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.
and I can’t find my baby. That song played just now on my playlist. That song was on the radio when I first saw Jay in person , up close – 29 years ago – when we were both in the Army at Ft Lee VA in training. Then I found out I was going to Germany and he was staying stateside. This song played over and over for weeks, while we got closer, and the thought of separating was causing me to be physically ill. I had never felt that way before. The only way to switch duty stations was to get married. So we did. He had just turned 18 years old – like 2-3 weeks prior, and I was a month away from 19. Parents handled it quite well, actually. We got married in a courthouse- just him and I, and our best friends from our unit. No parents, wasn’t time. We figured we would have a formal wedding later. Then 7-8 years go by, we divorce, separate for 4 months, and reunite. We remarry in a small ceremony at our house. Again, spur of the moment at the urging of the kids to stop being boyfriend and girlfriend. I plan on a formal wedding someday, just because. I should note that I love planning it. By the time we get around to it, it’s gonna be fucking awesome…we’ll be 90, but it will be awesome.
I just get insecure sometimes. I read too much into shit. I just need to remember that Jay is straight forward. No games. No hidden agenda. He has never given me reason to doubt him. I need to remember that.
One minute our marriage is stronger than ever. Or so we think. Then something stupid sets one of us off, and the “fuck off” s fly and the words sting – and we wonder if we’re going to make it when the kid all leave us. I hope so. He’s the reason I breathe.
A few polyps that he’ll test just in case. But his cholesterol is high and his thyroid is sluggish and they want a heart ct. He has changed the appointment twice now, and it’s only been 2 days. He has had the cholesterol medication for over a year now. Does he take it? Nope. But I’m supposed to take my meds. I see how it is.
I swear last week the world was grey. So was my mood. This week has been a welcome change of pace. Change of temperament. I remember why I am lucky to be alive. I forget sometimes.
Just trying to stay above water. I was/am having a great couple of weeks, but I should have known not to appear too happy.
Jay is having ‘issues’. Tests tomorrow, pray that it’s nothing.
Oh, and one of the girlfriends has been nauseous the past few weeks.
Not yet, man. Not yet. I just need a little more time.
Incredible. Incredible he’s stayed married to me all these years. Batshit crazy – that must be how he likes his women.
an annoying as fuck little cat? she just yowls all day. yes, she is in heat, thanks for figuring that out for me. Yes, that’s why she’s howling. Yes, I am taking her to get fixed. But that’s not until the 17th. And she’s yowling today. Non stop. Yooooooooooowwwwwwwwwwwwlllllll. Yeeeeooooooooowwwwlllllll.
And she’s peeing. Everfuckingwhere. Jay hates cats. Has only agreed to them all these years for me and the kids’ sake. But when he smells pee? Or steps in it? Or has some bitch pee on his paperwork? Or his slippers? Dirty clothes? Overturned picture frames?
Yes, she’s a pissing machine. She is being tested for crystals. Pray she has some ya’ll. If not, it’s behavioral – and that ain’t what Jay wants to hear.
Anyway. I have to go a new direction on the insurance because of the meds. Bloody hell. This is a fucking nightmare.
I just want to go back to when he was born – back when I knew nothing. When he was healthy and happy and his future unwritten.
Back before the broken bones and the curved feet and the scoliosis. Back when I did not even know Duchenne existed. When I held him all day and spoiled him rotten. Back when he could walk and go to the bathroom by himself. That really really sucks to have to rely on others for your potty breaks. Embarrassing. I try to make it a non-issue as much as I can and chat about school and such while he’s emptying out his bladder. But when the night comes and he has to go #2? Talk about humiliating. Especially when someone has to wipe your ass. He’s 15. He does not want anyone wiping his ass. That poor kid. He deserves every little fucking thing I ever gave him as payback for what he has to endure as a result of the MD.
Maybe i will take a nap.
Yes, I listen to music 24/7. Why the fuck not?
Wait till I’m done dancing… hard to type. Alrighty. dance time over, now a song that makes me cry. Nice. Why do I DO that? I make the playlist. Masochist.
