘s pt and ot and principal and nurse. WONDERFUL people. Just checking in with various comments and suggestions after getting my email this morning about his appointment Monday.
I heart them.
I have all my Halloween decorations now. Just need to wait another week or so. As soon as I see a fall display outside someone ‘s home – it’s on.
The principal said I was strong. I sure don’t feel strong. I feel really really weak and small right now. My son has started down a path that I can’t save him from. All I can do is hold his hand and walk with him.
I can only imagine – this song comes on right at this second? As I sit here thinking about Heaven and my son and my dad and is any of this shit real – and this song plays? I’m not much into signs and I’ve only recently began talking to God again – but I have over 10 gb of music, and I Have one “religious” song – and this is it. It gives me chills, especially right now.
I can only imagine what it will be like When I walk, by your side I can only imagine what my eyes will see When you face is before me I can only imagine I can only imagine
Surrounded by Your glory What will my heart feel Will I dance for you Jesus Or in awe of You be still Will I stand in Your presence Or to my knees will I fall Will I sing hallelujah Will I be able to speak at all I can only imagine I can only imagine
I can only imagine when that day comes When I find myself standing in the Son I can only imagine when all I would do is forever Forever worship You I can only imagine I can only imagine
Surrounded by Your glory What will my heart feel Will I dance for You, Jesus Or in awe of you be still Will I stand in your presence Or to my knees will I fall
~ I A N ~ had his semi annual appt Monday. Basically, his spine is shit and needs rods. His heart is ‘nothing to worry about’ , yet she ups the doses and orders a third heart pill. And a heart monitor. And they stamp – sudden heart failure risk – on his chart. yeah, it’s fine.
They won’t wait until he has left the room before they start talking about serious stuff. His care, they say. He’s almost 16. Yeah, I know, but my boy is sensitive. He was having trouble yesterday about the spinal rods thing, and we talked and he felt better. Now we have to tell him that the test results show major scoliosis, and he needs the spinal fusion surgery. He will no longer be able to feed himself. Or write. Or or or. I hope he can still play video games. That will be a sad fucking day in this house.
I will own these motherfuckers by the end of winter.
I swear it. I will do whatthefuckever I have to do get them. Jay already asked how much they were when I was gushing over them. $320. I know. That’s groceries. Car payment. But dammit, those boots will last forever. No lie. I add a pair or two every year, and most go back 15-20 years now. I take care of my boots. I love my boots.
And these will be my boots…
Say hello to my pretties …
Go to the site to turn the boot to its side – udder perfection.
I wrote a partial post, clicked anyfuckingwhere to hide it when the fam walks in, and then I lose it when I’m alone again. I don’t retype. Can never get it right the second time. So, it’s gone. Something about old flames that shouldn’t be revisited anyway.
I hate that I am limited here by what might be. Who might find this. Who might read it. I’d move , but it doesn’t hold the same charm for me anywhere else. So, here I stay. And here I stay restricted. S’ok. Partial release is better than no release.
Two paragraphs in, and I’ve said nothing. It’s a gift.
I still love my job. I do. But it’s hard work, and it’s so early – 1am. That sucks when you have to go to bed when everyone else is just getting into their evening. I miss so much. I’m always tired. I’m getting a better routine, but that involves sleep, and I detest sleep. Wastes my fucking life minutes. I will sleep when I’m dead. Until then, I’ll live on the bare ass minimum.
So the other job I applied for hasn’t started interviewing yet. Friend of mine said the boss is holding off, while trying to talk to me on the side the past few days about how I’m next to be promoted, and how everyone loves me, and how I’ll be working that window soon.
He’s a fat fucking liar. Yes, I’m next, but the 1pm-930pm gal threw her hat into the mix. Now I’m fucked. Let me explain.
Position comes open – people bid for that time slot, that specific job/role. Sometimes it’s window, sometimes it’s work. Clerk work. And clerk work is NOT sorting letters. It’s pushing 500lb metal cages full of mail and packages around a huge plant. It’s unloading the truck when it’s 130 degrees on the dock – or worse, 15 degrees. It’s standing in one spot sorting packages or mail or magazines for 4-5 hours at a time. There’s a job there sorting all mail for the 72 rural towns – I kind of like it now. It’s ass stomping busy. Like, you get there at 1 and except for a mandatory break at 4 – you go at it until 7. Full speed sorting and throwing and moving and running and omg it’s nuts. Exhilarating though.
Anyfucking way – I am a support clerk right now. I can’t bid on jobs yet. So I have to wait until Person A wins the bid for the empty spot – AND THEN I have to wait for Person B to win Person A’s now empty position – and so on. I would get what ever job is left – and it’ll be the worst one with the worst hours. And I consider 1-9pm fucking horrible. No one else wants it either. So that means I’m a shoe in.
