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.
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.
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.
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.
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.