I am still wading through insurance bullshit. I finally think I have one, and WHAMMO – some minor detail that is not minor at all. If by minor you mean Game Changer. I found one that is perfect. Except the fine print makes that plan NOT eligible for the postal discount – so it’s not paid at 75%. So it’s $600 a check. A check. Every two weeks. Fuck you and your mama. I ain’t paying $1200 for health insurance. BTDT, ain’t going back. So, it’s the union plan for me. SHOULD be fairly cheap for fairly decent insurance. When I am full career status, I get the other one discounted as well. Something to work for, I guess.
I feel better today. About my boy and his Duchenne. Not great, just better. Just have to release the …. pre-grief …? … from time to time. It builds up so quickly.
I need a nap.
To break the same heart with the same shitty diagnosis over and over again.
Mar 2010 – Doc tells me some bullshit. My heart sinks at the look in her eyes. I know it’s bad.
March 2010 – Driving home, Jay reads to me from the Internet about Duchenne. I almost wreck my car. I think I have my first panic attack.
March 2010 – We tell the older kids. Their breaking hearts breaks mine all over again.
March 2010 – telling relative after relative, friend after friend…no one takes it well. i match them tear for tear.
March 2010 – initial test results come back – extremely high creative levels. indicative of duchenne. I think of getting in bed and not getting out. Ever.
April 2010 – lab results return – positive for duchenne. My whole world crumbled. There just aren’t any words to describe the feeling you get the moment you find out –for sure — that there isn’t a fucking thing you can do to stop your son from deteriorating in front of your eyes over the course of the next 10-15 years if you’re lucky.
Do I sound crazy or bitter? I am.
May 2010 – More results from dna testing – Deletions 45-52. Whatever the fuck that means. I know now what the fuck that means. It means my son is very close to having a medication that can slow his progression, only so far it’s only available to kids who can walk (in other words, kids that they can measure progress with). As soon as it is approved, he can get it supposedly, but that’s years in the future. I don’t know what our future looks like.
Broken heart every time he falls. Every time he breaks something. Every time he loses another function. Every time he cries because he can’t do something anymore. Every time he coughs or wheezes or can’t catch his breath. Every time we have to sleep in shifts so someone can make sure he’s breathing ok. Every time he searches the internet for more clues to his life. Every inch he gets closer to finding out one day that …. well, he’s going to find out one day, and I’m going to have to comfort him. I don’t have any magic words. I don’t think I’ll have any words at all at that moment. Just a broken heart.
I cannot get this song out of my head. Cannot. Repeat for weeks now. Usually happens, but for days at a time. If I’m not listening to it, my mind is playing it over and over.
all i really know, you’re where i want to go….
That movie ending stayed with me for awhile too. I get so fucking sad for anyone that feels like the best thing they can do in life is to die. How utterly tragic and really fucking sad. And the babies killing themselves nowadays! 11 years old, 14 years old, 20 years old ….. What the fuck? It would be easy to blame the parents for not being in the kid’s life or whatnot, but when it comes down to it – it’s the kid’s choice , not the parent’s. I raised 6 kids basically the same way – I worried EVERY FUCKING TIME that my sensitive kiddos went into emotional overload that they were going to go off and kill themselves. Ask my husband. Drove him insane. But I could ‘see’ it. I could see them being that upset that they could possibly see no other alternatives – it doesn’t take much to come to that conclusion when you are a teenager and you really don’t have all that much in your life to begin with. One bad week of being bullied or teased or getting dumped by girlfriend or getting a bad grade or getting grounded or a broken xbox. Then add mama getting on to them for whatever reason? Shit, I could see a bad couple of options, and in one of them – “I” don’t make it out alive either. Fuck that. My kids were basically on suicide watch when ever I even barely suspected that they were a tad unstable in the emotions department. Bana was young and cute and I would use her to check on them – she’d bring her tea set into their room and give them juice and cookies. I would come in and ‘save’ them from her tea party, and then I could judge by talking to them whether things had cooled down or not. Telling ya, I’m a human barometer when it comes to emotional reading. Is there such a thing? I can tell you what you’re feeling before you can lol. All over your face. In your tone. Your hands. I can feel it on the back of my neck the instant I’ve invested enough time into someone to tell that they’re bipolar. In fact, I’m pretty good at diagnosing/guessing people’s conditions before they go in – and I’m usually correct. Border line personality disorder always trips me up.
the ending made me sad for days .Sorry to ruin in for anyone. If you don’t know what I’m talking about , then move along with your bad self.