Some ways it’s not bad. There is nothing to do but make sure your support clerk is doing their job and bullshit with drivers. Fucking easy. And I like the people on that shift. Just not the hours. I need to be here for when ~ I a n ~ gets off the bus.
We’ll make it work if we have to. Just rather not have to.
He bought me a Note 10+. I am a phone whore. I love fucking love new phones. New androids. I love coloring with the stylus.
I better bring knee pads to bed tonight. That thank you will take awhile.
I’m good. Amazing what taking your meds — all of your meds — will do for your mood. I essentially blew off about half of my medication by not taking the night ones religiously. I need 3 lithium tablets – I take 2 at night so they don’t upset my stomach. So I basically score low on the lithium levels BECAUSE I DON”T TAKE ~~~~~ MOST ~~~~~~ OF MY LITHIUM!!!!
Anywhoooo – I’m better. I applied for another position and since I love where I am now, either way is great. I would make more an hour, but with a lot less hours – for now. The pay would stay later as I bid for other jobs with more hours. This schedule that’s open is days – m-sat. 8am-1pm. Sweet.
BUT – I get around 35-45 hours a week here. I may make less, but OT kicks ass no matter what you make. And it’s po dunk town. Happens to be The po dunk town I grew up in. Well, the minitown over from there. I would be home. Sort of. I know a great of the folks there. Good people. Hot farmer men. Win fucking Win.
In other news…. my new phone will be here sat. I had to wait to get the one I wanted. I wanted the aura whatever one. Swirly. Cool. Not that any of you give a shit but I had to tell someone alive about my upcoming joy on saturday.
We joined a gym yesterday. Even ~ I a n ~ is on the membership because Hot Trainer #1 said he would hop in the pool with him and do a little PT. I thought about breaking a fucking leg to get a little of that PT action, but I just smiled and told him how wonderful that would be. And it would, cause to see that man in some trunks. Good golly molly. 230lbs – 9% body fat.
Hot Trainer #2 offered to be my personal trainer – for $350 a month. Seriously. And that’s only 2 times a week. Again, seriously dude. Like I would want to be around him all old, fat, and sweaty. Fuck that. I’ll stick to the routine the intake trainer gave me today. I get 3 more free sessions, and I’ll use that to learn what I need to do. We could get a family bundle – 48 sessions for only $1920. That’s 1- 2 months.
What the fuck? If you have this kind of money laying around- call me. I’ll train you. Train you to spend your money a little wiser. I can see having a trainer. I can’t see them charging that much. Don’t they get paid by the gym? I’m baffled – and in the wrong line of work.
I realized that today – as I was having a conversation with my fat boy.
He doesn’t interrupt much. He listens – really listens – instead of daydreaming about sniffing ass and PRETENDING to listen to me. Not that anyone does that, I’m just saying. He follows me around and cries when I’m not talking to him or scratching his head. He is devoted. I heart him.
Mister Link. Not very zelda like, but my kids are nerds.
Can you see how massive he is? He’s a big fella. He hates almost all food, yet he weighs 5000 pounds. Ignore the cramped living room. We are busting out of this place. Putting $ back to buy a bigger house. Strange, since almost all the kids are grown. I still need to house C and his girl. Bana. ~ I A N ~. A and his friend when they leave the Marines. (IF he leaves. Dammit. I want him home and he thinks he can be young and carefree and see the world. At least we can Facetime. Thank God for technology. Keeps me sane. Sort of.
I mean, I have tons to tell, but I lack the give a shit to put together a coherent thought. I work, I try not to fall asleep, and I sleep. Those are really my three phases of life right now. It leaves me drained and grouchy – Just ask Jay. He has stopped beating his head against a wall when it comes to me.
He just ignores me when I act like a child. Which just infuriates me more. Also pulls my head out of my ass quicker than engaging into the fight with me. He’s my fixer. Always has been. He and I are getting along so fucking well it scares me. Without money and bills to stress about – we are finding that we actually enjoy each other. Friends again. I needed it. He’s been super sensitive to my needs lately. I asked him if he was screwing around and feeling guilty about it. He rolled his eyes and kissed my forehead. I accuse him of other women constantly. I know I shouldn’t. I have no reason. But it no matter. I’m crazy, remember?
We are going out tonight for the first time in months. We’re going out to eat with ~ I A N ~ and C’s girlfriend so she’s not home alone while he’s at work. Bana is at work too. But when they get home, Jay and I are going to watch some volleyball games and relax. Then we’re going to enjoy each other in a way that has never been an issue.
