im so sorry. i wish i had something better to offer than meaningless platitudes from a random stranger, but i am thinking of you, and if you ever want to talk, im here for you! im so glad you have family to help you through this, and you arent alone.
Holy shit, I'm so sorry. Have they tried Keppra yet? They have me on 750mg tablets that I take in the morning and before bed. I haven't had any seizures since starting it, and while my left hand is still shaky, it's way more controllable to where I can actually do stuff like using a fork and knife without it spazzing out on me. It's not fair at all for shit like this to happen to children. They're still innocent and your child definitely deserves toi am doing terrible....my kid is sicker than ever, and his doctor wants to try a vagus nerve stimulator, because he is now having constant grand mal seizures...why? we have NO clue. hes had a corpus callosotomy to stop the drops, but now this is happening...it just sucks. hes losing control of his hands, he can barely hold his head up...we are reaching the point where we are out of options.
we knew this was going to happen, but i honestly thought neurology would catch up in time, but no. hes even sicker than he was a few months ago, somehow.
his doctor did want to try this medicine called fentepla, but then we found out i can cause heart attacks, and the risk is enough that it requires regular EKG's so we decide against it.
what guts me is that my youngest..he asked me the other day how he learned to walk and talk, when he was a baby, and i was like why? and he had gathered up all of his toys and other things, and said that he was going to teach his brother to walk and talk again somehow.
i dont think i ever felt as awful as i did then, except for when he asked santa to bring his brother new legs a while back..its all just so wrong. they should be playing together, and fighting, doing kid stuff...not this.
i seriously feel so much guilt over this, because wtf. i dont even know what the hell do say about anything anymore. ive never been in this situation, and it just keeps getting worse and worse, and idk what to do, except watch it happen. my poor husband is in some weird state of denial and shock, so not much communication going on, but i absolutely get needing space to deal with this situation, because it fucking sucks.
we are signing the damn DNR next week, and i feel like a traitor, but i know its the right thing to do at this point.
Thank you for the support during the fight. Reading this thread has given me a lot of perspective, and all the other threads I follow provided laughter during my days inpatient. I'm grateful for the farms and all the fine Kiwis I've interacted with over the years.
Thanks! I've had a fantastic support system the whole way. I've had a pretty great life without many regrets. My hope is that my family becomes even closer when I'm gone so they can support each other.im so sorry. i wish i had something better to offer than meaningless platitudes from a random stranger, but i am thinking of you, and if you ever want to talk, im here for you! im so glad you have family to help you through this, and you arent alone.
we have tried it all...he has lennox gastaut syndrome, which is like satans grab bag of absolute shit...literally the only thing that has helped thus far was the brain surgery and the banzel hes on, rufinamide i think is the generic name. they did this nerve conduction study and they tell me that his nerves are destroying themselves...i guess its some weird unknown form of muscular dystrophy, except its his nerves.
No need to be sorry, I've seen that a LOT this year and I can't believe anyone can be in these types of situations and just see dollar signs. Ask for someone to check your mail for you, feed pets, maybe bring over a lasagna so they can focus on spending that time saved with their kids. Plastering them suffering on a GoFundMe is just deplorable.
I understand. I had to think about it for awhile. I can't imagine how hard it is as a parent to watch these situations play out. On the other hand, the thought of only being kept alive by machines terrifies me. I have no idea how much pain I would be in, and if it's unbearable and I can't communicate that, it scared me.
Some days are definitely harder than others. You seem to be great parents, and that definitely helps in these situations. I definitely couldn't have gone through any of my treatments without my parents support. Your son is loved and has you both in his corner when it feels like the world is against him. I'm sure it gives him a sense of comfort knowing y'all have been with him every step of the way. I know it did for me.
Thank you
I'm still going to do my best to remain positive for the holidays. Still going to make my turkey the way my brothers like it, trash talk with them over football, and going to go to church to make sure I'm on good terms with the Big Man before I go. I hope you and your family have a great Thanksgiving as well, just escape the craziness of life for a few days to enjoy each others company.
Well. If you have a loving family and true friends you will get by.
Oh my friend that is harsh. That two weeks notice, do you really need to work it? I dont think anyone’s going to think badly if you if you don’t, and I wouldn’t. Telling family will be tough, I dont envy you
Oh that’s a tough one. And one I do actually have some knowledge of.
can you tell me more about this??
If it was any other place I definitely would just quit and never show back up again. I love my job and I've been grateful that I've been able to do work I actually enjoy the last few years, my previous jobs had no idea how to manage us and always eventually tried turning us into IT help desks, which is never what I agreed to do when taking the positions. This place has been good to me though, they've given me all the time I needed to deal with this when they could have just fired me, and I want to at least make sure I can provide turn over to the person who will replace me. He's a good dude and really smart so I don't think he'll struggle, I just want to make sure I teach him a few old tricks I've used over the years that'll make his life slightly less stressful
Not at all. I'll consider myself lucky if I can just lay down to go to sleep one day and pass painlessly. At the very least, if I get really bad I just want them to hit me with enough dilaudid that I won't be able to feel it. Shit, at this point I should probably see if they'll give me a medicinal mj card since I won't need my security clearance anymore.
so LG can be caused by about 50 different genes. Possibly even more but those are the ones we know of.
@WASR96, I hope you will be, too. It happens. Meanwhile, please do whatever the hell you want to, and the hell with everything else. It will be hard to not take in the reactions of those around you when they know, but remember that they are responsible for their own feelings, it's not your job. Do whatever makes you feel okay. You have a really sane, commendable attitude about a bad situation. And yes, your cat will miss you. They feel more than we can know.
Too much of anything can kill you. You can die from water poisoning, even though your body has a very high water content.
Brain, lung, colorectal and pancreatic are mostly death sentence cancers. That really sucks. The person I know who has cancer has breast cancer. That can be nether here nor there depending on what is it. They haven't told anyone what stage or anything.