Think I need a hot bath. Yeah. That’s exactly what I need.
I wake up at 1am, spend an hour getting ready, go to work for 8 hours, drive back home – and these muthas are still sleeping. Must be fucking nice.
I like the quiet time though.
Except I can’t keep my eyes open. Time to get up and wake up.
The kids are moving in this fall. Together. Both of them. I must be crazy , because they only things i’m worried about are if her parents are going to like us for this, and will I flip my shit when she’s around one day. I don’t seem to mind that my unmarried son and his girlfriend of 6 months are moving in to my basement for probably two years or until they get sick of us. She’s not planning on going home, like anymore. She’s officially moving here. It’s one thing to live in the dorm, it’s another to have an address. She’s made her mind up to be with him. I am over the fucking moon – unless she turns out to be a whackjob, in which case, it’ll be good they’re here – with me. The bigger whackjob. Who could definitely lose her shit if need be. But I don’t think that’s going to be the case. She’s a good girl, and she loves him completely. She is seriously like a girl who found her fairy prince. This is what she acts like – and he acts like he carries a sword on his hip to defend her and treats her like a queen.
I am NOT jealous.
I’ll have someone else to talk to in the house. Someone I like. Now. Dammit. I hope she’s not nuts lol.
I guess so. My little birdies are breaking my heart by moving out. Carson wants to get an apartment this fall, SavannaBana is moving about an hour away after next year to a neighboring college. Austin’s been gone for 3 years. Zach’s been gone for 6 years. Tyler for 7 years. What the fuck people? Where in the hell did the time go? Seriously. Once you hit a certain age, whammo, the ride gets faster. I’m zipping through my life – their life – at an amazing speed. I barely have it together to plan holidays these days, and then I go on happily many weeks/months later about how I’m going to make …rolls for Thanksgiving, or cookies for Christmas – only to have a family member remind me that X already passed. Either I’m just tired, or I have fucking dementia. I swear. Damn time warp, only I wasn’t invited. Always late to the party. I’m going on about bullshit.
I should be cleaning.
I don’t clean anymore. If you used to read, way back when I wasn’t a student or a worker, but a lean mean cleaning machine who stayed home and ran a badass household with 6 kids and probably ….. 50,000 neighbor kids, and life ticked by at a seemingly normal / almost dragass pace. Payday never came soon enough. Wished my damn life away over money. Now money isn’t so tight (most of the time), and there isn’t any time to spend it. Even when we’re off work – I only get one day a week off, and he’s the only salesman in this area that sells cable to the businesses in town. So he’s busy as shit most days answering the phone and running to installs. When we have a break together, we rest. We try to relax and enjoy what kids we have left and we are starting to realize how different life is going to be like when everybody’s gone.
Well, fuck that was depressing.
Look at me go. Jay wants to offer the kids (Carson and his girl ~LA~) the downstairs to live in – rent free, till they graduate – but they have to graduate. Pretty sure Carson will. He’s going to be a mechanical engineer with technical design as his focus. I have no fucking idea what that is or what they do – but it sounds nice and the pay ain’t bad.