I find that without IRL friends – alive ones – I spend a lot of time internalizing my thoughts and I spend way too much time talking to myself and I spend shitloads of time talking to dead people that can no longer join in on the conversation.
My husband is fantastic – he’s my best friend. Has been for 29 years. But a girl needs more. I need to talk into the wee hours of the night and get our nails done and do lunch and all that fun stuff. I don’t have anyone to unload to about Jay. Can’t bitch about someone to that someone. That’s rude. I’d rather talk about him behind his back. Can’t do that to my mom because when you share negative shit with your loved ones, that’s all they remember. My sister is moving, but we only talk occasionally anyway.
Summer is quickly approaching its end. I’m sad because we no longer go to the pool or the beach or the aquatic park or the water amusement park. ~I a n~has bent legs and turned in feet. He needs cushions to sit in most places. Or his chair. It’s hard making it work. We are stumped with ideas on fun things to do in a wheelchair. I want his days filled with fun, not bottled up in his room always playing video games.
Although he loves those video games. I think they keep him sane. Or at least occupied.
I wondered today about what he’ll look like when he’s older. Then I choked up because that’s all it takes for my brain to remind me that he probably won’t be ‘older’. Immediately I feel punched in the throat. Reminder #475,987,346 that my son is terminal. Terminal. I found a website on Duchenne that had good information on research, and there was a flashing banner — Duchenne is 100% fatal – there are no survivors — And I thought – really? I get that they are trying to incite a donation reaction, but it made me nauseous. More than that – it made me very fucking angry that all I can do is watch blinking signs that countdown my son’s life. I can’t DO anything to his attacker. I can’t kill it. I can’t throw money at it. I can’t wait for medicine to work. I’m not sure if prayer works, but it’s all I’ve got. I find myself talking to God quite a bit too. I decided that yes, I’m agnostic to a point, but that doesn’t mean I don’t believe. It means I have questions. Lots of questions. I hope God doesn’t find that offensive.
I can’t believe it’s 11 already. I got home at 8:30 – sat down, paid a few bills, read a post or two (or 47), and sat down here to write. Hot Damn! I can lose some time. I’ll check my fitbit later to see if I took a nap. I never realized how many naps I get. I don’t realize I’m asleep, and when I wake up, I pick up where I left off. I think something’s wrong lol. I always thought narcolepsy was bullshit. I don’t think so anymore. I do it while driving. Yeah. I have done it while talking. While listening. While bathing. Very annoying.
I don’t sleep when I’m standing. So I’m going to go clean something.
A Fucking month Ang? My gawd. Way to get back to blogging.
I have been busy. I have been working a lot. I have been really tired.
Blah Blah I know.
I’m here now, that’s what matters. Yeah.
My pdoc is leaving the practice. Going somewhere I can’t follow. I am crushed beyond words. I love her to death. I would not have made it through my son’s diagnosis without her. Or dad’s death, my sister’s cancer, and my cousin’s murder. She’s the reason I don’t have nightmares anymore. She’s the reason I don’t have to check in every month – I decide. Every three month or so. Sometimes longer. I’m ok now. She gets that. More importantly, she believes that things could get ugly real quick, so she really listens to me about the meds. I want to take them, they make me feel better. They make me a better person.
Someone else isn’t going to understand that sometimes I need the propranolol and sometimes I don’t. Same with the adderall. Shit, no psychiatrist is going to let me keep my adderall. Me, bipolar. Yeah, no. I can hear it now. Hopefully my 5 year history proves that I only take it when I can’t get my shit together mentally. I’m not hooked on phonics. Personally, I don’t see what the big deal is. I feel nothing when I take it. I simply think clearly. Calmly.
WTF am I going to do. When the receptionist called and told me, she said that the doc had her schedule last appointments with a few and I was one o them, so at least I get one more appt with her. I’ll ask recommendations and such. All while I try not to bawl. 8 years. A sixth of my life. Dammit.
Enough of that. I get this feeling like I’m about to be pushed out of the boat – and I’m not sure if she taught me how to swim well enough. Sheer fucking panic. THat’s what I’m feeling. So… enough of this shit for now.
In about an hour. Still haven’t finished all the details of what I want, but I think he’ll help me with ideas. Just an infinity symbol, but a little jazzy.