They basically live in the dorm now. Her dorm room. That she is paying out the ass for. She works on campus, but the room and board is expensive. So, they were talking about moving into an apartment in the fall. So Jay came up with this idea of them living here. They’re both 20. Not worried about her living there, I’m worried what her parents are going to think of us. Not all parents are as …. I refuse to say progressive …. laid back as we are. We talk about masturbation at the dinner table. Not much is off limits – kids can always tell us anything.
i can’t tell if this would be cool or not. I like her a lot. But what if I flip my shit ? The other girls have witnessed my wrath – I guess it’s her turn . I never yell at them – but Jay and I have have ‘heated’ discussions with them in the house. She’s super super sweet. Kind of girl that wants a man to be her protector and provider – but strong enough not to need one. She likes cuddling and holding hands and walking and all that sappy jazz. Carson likes it too. He adores her. I’m so glad. So so glad. How did my crazy boy that …….. well, I shouldn’t …… well, who would demand to know if his ass was clean after he went to the bathroom. By bending over bare assed and spreading them cheeks. Company or not. Till he was about 6. Poor kid.
Should I tell the kids that stumble upon this that my free writing is choppy and winded and without proper use of punctuation? Or that I say what I want and rarely erase. However, they are safe from past posts. I got rid of everything except the pictures and skins. It actually made me cry, but what doesn’t?
I do speak my mind and I forget my place sometimes. That’s why I deleted everything. I don’t want someone hurt because of some casual snide remark I made and hurt their feelings and the friendship in the process. I once thought it a wonderful gift to my kids, but some things are best left unknown.
Hurting people unnecessarily isn’t cool.
How the fuck did my question end up here? Ohhhhhhh adhd – I remember now. I can’t make my brain sit still. I take adderall for it, but she won’t put me on a high dose – a therapeutic dose – because I’m bipolar. She think s she’s nuts for letting me try it anyway – but it’s actually help regulate my sleep. I get sleepy, which is new because I used to go for days without sleep – not now. It helps me slow up and think shit through. Rash decisions, no real hobbies or entertainment because I can’t sit still long enough to watch a movie. I hate tv because it uses MY lifeminutes to broadcast a fake fucking life that isn’t real and doesn’t make a fuck’s difference to my life – yet my husband watches anything and everything he can. He’s seen shawshank redemption 47 times. I am not kidding. I count when ever he stumbles upon that sumbitch and insists on watching it yet again. Ok, I will admit – if spongebob or deadliest catch or overboard come on – I won’t change the channel or turn it off. I won’t admit I like them, but I like them.
Damn, I’m hungry.
I want to congratulate myself on my two phone calls I made yesterday to doctors. Still have around 5-6 more to make, but Jay said he would try to get to some of them today and I can tackle what’s left. I love him.
Someone get me a cookie. Who gives a fuck?
I was thinking of something the other day. Some of my favorite experiences are ones that immediately follow some horrible stuff. Literally, like the 1-2 seconds IMMEDIATELY following the horrible shit.
Like when you have a hair in your eye. It’s fucking awful. Your eye is a pussy – it no likey foreign objects. But when you finally snag that hair, that sensation you feel when it leaves the surface of your eye? That’s Heavenly. In that moment – all is right with the world. Nothing else fucking mattered when that hair was blurring up your vision – but as you pull it out of your eye, whammo – instant Zen. A big sigh. A cheer maybe. A foul language laced flippant comment to no one in particular – such as “Dammit, it’s about fucking time”. Maybe it’s more than that. Like when the dilauded literally melts the migraine away in an instant – bringing non-pain rushing to the forefront where MOTHER FUCKING PAIN PAIN PAIN had been in charge. One moment pain, and then very next second – bliss. Shoulders finally relax, eyes can see completely now whereas eye slits were filtering out light before, and all at once you realize you would have that shot injector person’s baby for taking your pain away.
All this to say that maybe that’s the reason people cut. Or fuck with that sore tooth because it’s a ‘good’ pain. Maybe it’s not – maybe our brains release some good drugs in celebration for the absence of pain or discomfort, and I push my tongue into that tooth constantly in order to create that chemical appreciation. Give me some dopamine bitches. Not me, I take enough. heh
What else was on my mind earlier? I had several things I wanted to get out but of course I can’t remember the rest. Oh well.
I noticed that grass is turning green. I saw a robin yesterday. I’ve seen the sun 3 days in a row. The trees have buds on them. Spring is finally on the way.
It’s about fucking time.