I get to go through a slump right now. Bad time of year. Making sure to take my meds. All of them, and not just a handful of days because it’ll squeak me by just cuz I’m lazy and don’t want to get up when I remember to take them. Then I forget. Next day, lather rinse repeat. I’m an idiot. She’s (doc) is going to shit her pants when she sees my lithium levels. I know they are higher than usual. I never take my night pills. Now I am. That’s an increase of 600mg a day, of course my levels read higher now. But now I have to explain my laziness. Bah
My new insurance took their sweet ass time getting the deal done, and now I have to wait 2 weeks for ID cards and information. 2 weeks of no meds. Meds that are expensive. There are 22 monthly pills now. And I dropped two. Even at generic prices – that’s $220 a month minimum. But wait – ajovy is a specialty drug and I have to pay the first $200 a month. I get that’s it’s expensive and doesn’t have a generic yet, but shit. That shot is a God Send. One headache in 2 months. Compare to 3-4 a week. I bought new perfume!! I’ve worn the same shit for 30 years because shopping for new gave me a headache. I bought new cologne for Jay. I LIKE not having a fucking headache. I LIKE being able to go on trips with the different climate NOT giving me fucking headache. I LIKE being able to have a little drinky poo with out instantly getting a fucking headache. So, do I pay the $200? On top of the 220? But wait – I take 2 other specialty drugs. I don’t think they are as expensive but still. I have to have that shot. Let me go make sure they don’t have a program. To keep you hooked on phonics.
And no, i’m not a child who insists on pretty-ing up their names. I don’t want the names searchable. By those children.
ANyway — he bought a ring. A really nice one. He’s proposing this weekend I think. I’m not supposed to know either. It’s a surprise for all of us. We only know because Jay is friends with the bosssman, and he said congratulations, and Jay said huh? So it was explained and Jay talked to him about it. He’s got a plan, he’s got a ring, and he’s popping that question – but that they will wait until at least he graduates. 2 years. I say that’s horseshit. I give it less than a year before they can’t hack it and get married.
Either way – I’m thrilled for them. I love them both.
work today as I was putting out the box mail. I worked with her years ago. I was there with her and the rest of the girls when the call came in that ~ I a n ~ had tested positive for Duchenne. She was about to cry today when I told her how old he was. Yes, it’s that scary. Everyone in his life is trying desperately to stop time. Stop it and give it all to him. Boys with duchenne – they don’t beat it. It’s not like cancer and you have a sliver of hope. I know we have none. There is no hope. There’s no cure, fuck, there’s no treatment. Nothing but steroids. Help the body now, so your bones can pay for it later. Like 9 calcium infusions, 5 broken bones, and soon-to-have spinal rods later. There are some trials going on , but they all want ambulatory so they can gauge progress – and I get that. But gggeeeebus, they need to hurry the fuck up. Exon 53 is in the works – that’s the one ~ I a n~ needs. He has a deletion of 45-52, and this trial drug targets that range. This drug is supposed to fill in the blanks as the body goes to form a muscle and there is no dystrophin to complete the job. It’s not perfect, and it’s not a cure, but it might hold things off a little longer. Maybe long enough for some brilliant young scientists to bless us with a cure. Please.
I would forget to blog. Or I have something to say but no time to it.
I’m training in a new location at work. I’m not liking it, but oh well. It pays well to suck this bad
I’m still in a pretty good mood. It’s amazing what taking ALL your pills will do. In stead of forgetting 3-4 nights a week. Just laziness. When I remember to take them, I can’t for what ever reason. Not home, in the tub, etc. Or I’m just lazy and tell myself that I’ll catch them on my way to bed. Can’t keep them by my bed, because , i don’t know. I don’t like pills laying around. Even though my kids would never ever take shit from me. Nada once has anything – money, pills, booze – has ever been stolen. They know that they just have to fucking ask. ANd maybe hear a lecture. 🙂
Anyway, where was I? I’m taking the pills now because Jay has to take his. Did I update on that? He has high cholesterol and an inactive thyroid. Oh and 3 of the 4 polyps were precancerous. Fanfuckingtastic. Not thinking about that shit. He was lucky he didnt wait any longer to have the test.
Carson just got back from southern MO to visit his sweetheart. Drove 5 hours after working the am shift to get there. SPent Sun, Mon together , and had to drive back today for work. Fuck that. Young love and all that, but fuck that. Well, let me think about it. We got married so young for the same reason – we were sick without each other. That makes us sound all corny and shit, but it is what it is. I still feel that way when he’s gone out of town. I don’t sleep, I hardly eat. I couldn’t take any more deployments so he got out of the Army. I just need him around. All the time. I bet he feels smothered. I mean, I am not going to stop stalking him when he gets home every night, but at least I recognize his pain.
One sec … Funny, that rest lasted less than a minute. Oh well.
I am in a great mood, considering some of the flat out fucking depressing aspects of my life. Overall, today, we’re doing great. We are so blessed. Truth be told, I’d give up the extra money we have with only 3 kids in the house if we could go back to the days when I would have to cook for 8-10 kids every night.